Daily Blog

I understand your concern. I took Humira and Remicade for treatment
of Psoriatic Arthritis. However, when I changed Rheumatologist he
asked if I ever tried taking Sulfasalazine and Hydroxychlor. I said
no, so we gave it try. It has worked out for me. Maybe this could be
a choice for your son.
I am also a mother of 4. I was diagnosed in 2004. with Psoriatic
Arthritis. Sounds like your son is in the middle of a flare. I feel
for him. I have a hard enough time dealing with this disease, let
alone have a child deal with it. I wish him well. I thought I would
mention what medicines I take. It's nice to keep all options open.
Taking pills is much easier than giving yourself an injection.
Does anyone else in your family have Psoriasis? My husband and I both
have Psoriasis. I developed Psoriasis when I was 20 years old, my
husband had it as a baby. Then Psoriatic Arthritis hit me 19 years
later when I was 41. This is one of the toughest things I've dealt
with. The pain from the flares is so debilitating at times. Not to
mention the pain and stiffness that comes along with it.
During my flares the doc gave me cortisone shots to deal with the pain
too. I want to you to know you do have options.
Keep us posted on how your son is doing? This is a great group of
people to share with.
Rhonda

Zara,
Mark's story got me sad because I'm already professional as to PA.
If you have enough money, or your insurance will pay, come with him to the dead
sea in Israel. I, myself< go there twice a year for 4 weeks each time. It's a
lot. you can start once for 4-6 weeks. it is a kind of climate treatments. lots
of sun, dead sea water, mud and sulfur treatments. it is not cheap at all. your
sun will nee a lot of discipline. However, after 4-6 weeks he could turn out
"black", clean off psoriasis, less pain in the joints. A new young man. True, it
does not hold a long time for me. about two months and all the story starts
coming back. This is why one has to repeat the treatment each year. The people
in the Dead Sea have experience with young people like Mark. They have like
kids camps there where all the participants have the same problems and they are
not ashamed of it. Good luck to mark and to you as his mother.
Arie

Has anyone out there had their SI joints fused with the newer minimally
invasive technique? My doc just recommended it and thinks with the new
procedure it will be effective and a minimal recovery.
Rae

I've been on Enbrel since last June and, fortunately, I must really have a
strong immune system because I've not had a single infection - even a cold -
since. (I always get an upper respiratory infection in the winter so this is
unheard of for me but I suppose it could still come.) I talked to my internist
about this very issue before starting the drug; and she said during the first
year or two, while you're trying to figure out precisely how your body will
react, it's OK to be a little paranoid and call even if it is just a cold.
However, I would not call just the rheumy; I'd call your primary care physician.
My internist has 12 patients who are on Enbrel (given by their rheumatologists)
and only one has developed a life-threatening infection; but when that happened,
it was the internist - not the rheumatologist - who took care of her, though I'm
sure the rheumy was consulted. (Incidentally, they did take her off Enbrel
until she got better; then
she went back on it.)
Joanna Hoelscher

Hi Patty B,
The article you pointed at was very important for me. I do have problems in my
ears. Doctors always say I'm wrong about it. The article about the ears cleared
the fog they were spreading.
Thank You
Arie
--

BEAR WITH IT BABY, ALMOST ALL OF US GO THROUGH IT. THIS TO SHALL PASS

My name is Zara and I am a 28 year old mother of four my oldest son
Mark is 14 and was just diagnosed with Psoriatic Arthritis on April 9.
I got a crash course on his illness the doctor will be starting him on
Humira as soon as the MRI comes back I read all the pamphlets he gave me
about Humira and i feel so scared about giving him the medication the
side effects scared me. He has swelling and fluid in his right knee and
has psoriasis all over his head and belly button. Theres no cure this
is for ever. He is depressed I know we can get through this he's 14 he
has his whole life ahead of him he's alive he's loved.
"zr_martinez" <zr_martinez@...

Hi, Rhonda:
I completely understand your nervousness. I was into panic at the
thought of starting Remicade, which I did just one month ago. My second
treatment was Thursday. I know there are many people on here who have
been on Remicade far longer than I have been and can offer amazing
advice. I, on the other hand, can only offer the fresh in my mind
experience of what its like to start it.
I was terrified. Of everything. The needle, the room, the nurses, the
medicine (would it burn like Humira?), how sick would it make me? Was
all this worth it? Even the medicine smell of the room upset me.
Procedure day I've wept the entire 3 hours, more or less. And that after
taking 10mg Valium..However, I don't think my experience is normal. If I
weren't so severely afraid of IVs and needles it would have been totally
fine. Everyone else in the room was fine, more than fine, actually;
certainly no one else was a big baby like me. Bring a book or they will
have a tv. Lots of people slept in their recliners. When they pull out
the IV there's only a few drops of blood and my wrist didn't hurt or
bruise afterwards.
As for afterwards, I feel wiped out, all wrung out. I just want to lay
down and sleep, which I do, for days more or less. It makes me nauseous
for several days afterwards and also intestinally distressed, which I am
not sure is typical. Last time I felt bowled over for a week, but the
next week I felt more energy (tho still nauseous etc). Also, I noticed
this time that diet drinks taste awful to me now, like chemicals and
metal and not like Diet Coke (I have no idea if its related to the
Remicade, but I am a 5 Diet Coke a day drinker and they don't taste
right to me as of yesterday)
That's the downside, which I am fine with because it does seem to be
working. The first treatment the lessening of the pain was pretty
subtle, but it was there and any less pain was A-OK with me. By the end
of the 2 weeks I could feel the stiffness coming back, but it was still
better than it had been. After this second treatment I feel the pain
lessening again, and I am really hopeful it will lessen even more than
last time. My psoriasis (which my Derm said covered 60% of my body) is
lighter in color and seems to no longer be actively spreading,
hallelujiah.
I agreed to the infusions because I was hoping for a Lazarus-like
miracle. So far, its not a miracle for me, exactly. However, its the
quickest improvement I have had so far and I have been on MTX,
Prednisone (well, that was pretty miraculous on the joints but the side
effects are not good), NSAIDS, Humira, etc. After just 2 treatments I
went from immobile and in terrible pain all day, every day and now I am
able to walk (still with pain, but better), my toes are no longer
sausages, and my hands and wrists do not look like baseball mitts
anymore. My Rheumatologist told me to "keep the faith". And since Humira
did nothing, absolutely nothing to help me, I am grateful for any
improvement! I can put up with the nausea etc as a trade off for moving!
:-)
I hope it works miracles for you; for many people it does. And don't be
scared because its not bad :-) The nurse told me that many people think
of it as a quiet relaxing "spa day".
Carla

Dora,
Not to mention when you have that one you "love" so much moving you,
they alway's mess up your stuff...LOL!!! Well not always and not
intentially either...LOL!!! Don forgot to put blankets between my
dining table and a dresser. Big deep gouges are still in my dining
table which I am still going to refinish...someday! Now I'll be
much healthier to complete it! My stepson who visits a few times a
month was always a Sweetie in trying my patience as a "new stepmom"
probably could relate too! I got shot in the eye with silly string,
he stepped on a moving hanging rack for clothing, dropped paint on a
coffee table/doilies and didn't even tell anyone about it.
These "were" antiques too. Well not to continue with my early day
troubles...he loves me now and sure makes my life a little easier!
The stepdaughter...we are working on that one!!! Ugh to be 13 again!
I forgot to mention that we are moving ourselves again but I am
going to take a more active role this time...heehee!!!
Hugs, Linda

What timing you have, I was just wondering the same thing. I have been
battling some kind of virus all week (2 days in bed) and it has now
turned into a cold. I did not take my injection last night because I
wanted to get on the better side of whatever this is. I'm curious to
see what others say about this topic.
"eeytcheson" <eeytcheson@...

Linda,
I moved my stuff into my husbands house at the end of 2003 after we got married.
It is hard to get all your stuff into another house that is already full. I am
almost to the point that I have culled all the extra stuff out, but am not happy
with the way it looks yet. But believe me, we are thinking about buying another
house and if I ever move again I will pay movers to move me. There is nothing
that I hate worse than moving. Good luck to you. I know how difficult that can
be.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hello All,
This is my first post. I have been a member of this group for a
couple of months and have already learned so much, and have
appreciated all of the knowledge everyone so generously shares. I was
diagnosed about a year ago. I am quite sure that I had PA for a long
time. Anyway...
If everything is approved by my insurance company I will start
Remicade ASAP. I started out on MTX and then started Arava a couple
of months into my treatment. The MTX alone did little or nothing for
me. The combination of both drugs did help some. But, now my liver
enzymes are very elevated and my rhuemy seems to think I need to come
off of the Arava. I have been very apprehensive about starting
Remicade. But, on the other hand, if it helps...I guess I will be all
for it.
So, I guess I am asking what to expect. I am nervous. I don't
know why, but I am. But, I also need relief.
Thanks,
Ronda

Hey Mindy,
I am new to the group, but reading your post really touched me. I
also have some hair loss as I start some drugs. While nausa and
fatigue are awful--I am always the most frusterated with the hair
loss. Appearance is so important and sometimes, I feel like when the
hair loss starts, it is the last straw.
There isn't a 'quick' fix to the hair loss. When it first started I
went to my dermatologist who said it could be due to slight psoriasis
on my scalp and he recomended using 't-gel' shampoo. You can buy
this at any drug store. It did stop the hair loss overall.
however, the best advice I recieved was from my new OBGYN and
Rhematologist (different women) who both said that sometimes hair
just falls out..it can be a vitamin level that goes wacky while your
body sorts out the new drug or stress or a variety of things. But if
it goes on for over 3-4 months, then to consult a professional.
If you are really stressing, I would call either your OBGYN (as it
could be hormonal) or your dermatologist.
I don't know if this helps at all, but you're not alone!
Hugs
Sarah

Hello group,
I just joined this evening and I thought I would put a post on there
to introduce myself.
I am a 27 year old Young Adult Novelist who has lived with Psoriatic
Arthritis for 8 years. I am told I am an interesting case as I have
PA, but not psoriasis (although it does creep up on my scalp and in
pin drop patched on my arms). I am also in my 3rd bought of Iritis,
which is an eye disease that is directly related to the PA.
I am currently taking Aleve and Diclofinac as needed (which is almost
every day). I recently just discovered that I am loosing cartalidge
in one knee--which is oh so fun as that pain will never go away. But,
on the bright side, I'm not allowed to do squats. I can live with
that.
I am going to be walking in the local arthritis walk at the end of
May. (I live in Chicago IL, if anyone wants to join my husband, dogs
and I in Naperville).
I hope I can be a source of insperation and knowledge for some of
you. I can say that by reading through your messages, You have
already given me hope.
Please send me a 'hello' note.
Sarah

Hi, my name is Davina, I have been disagnosed with PA since 1995. I
have been on methotrexate on and off for 13 years. I am currently on
Humira, (nearly two years) which is fantastic, even though I hate
needles. I have PA in most joints especially the spine, jaw and finger
joints. I was diagnosed 6mths after getting married. The first
specialist, told me that I should not bother to have children as I was
3rd genration PA, which would put the baby into a high risk category
for PA. My husband and I have made the decision not to have children,
on 3 doctors advice. I live in Tasmania, mild to cold climate, which
at times can casue flare ups.
"davinasakell" <davinasakell@...

Hi folks,
For those of you on Enbrel and other TNF-inhibitors or DMARDS that
suppress your immune system, when do you forego your weekly meds?
* Flu? (I say yes)
* Sinus Infection? (Yes)
How about a common cold or allergies? Would you recommend that I skip
my dosage this weekend? I'm pretty sure it's allergies. My eyes are
watery and itchy, and I'm congested. Very sure it is not a sinus
infection.
I'll call my rheumatologist tomorrow for advice, but what's your advice?
Thanks everyone.
--Vera
p.s. Officially celebrating my First Year of managing my PA--one year
ago this week was my first Enbrel injection which worked quickly and
miraculously for me. Went from being almost completely immobilized to
walkling virtually pain-free within three days of my first injection.
Celebrating this milestone by doing the Arthritis Foundation Walk next
month! Woo hoo!

There has been much discussion about the liver recently, and I thought
I'd share some interesting links:
The American Liver Foundation
http://www.liverfoundation.org/
LiverInfo
http://www.liverinfo.ca/
Your liver: An owner's guide
http://www.cnn.com/HEALTH/library/DG/00038.html
A Family Physician's Guide to Monitoring Methotrexate
http://www.aafp.org/afp/20001001/1607.html
Patient Education - Methotrexate
http://www.rheumatology.org/public/factsheets/methotrexate.asp
National Digestive Diseases Information Clearinghouse: Biopsy
http://digestive.niddk.nih.gov/ddiseases/pubs/liverbiopsy/
Harvard Health Publications: Liver Biopsy
http://www.health.harvard.edu/diagnostic-tests/liver-biopsy.htm
RA Harris, North Jersey

The liver is the only organ that has the capacity to regenerate/repair itself so
I wouldn't worry too much at this point.
Joanna Hoelscher

Jennifer, don't worry overly much until/unless you are sure there is
something to worry about. If MTX affects the liver, it usually
returns to normal pretty quickly after stopping the drug. That's why
they do the regular blood tests. It takes a while for any permanent
damage to happen. The blood test alerts them quickly and they can
stop before anything really bad happens. Most likely there is
nothing to worry about.
best regards,
sherry z

Hey Patty,
Your following the same trail we all have after surgery. I even
fell into a depression which I was told our brains quite producing a
hormone that sometimes throw's us into that dreaded feelings. I
have been put on Lexapro and life got so much better afterwards. I
have only just started eating meat again as they started tasting
like cardboard...Ketosis! Blah it was bad! I also had trouble and
still do getting in my protein (now much better) and water. Its a
learning curve we all go through...some much easier!
Hugs, Linda in AL.

I also posted to the group that I'm being switched from Methotrexate to
Azulfadine. I felt that my body was no longer tolerating the medication, due
to extended nausea and bile-filled diarrhea. My rheumy switched me to
Azulfadine at my visit yesterday, with the instructions to wait a couple
days before starting it, to wait until my nausea has calmed. Well, this
afternoon the rheumy's office called with my blood test results. I was told
that my liver was "very irritated" and was instructed to not begin the
Azulfadine as formerly instructed. I'm now to return to the rheumy's office
for lab work in 2 weeks, to see if where my liver results will stand after
being off all medication for 2 weeks.
I'm not sure what test came back bad (she did some extras since I was
concerned about the bile). Has anyone else had something like this happen? I
don't know what to expect, nor if there will be any permanent damage to my
liver. Is there anything I can do to help things along until the my lab work
in two weeks?
Thanks!
Jennifer in NC

Bob,
I am glad you took that view on the much needed surgery we have all
desperately sought! My Dad...another Bob didn't see it that way and
passed away at the age of 59! Maybe other's will see its worth
spending to get something very valuable in return!
Hugs, Linda in AL!!
retirement but what would retirement be if we die early or have a
stroke<<<<<

I really find it fascinating that your symptoms changed with your geographical
location. Is there any explanation for that? What have your doctors said about
it.
Joanna Hoelscher

Hey Dora,
Moving...it took me over a year to get all of my stuff up here to
ol' Alabama! No kidding we did it by our truck and the end a
borrowed trailer. Gosh I was so excited when I had gotten "my"
stuff up here and then when we bought our home...my stuff in it
too! I guess it helped make the transition easier for me when I had
familiar things around me. Now moving back to Tx will be done all
at one time....LOL!!! Oh thank the Lord on that one...LOL!!!
Hugs, Linda

Jennifer: I developed UC about 3 months after I was diagnosed with PsA (and 8
months after the PsA symptoms started.) I'm told by both the rheumatologist and
the gastro that the two often go hand in hand. If you've had it before, it may
still be there and need to be checked out again.
Joanna Hoelscher

Beth,
Hi I'm Patty - if you see my email I wrote earlier
under Sunrising713 - I am about 27 days out and
feeling very depressed also. I'm not angry just
depressed. I am going back to work on Monday - I feel
I need to as I am going crazy at home. I have no
cravings so I'm not sure how to deal with that but I
am just trying to find food I can eat. I'm
definitely having a tough time. Patty

Hello all.
New to the group
Brief History.
Living in Houston, symptoms of PSA about 6 years ago after tearing
tendon in knee while running. knee never really got better.
symptoms started moving to hands 5 years ago, however I was
transferred to south America and all symptoms completely disappeared
3 years ago moved to Asia. symptoms returned slowly. Rheumatologist
started me on prednisone and Aleve about 6 months ago. Got mostly
better, gained weight with pred.... was down to 5 mg per day
3 months ago moved to back Houston. symptoms hit like a freight train.
Dr put me on Asulfadine and Nabumentone, with Folic and
prednisolone.
not really working so he wants to use cellcept next.
anyone been down that path yet?
cheers

Thanks to everyone who replied to my Methotrexate Question post last week.
I actually already take Nexium for reflux, as well as Zantac for
breakthrough acid (and when I eat spicy foods). I've tried splitting the
dose and that didn't help either. I went to my rheumy appointment today and
we're doing a medicine change. In addition to the MTX causing 5 days of
nausea, I'd been dealing with bathrooms runs - I'd get sick to my stomach
(lower GI) anytime anything entered my stomach, either liquid or solid, and
I'd have to dash. For the past week, I've been releasing large obvious
amounts of bile into the toilet. Since I know bile is made in the liver (and
gallbladder was removed 5 years ago), it got my attention. The subject of
injectable MTX was brought up, but to be honest, it's to the point where the
mere thought of MTX makes me want to throw up, so I am going to start
Azulfadine. I actually took Azulfadine for a couple years back in the mid
1990s for Ulcerative Colitis. I thought it had been in remisssion for a
while, but my rheumy thinks perhaps it just changed it's target to my joints
..
Anyway, I'd love to hear experiences from those of you who have tried
Azulfadine. It's been so long since I've taken it, but I know it helped when
I was using it for colitis so long ago.
And the bonus? In a couple weeks I can have that margarita! Yay! Not that I
m a big drinker, but sometimes a couple glasses of wine come in handy when
you are out of town for the weekend visiting family, ya know? :)
Jennifer in NC

Hi all.
I need your help. I am 12 days out. I am a little ... no a lot depressed and
ANGRY! I wanted to be back to work already but I am just not up to it. I feel
like I want to cry all of the time. I am so sasd and stressed I think I am
making my recovery harder than it needs to be. My skin feel sso weird... kind of
dry. I hate it. I do not know how to get through this. I want crunchy food SO
BAD like just a bite of fried chicken! Has anyone else felt this
? How do you get through it?
Beth

The rheumy put me on enbrel and mtx(6pills ) and Celebrex twice a day
and Oxycodone. I get up in the morning and don't hurt and I'm not
stiff and I can move my arms without my shoulders killing me. The meds
scare me a little but they are helping so I'm taking them. My back
still hurts really bad after about 15 minutes of standing but I rest a
lot and can get some things done that I wanted to get to. I feel like a
new person.
"shirley_s_2002" <shirley_s_2002@...

Hi, Carla. I have no experience with Remicade (I'm on Enbrel) but I do have
ulcerative colitis (which developed within a few months after my PsA) and I know
from talking to my gastro that Remicade is the biologic of choice for UC and
other serious gastrointestinal ailments. So it's strange that it would be
causing that kind of problem for you. In fact, when I was initially in the
process of trying to figure out what was causing my intestinal problem and was
sent to him, I asked if it could be from the Enbrel and he said no because
Enbrel was so similar to Remicade and that was the med gastro's used for serious
colon problems.
Joanna Hoelscher

Ok, so I started losing hair a few months after starting Humira. I
asked my rheumatologist about it, and he said that wasn't one of the
side effects of Humira; however, I've googled it, and it appears that
I'm not the only one taking Humira who's experiencing hair loss!
Has anyone else lost hair while on Humira?
And does anyone have any tips for stopping hair loss? I took folic
acid while on Methotrexate...would that help? I've read using baby
shampoo helps a bit. Is there any sort of all natural product or
solution that may slow it down or stop it?
I'm stressing about it, and stress can also make your hair fall out.
Fabulous!
Help!
Mindy

http://www.masmarriage.com/indian/profile.asp?id=mas00093f

I found them. You look Great!!! Congrats!!!
Alice hardestyal hardesty@...

Hello, all!
I have just started Remicade and since I'm new to this I have a few
questions for you experienced Remicade patients. First, the Remicade
made me feel really ill afterwards, like lay in bed and don't get up
for 5 days, hit by a Mack Truck kind of ill. I felt weak, achy, nauseous
and, uh. intestinally distressed and in the bathroom a lot. Is that
normal? (I can't believe I am asking perfect strangers this haha)
From day 6- now (day 11) some of the ache has left, but I still feel
weak tho less so, nauseous and am still quite intestinally unwell.. I'm
taking Pepto-Bismol and Pepcid every day but it doesn't do much.
Does this all sound like par for the course? Is this the trade off for
joints feeling better (which they are, a little, but this was just my
first treatment so I still have high hopes.) What else can I expect?
Does it change with time, the longer you take it? Does it ever stop
working tho it was working before, it stops after you take it foe so
long? Any info would so greatly appreciated!!!
Thanks, everyone!!
Carla

Gosh, that's wonderful and very inspiring to me. Thank you so much for
sharing this little ray of hope that someday I, and we all, may get our
lives back!!! While football isn't really my joy, it sure would be nice
to sew again!!!
Carla

my pix are under jim hawg. the hawg is part of my e-mail

Go, Mickey! That is really great news. Thanks for letting us know of
your success.
regards,
sherry z

Deb,
I've been on MTX and Enbrel now for over 2 years, with excellent,
quality-of-life restoring results. This had definitely knocked my immune
system, so I have to go off them when I get a bad cold or the flu, and
recently did just that. After 2 weeks, I thought it was safe to start the
MTX again and as soon as I did WHAM I got hit with the worst bout of
exhaustion and flu symptoms I have experienced since starting to take it.
Maybe I should have taken a 10mg dose instead of the full 15mg too. I will
discuss these with my Rheumy next visit.
I have heard of the meds not working after going off of them for a while and
restarting. That scares me. Anyone have that experience? Anyone else get
advice to taper into the meds after suspending them for a while due to
illnesses or surgeries, etc.?
Thanks
Jeff

Hurray for you, Micky. What a great story. Continued good luck with your
recovery . . . ..
Joanna Hoelscher

Hi Guys
You may remember me as Micky from London
Anyway some of you who know my story will remember me. I always promised
that I would come back and keep in touch if I ever got better through
treatment, as I always felt that when I was a regular contributor on here,
we never got to hear of the success stories. And there the ones that kept me
going!
I just wanted to let you all know that there is hope for you guys. It may
not seem like it for some, and obviously some people have different side
effects to others,
But I was just writing to let you know that I am back playing football /
soccer now thanks to MTX. Yesterday I scored 6 goals! Which was a fantastic
feeling let me tell ya!
Considering where I was 3 or 4 years ago, for me it is a minor miracle!
So please don't give up the ghost and keep trying to find the right medicine
for yourself. As, believe it or not, I was in such a bad way (pain, pain and
more pain) I really thought there was no hope for me when I was diagnosed
with PsA. Then I came across this site, and through the support and kindness
of the other members, I got the courage to start taking MTX. It has been a
long and hard road, but finally I feel my life is pretty much back to
normal. (For now of course)
Of course my life will never be normal again, by having an Auto-immune
disease it never will, but to actually go out and play football/soccer
again, well it really moves me to my core!
What worked for me was the MTX and it really has been a godsend, I also
combine this with Cats claw which seems to have some anit-inflammatory
properties (Not Proven) for me.
I wish you all well in finding that something that can get you back on your
feet, literally!
All my love
Micky
London x

Thank you to everyone for all the helpful replies and encouragement. I
was supposed to take my 3rd dose today but I went to the doctors first.
She gave me several options but also suggested that I skip this weeks
dose and get my 'cold' under control first. Since I got the cold at the
same time I started the MTX I'm not sure whether my fatigue is due to
the flu, MTX or a combo of both. I told her I was dreading taking it
again today because of the exhaustion and as long as my body is
compromised with fatigue I'm not going to get over this damn cold /
flu, whatever it is.
So I'm feeling so good about that. Although it will put my progress
behind a bit, I'll at least know when I take my next dose what's what.
She also suggested I start off on 10mg, when I go back on and not the
15mg. I'm also not going to take it on a Friday, since my busy work
time is on weekends. I'll probably start in on a Monday this time.
Thanx all..................hope everyone has a beautiful
weekend..........Deb

Hi all,
Just had to post and say, WAHOO, things are starting to move. I
don't have a date yet, but the surgery coordinator at my surgeons
office hopes to have my surgery scheduled in March or April. I am
so excited! Ready to get on with it!

I've been taking/using 6 different natural substances reported by the
National Psoriasis Foundation to have been shown in at least on
controlled clinical study to "possibly" help psoriasis. Turmeric is
one of them.
A new study by University of Pennsylvania researchers finds that
turmeric is no better than placebo for psoriasis. They suggest that
any improvement is due to the placebo effect or to natural ebb and flow
of the disease.
http://www.thaindian.com/newsportal/health/eric-not-better-than-placebo-
as-psoriasis-treatment_10023067.html
I'll continue on with my plan to test each of these substance for at
least several months, but so far nothing is showing any efficacy in my
case.
just FYI,
sherry z

There is quite a bit of anecdotal testimony from members recommending folic
acid when you are prescribed methotrexate.
Since folic acid stops the action of the metho you should skip your dosage
on that day. For instance, when I last took it I was having a 50 mg shot of
metho and my doctor prescribed 1mg of folic acid a day for 6 days.
Check with your rheumatologist. There is also another drug called
leukovorin that stops the action od the methotrexate. I was prescribed that
for a
while too. I took it in divided doses over a 24 hour period after
the metho shot in addition to the folic acid. Both of these were
prescriptions when I took them. Hopefully, you and your doc will find one to
get the
severe fatigue in check. It worked really well for me
Michelle S
group founder

There are special loans for medical procedures. Go to
obesityhelp.com. They should be able to give you links. The
surgery is about $30,000 if you pay for it on your own`.
Anna

Hi Jennie, congrats on the weight loss, i went nuts when i had all
that flab hanging on my legs, tummy and boobs, it made me sick to
look in the stomach. It was truly hard to enjoy the big loss of
weight when i had to look at the sagging skin. I had my surgery
after 1 year and 2 months. As you can tell i was over anxious. I
still lost some after(about anotehr 25 pounds so i was close to
goal), but that had no effect on the surgery. They took everythihg
that needed to go, it was fabulous, and i even had a breast
reduction done. I feel like a kid again! The only place I did not do
was under my arms, I like to wear tnank tops and didnt want all the
scars to show, so i work out every day with my small weights and
they are getting a little better. No way in He** woud the rest of me
ever had gone back elastic wise or wahtever. It just wasnt
happening, and i was working out 4 times a week, and walking 2 miles
a day.. but that was 2 babies later and i was 41 years old too... so
you are much younger... who knows!!! Keep up the good work!!

I was just looking through the pictures now that we can get back
into them. Is Starlett still around? There were so many names that
we used to see all the time and they just don't post anymore. Does
anyone know anything about her?

-Kim
What kind of calcium are you taking?
Sonya

Hi Jennifer,
A couple of thoughts. I never had any nausea, but if you are taking
it on an empty stomach, try eating something soon before or after.
As far as the fatigue, I've said before and am saying again, I was
exhausted before I ever took MTX, and while I still sleep much more
now than ever, I attribute the fatigue to the PA rather than the MTX.
Finally, the liver biopsy. For me it was a NON-EVENT. I've been on
10-12.5 mg of MTX for OVER 5 years. If I can continue taking it for
another 5 years w/o a biopsy, I consider that wonderful.
I haven't gotten the results yet, but will get them next week.
Stay Well,
David

Hey James,
You men are so lucky with weightloss...LOL!!! Congratulations on
what you've done so far and I know you will have as much success in
2005!
Hugs, Linda in AL.

Honestly I am still walking because of Methotrexate. I took it for twenty years
and I do not regret it for a minute. I had one liver biopsy which was
unnecessary . . . do not let someone con you into having one unless your blood
work indicates a need for it. I know the medicine makes you feel like you have a
touch of the stomach flu most of the time . . . but I am very grateful for what
it has done for me.
anne moody <dearmaxie@...

Hi Marsha,
I have no insurance and will be paying for my wife's and my surgery scheduled
for
2/26/05. It will be approximately $50,000, baring any complications, for the
both
of us . I have to take the money from my 401K. It will impact my retirement
but
what would retirement be if we die early or have a stroke? I hate to spend the
money but I'm afraid not to. If I can regain my energy and get rid of these
nagging
aches and pains it will be worth every cent. Keep trying and we'll root for you
to
find the resources to have your surgery.

Has anyone here paid for the surgery themselves? I had John Deere
through work but they decided to drop it.John Deere will pay for
surgery but they denied me and I could have appealed but my Doctors
office wouldnt call my surgeons office to find out the information
that was needed and the suergeons office would'nt call the doctors
office to tell them what was needed. I changed doctors and this was
my old doctor. Where I work their insurance plan is self-funded and
they get Blue Cross/Blue Shield to do the paper work and they will
not pay for gastric bypass. My only option is to get a loan. I went
through bankruptcy 2 years ago so I dont think I can get a loan
without a co-signer and I am afraid to ask anyone. Dumb huh
considering how bad I want and need this surgery. I know I have only
posted a couple of times but I read what everyone else posts. Any
good suggestions would be appreciated.
Marsha

He's right it can show up in the back I have it in my back as well as hands,
neck and feet. I've had it in my back for years and just never knew that's what
it was I always attributed my back pain to a really bad fall I had as a
teenager.
Celeste

It seems some people tolerate MTX better than others. Me, much like
you suffer with the fatigue related side effects. I inject 25mg
weekly. Have been for over a year, maybe two. I feel like crapola for
about 2 days. Can barely get out of bed to vomit. But with all that
said the pain relief in my joints is wonderful. I remember oh to well
the pain and swelling without MTX. For me prednisone worked ok but I
swelled up like a blimp in less than 6 months. Put on about 100
pounds of fluid related retention. I've been on regiments of other
drugs and continue to this day. Humaria seems to be doing pretty good
right now. I've done the enbrel, remicade infusions and a host of
others I can't even remember. I'd like to say, "it will get
better"....But only if you keep smiling.

No I have not heard of it, but please do let us know how it works. Always open
for new information.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hello Pam,
Cool the 2 or 3 times we have visited there i really like it there. If you want
to chat sometime you can email me at Thumper2252@...

Hi everyone,
Hope everyone is having as good of a day as they can. My question this
time is about the MTX and fatigue. So far I've taken 2 doses, 15 mg on
Fridays. The first dose I took I was extremely tired for 1 day only.
The second dose I've never recovered from. SO, SO, tired, I can't stand
it. Now, I don't know if it's a combo of having come down with a cold
right after I started the MTX or not and I should probably continue on
it to give it more of a chance but I'm so scared to take my next dose
on Friday. I have to work, I'm self employed and have no choice. Just
feel like I'm losing it here. Yes, it's helping with the morning and
evening stiffness but if I'm totally useless it's just not worth it.
Will this get better??. Is there some other drug to combat the fatigue
part of it??. Just seems like I'm always taking more and more drugs and
I hate it. I was SO good on the prednisone and I want to beg them to
let me go back on it.................All for
now.............later ...........deb

Thanks, I had never heard of it before you mentioned it, but I went
to the site and it looks interesting. Maybe next payday I will buy
it too.
Pat in snowy/icey RI

I've been taking Methotrexate since November. I've been on a 20 mg/week oral
dose since January. In the last month I've begun to have some problems and I
am concerned that my body is no longer tolerating the drug. I take my dose
on Saturday, so I can take it easy over the weekend. Like many others on
here, my energy is sucked out of me within hours of taking the medication
and this extreme fatigue state lasts for 2 days. Within in the last month, I
ve begun to be extremely nauseated within hours of taking the medication as
well. The nausea is pretty strong through Sunday night, and where before it
would go away by Monday, it now hangs on through the week intermittently,
and resurges whenever I put any food into my stomach.
Has anyone else encountered this? I go to my rheumy on Monday for my 2 month
check and I want to learn what I can before I get there. There has always
been something about the MTX that makes me feel uneasy about taking it, and
hearing of liver biopsies concern me.
Thanks!
Jennifer in NC

Hi Bill, I tried the Lyrica I hope it works better for you than me. I also take
Loracet and Methadone. I have fibro and arthritis bad. I am 42 and have had this
for 10 years. I am at my wits end right now because it's not helping and I feel
worse and don't no what to do anymore! hope you are well today.
Hugs, Lanay (from Michigan)
Bill Middleton <middleton.bill@...
<<Yes I know about the pain thing, all I get is some Hydrcodone and some Lyrica!
I just want to feel half way normal again!

David wrote: As far a PA starting in the back, I'm not sure that that
is true. I was always under the impression that it tended to to
affect the lesser more flexible joints like knees,elbows, fingers
first. But that's not to say your back couldn't be affected, I
would just think that it would be less likely to start there.
Look on the National Psoriasis Foundation website
(http://www.psoriasis.org) or talk to your rheumatologist. PA CAN
happen in your back as a primary site. Although I had been
complaining of hip pain for years, the orthopedic specialists kept
telling me all I had was osteoarthritis (In my mid to late thirties?!
I don't think so. But I wasn't as well educated about PA then as I am
now.) Eventually things got worse and I developed stabbing back pains
all up and down my spine. I couldn't bend, couldn't walk without
leaning on two canes for assistance. I was short of breath all the
time, feeling as though I just couldn't get a deep enough breath of
air into my lungs. I ended up having to go on medical leave of
absence from my hospital job and my internist finally referred me to
a rheumatologist because it was obvious to him that the ortho doc was
wrong and it wasn't osteoarthritis affecting me that badly.
The rheumatologist took a thorough history and examined me. Among
other things, he noted the psoriasis on my scalp which I had always
thought was just dandruff. He noted a decreased measurement in my
costal expansion on inspiration as compared to normal folks, and
decreased measurements in my spinal flexion. With that, he told me
I had a diagnosis of "spondyloarthritis". He said the two most
likely causes were either ankylosing spondylitis (which was later
ruled out with Xrays and a negative HLA blood test) or psoriatic
arthritis. He stated in either case, he preferred to start aggressive
treatment early to minimize further joint damage, and began
Methotrexate therapy right away.
The Methotrexate was a miracle drug for me, after a few months I
was well enough to return to a full time nursing job, albeit it in an
office setting as opposed to the hospital setting. Unfortunately,
by itself it wasn't enough to stop the degeneration in my hip.
Ultimately, I ended up seeing another rheumatologist who prescribed
Enbrel along with the MEthotrexate, but by then the damage was
done, and I had a hip replacement almost two years ago. I am proud to
say that the surgery went beautifully and that I was back at work
full-time 28 days later, and still currently employed full-time. I
still have flares, but manage to keep going. My heart goes out to all
those on the site who are enduring more severe symptoms than I.
Take care.

Sorry I missed that question...My Brain is really slow with being sick
again....I am or was 5'2 and I am now 5'1 1/2 and its due to lack of calcium
which has weakend my bones....
Sorry didnt mean to ignore you...
Kim
rsullivan10@... wrote:
Ok - ignore my last question of how tall you were... How is it you lost a half
inch in height?

I didn't get any responses to my post yesterday about the chicometrics, so I'm
assuming no one has heard of it or tried it.... As with many other videos (I
have a slew of pilates I plan to use after my surgery), I think I am going to
buy this video as well and try it out...... It'll be a while - but I'll make
sure to re-post and let you guys know if I had a good/neutral/bad experience
with it....

Sonya,
No matter what you are dealing with, please always remember you are not alone.
Anything that any of us are going through I gurantee that there is someone else
on here that is dealing with it. That is way I love this group so much.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Ok - ignore my last question of how tall you were... How is it you lost a half
inch in height?

Tracey -
I used to take Ultram at night and sometimes during the day. It didn't
make me as "looped" as Percocet and meds like it, and I could tolerate
it better than most morphine-based drugs. I finally stopped using it
because it gave me migraines. Go figure!
Jackie

Sarah,
I am sorry you are in so much pain . . . unfortunately that is a big part of
this disease..I currently take tramadol but you are right it does not last all
day and when I take it too late in the day I am up all night . . . I take
flexeril to help with muscle spasms but also to help me rest too . . . I have no
had the pain patches that have oxycodone in them..I have taken it by mouth . . .
I did not find it helpful . . . The strange thing is I found Tylenol #4 to help
in severe episodes which is strange since it is not as strong as hydrocodone 5
or 10mg . . . so what I am saying you may have to try several to find what works
for you . . . I hope you get lots of feedback on this question because I am
curious myself what others do to control their pain . . .
Do you have a pain doctor? If your rheumy is not helpful in this department you
might consider one . . . I currently am not seeing one because I moved..but I am
getting ready to go..I would check them out carefully though . . . there are
those that just want to dope you up and those who genuinely want to control your
pain . . .
I wish you the very best and pain free days ahead!!
God Bless,
Vickey

Sarah -
I've used lidocaine patches at times of severe localized pain, usually
in a relatively flat area of the body, such as my back. These patches
help to the extent that they take the edge off the pain and don't seem
to have any major systemic effects. the main problem is that you can
only wear a patch 8 hours a day, so I usually use them to help me
sleep more comfortably.
Jackie

Kim - what do you mean "and I am now 5'1 1/2" What were you before????

I have similar swelling in my calf from time to time. My rheumy was
worried about a clot, but that's not what it is. She is at a loss to
explain it. I don't think I have the red spots, but definite
swelling. Mine usually doesn't last more than a day.
I take Humira, Celebrex, and occasional Tramadol. Let me know if you
ever figure out what's causing your calf swelling!
regards,
sherry z
-

I'm interested to know whether anyone has used pain patches instead or
oral pain meds like Oxycodone/Oxycodine and Tramadol? did they give
less side effects including less brain fog? Was the pain relief as
good or better? Which is the best one to go on?? I was on Oxycodone
but couldn't take more than 5mg at a time without them making me too
dizzy but the pain relief was great, and also Tramadol helped but only
in SR form as the dizziness was too great again and I stopped it as I
didn't like some of the other side effects. my pain gets severe and i
was also worried about keeping on top of that . . . if I need more pain
relief one day and less another . . .
I'd like to hear any thoughts or experiences that would help me please
as I've had to stop biologicals because of severe allergy and have to
deal with the bad pain again with only MTX and a small dose of Prednisone and
Celebrex to work with...the good thing is I've a clear slate regarding pain
killers which is what the doctors like when beginning patches. Thanks in
advance :)
Sarah

Pat,
I made a resolution this year, and for the first time it has nothing to do with
my weight. This surgery has freed me of that. I know that the weight is going
to come off so there is no reason to do a resolution for me. My resolution is
to only eat lunch out one time a week so I can save money and get out of debt.
How wonderful it feels to not be focusing totally on the weight loss all the
time.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Lynn,
I wish I had read something about you're being at Disneyland sooner.
Did you know that you can rent a motorized scooter inside the front
gate, the same place they rent strollers, and wheelchairs? And if you
are having any problems getting around the cast members will bend over
backwards to make your visit a happy one. All Disney staff that I
have met over the years have a certain attitude, not only are they
happy (I think they most put something in their water), they honestly
want everyone else to be happy too. If you are still visiting this
week, stop by the City Hall on Main Street, it's next to the fire
dept. Ask about disability services. I would be willing to bet if
you feel overwhelmed and needed a quiet place to lie down, They would
let you know how to get escorted to First Aid.
I have a couple of favorite hiding places when I need some quiet time.
New Orleans Square, At the RailRoad station overlooking Main St. In
front of Cinderella's Castle. There are lots of nooks and crannies
with benches to watch the crowd go by, REST, and not get overwhelmed.
As an added plus, for the mobility impaired, ie you are riding a
scooter. You will get to by pass some of the lines. Usually this is
by entering the exit of the ride, and getting on the ride after
everyone has gotten off. This way you scooter will be waiting for you
at the exit.
Oh, and call the blue bayou restaurant and see if they have
reservations for lunch or dinner. Great food.
If you are going to be in town and going to disney a couple more days,
email me. I can probably help you out with it's on how to get through
a day at disney with out breaking the spoon bank.
Cynthia,
Native Southern Californian, rode E ticket rides, when there were
still E tickets, but does anyone remember which rides were A B C and D?

hey all.....
i wanted to update all of you and ask a question. I had the surgery 6
months ago in San Diego Ca, and doing great. I am down 100lbs and am the
size i was in high school. I never thought i would ever get here. I am
hoping to be at goal in another 6 months, right in time for summer!! yeah!!.
For the first time in many, many years, i am being asked out and being
told i am sexy and beautiful, which is so crazy for me, but enjoying every
minute of it.
I am at the gym 7 days a week and this week i actually start with a trainer.
I am watching the inches vanish, but still looking at extra, hanging/ or
sagging skin, which is killing me. For those of you out there who have
reached goal, or our close to it, does you body tone up, and how far do away
from goal do you need to be? I am only 31, and the doctor said i should
still have elasticity in my body, so i should shape up. i don't want to
have a tummy tuck or liposuction when at goal, I'd rather take care of it
now at the gym. Any suggestions out there and/or techniques anyone else has
used to get rid of the extra skin on your thighs, and stomach?
Jennie Phillips
337/237/130
7/1/04- open

This won't help your feet but you might ask if a lidocaine patch for your back
would help. Found out about them from a friend whose doctor gave them to her
for her knee while she was preparing for a replacement. Then I passed the info
on to my Mom who has osteoporosis and fractures in her back that can be very
painful. They helped her, too, and you don't have to worry about addiction or
heavy duty drugs that can make you loopy!
Physical therapy also helps - even with feet.
Joanna Hoelscher

Well I went into today for my annual exam that I get every year...and no not the
female thing..LOL...I have gained a few pounds back I am at 121 but my doctor is
happy about that...plus I had clothes and boots on.....But she mesured me and I
have shrunk a half an inch in a years time..plus I have been having problems
with my knees so we did a dexiscan today...well I am at the start of having
osteproisis...I have to increase my calcium big time...and take more
suppliments....have to go back in 3 months for another one....The only good news
I got today was I should have my approvial for the plastic work in about two
weeks....Well I also have a ear infection and sinusitus gotta love this GA
weather we are having at Thanksgiving it was 30 out today its 75....so off to
lala land I go with the drugs...Hope all is well. Has anyone heard from Denise
by the way a bit worried about it.....Hope everyone is doing well....Big Hugs to
my "family"
Kim Graby
Open 5-5-03
243-121 and I am now 5'1 1/2

I am sitting in our hotel room at Disneyland while my grandkids, daughter and
her hubby are at the park. We arrived on Wednesday and came to watch my
granddaughter dance (tap) with her dance academy near the castle. I wouldn't
have missed this for the world, but was worried how I would hobble around the
park from 8am until 10:30pm. I did it Thursday and Friday, but I had to take my
MTX last night and today I just couldn't leave the hotel room. I am always so
wiped out, and usually have the weekend to recover (I work 30 hours a week). I
don't have the severity of problems that many of you have and I know that I am
lucky. I can still do most things except those that involve walking great
distances. My grandkids, Jessica (9), and Mike (11), who I live with, are such
caring, considerate souls, and are always thinking about me and offering to
help. You are right about not seeing that in today's children, especially in
CA. That was such a sweet thing your son did-- he is going to grow up to be a
wonderful man. Your positive attitude, Carla, and your encouragement to those
on this list, is so worthwhile, and is greatly appreciated. Your kids are very
lucky to have a mom like you!!!
Lynn

Thanks Misty. I have an appointment with my rheumatologist coming up
next week and I will ask her about Hydrocodone. The Enbrel and MTX work
so well that I don't usually need anything stronger than Advil so this
sudden pain kinda surprised me, but it did show me that I need to make
sure that I have something on hand for flares. It is ironic that this
happened now because at my last appointment my Dr offered to give me a
prescription for pain meds and I told her that I was fine . . . did not
need them. Boy I was wrong . . . LOL
Thanks,
Take care,
Cathy

Congrats that is great news....
Hugs
Kim Graby
Open 5-5-03
242-121
james <hawgnutzsd@...
Hi family, I just wanted to share my latest news with all of you.
My total loss for 2004 is ....drum roll plz lol.. 101lbs with 95 of
that since surgery on 9-29-04. I am very excited about that.I know
there is more to come so I will keep you posted. I also cleaned out
my closet and OH MY GOD......the pile of clothes is huge. A few
things will still fit that didn't fit for a long time that never got
thrown out but most are history!! ya baby ya!!! I was a size 56 and
now in a size 40-42 OH MY GOD!!!! I feel like THE most blessed man
in the whole wide world. I posted a couple of before and after pics
for your viewing plesure. I never knew life could feel so
wonderful.Well thats enough bragging for now so I will say c-ya
later to all my extended family out there and be good, be bad but
don't get caught.

You are having a time of it I had cancer and my immune system needs the gamma
globulin, my psoriasis was so bad on my legs and I had one infection after
another, I went to an infectious disease doctor and my oncologist and my
hematologist and they worked out the treatment I am on plus I was on Zithromax
daily. I was on Enbrel before . . . where are you? This is a tough disease,
Ann Christmann <fetchinn@...

Thanks for your reply. Nice to hear from you. I too, was the same and had O.C.D
(Obsessive Compulsive Disorder). When it came to cleaning and organizing etc.
What a difference now. Hard to accept. But hey, we have what we have and got to
live with it and I just hope that we will find some relief very soon ! Sounds
like you have great kids and are teaching them well .Way to go ! Thanks for the
info . I will experiment with different pain meds til I find something that
works for sure. Be well & take care !
Thanks again
Yvonne
P.s - My husband is doing a great job around the house and says I'm a great
Supervisor from the bed also , lol.

Hi family, I just wanted to share my latest news with all of you.
My total loss for 2004 is ....drum roll plz lol.. 101lbs with 95 of
that since surgery on 9-29-04. I am very excited about that.I know
there is more to come so I will keep you posted. I also cleaned out
my closet and OH MY GOD......the pile of clothes is huge. A few
things will still fit that didn't fit for a long time that never got
thrown out but most are history!! ya baby ya!!! I was a size 56 and
now in a size 40-42 OH MY GOD!!!! I feel like THE most blessed man
in the whole wide world. I posted a couple of before and after pics
for your viewing plesure. I never knew life could feel so
wonderful.Well thats enough bragging for now so I will say c-ya
later to all my extended family out there and be good, be bad but
don't get caught.

Pat,
I don't know for sure that we have ever lost anyone. But there was one person
that we knew was going in for surgery and we never heard from her again. I
looked back on my calendar and her name was Leigh Mason. She had just been on
here a couple of times and then never heard from after her surgery. It could
just be that she just never checked back in. So if there has been any deaths
that is the only one that I can possibly think of and it might not be that.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hi Cathy,
I take Hydrocodone 10/500 for pain. I have a horrible back too so they have
me on Soma 350 mgs and the combination of those two help A LOT! At first I was
diagnosed with Psoriatic Arthritis, and then after 3 months was diagnosed with
Rheumatoid Arthritis instead of PA, by the same Rheumatologist. You need to
discuss this with your Rheumatologist and let them know the Darvacet isn't
helping much. I hope you get relief soon!
*Hugs*
Misty

Ann,
I have seen Dr. Knauf (I believe she is Dr. Corsi's partner) and I did like
her. She seems very understanding and knowledgeable. May I ask why you are
on the gamma globulin? We are going to try Enbrel + MTX for 2 months and if
that doesn't work go to Humira + MTX and she said if that didn't work, we'd
brainstorm. I have had this for years and am very hard to treat. I got my
insurance to let me try Orencia and promptly had anaphylaxis to it. i was
on large doses of IV steroids at home until I went into a steroid psychosis
and spent 3 days in ICU. So needless to say, things don't go well with me
and meds.
Rae

Hi Pat,
I think thats a great idea to make little goals for the new year. I
haven't used fitday.com in a long time but I will reset my goal on
there like you did. Did you say Easter is three months away? That
does sound like a good time frame for setting my next goal.
I will make Easter my next deadline on fitday. Now to figure out how
much is a reasonable amount to lose by then . . .
Anna

Amen to that!

Hi everyone,
I now know what all of you are talking about when you talk about having
a flare. I have been doing so well on the MTX and Enbrel, so I was very
surprised when I rolled over in bed the night before last and hurt
everywhere! I had a very hard time getting up, and it didnt get much
better throughout the day. My feet and my lower back hurt so bad. I
ended up calling the doctor and getting something to help with the
pain. She gave me Darvocet and it has been totally WORTHLESS. I cannot
even tell that I have taken it. Any suggestions on what pain medication
that I could ask for that might actually help?
Thanks

Hi, Yvonne:
I wish I had some great advice to share with you about pain meds to
take, but it seems all the stuff I had been pouring into my own body to
try to get thru the day has caused me to have an abnormal liver function
result. NOT the desired result. However, I will say I was taking 1000mg
Advil Gelcaps (my Internal Med Dr. suggested them as working better than
regular Advil), along with 25mg prednisone, an anti-inflamatory, and one
Lyrica a day. Usually by noon I felt somewhat better and could walk.
Without it I was down for the day. I do not suggest this other than an
emergency measure because really I don't want anyone else to end up with
an abnormal liver function result!!!!!!!!! Especially that prednisone.
It works, yes, but its like making a deal with the devil. Also, hot
soaks, especially in a melted paraffin bath really helped my hands (tho
curiously not my feet). Maybe a local nail or haircutting place would
have one you can use if you can't buy one locally.
Please don't think of yourself being useless. I know exactly, I mean
exactly how you feel.. I am (was) this super productive type A person
where everything has to be in perfect order at all times. My closet
organized by color. My refrigerator shelves neatly labeled, labels lined
up and facing out (I'm not kidding) I can't tell you how depressed I am
being unable to even do basic cleaning up of the house or even me
..especially I hate seeing dead psoriasis skin all over the floor by my
bed and I can't do a thing about it. My 4 children tease me that my cure
for everything from a scraped knee to a bad test score is go brush your
teeth and take a shower and you will feel better..and yet many days I
cant even get up the gumption to shower myself til dinner time.
BUT I try to remain hopeful that something will work, and I get can back
to my regularly scheduled life, and until then I try to focus on
thinking about that I am helpful, just in different ways. I learned I am
a great bed-bound supervisor, haha. I try to cheer myself up by thinking
about that my kids are learning responsibility in ways there's no way
they would have before, and when they go off on their own in 12 years or
so they are going to know how to scrub their own toilets and fold their
own clothes because I have patiently taught them, albeit from sitting up
in bed. And also that they are learning compassion in a deep down sort
of way they wouldn't have otherwise. My 8 year old helped an old lady
across the street last month when we were in Gatlinburg. I don't think I
have ever seen someone actually do that except in movies. But he saw she
was scared of stepping off the curb so he just went over and helped her
down, then walked across and helped her back up, just like he does for
me. I'm not sure where you live, but American kids don't do things like
that (mores the pity). So I try to hope that there is some good of some
sort coming from all of this.. Even if it takes a search party to find
the silver lining..I don't know if this helps you at all, maybe you are
rolling your eyes and thinking what a silly Pollyanna I am..
I feel for you having to travel so far just to see your Dr. My thoughts
are with you and I hope you find relief soon. Carla

Yvonne, Tramadol has worked well for my pain.
best regards,
sherry z

I had to cut back on my iron to get rid of the
constipation. I first used it every other day, then
the constipation got worse again, so I changed my dose
again. I am now just taking it one day a week and my
iron levels seem fine. I read online that
constipation is a sign of too much iron.

I have already had my surgery. -184 lbs, with only 16
more to go!

Wow,.......You've been through a lot. I guess I'm lucky my rhuematologist has
arthritis herself and understands what it's like to be in pain. It was a god
send me finding her. After the first consultation she was more than willing to
prescibe me pain meds to help deal with this.
Celeste

Following a search, there's information at the National Psoriasis
Foundation menu listing "Psoriasis on specific skin sites"
http://www.psoriasis.org/about/psoriasis/sites/eyes.php
Bedtime in the Pineywoods of East Texas
G'night, Y'all

I had surgery 5/24/04 and have lost 102 pds. I am now pretty much
at my goal which feels great. I live in Minneapolis right on the
border of Brooklyn Center. I actually grew up in Brooklyn Park.
Just thought I would say hi. It is a nice place to visit, lots to
do and the people are pretty nice. Good luck with your jouney.
Pam
243/141

Try crystal light. The raspberry lemonade is the best@!!!!
anna

Just wondering. I am on Enbrel and MTX. I have been on and off MTX for12
years and on Enbrel on and off for three years. All of a sudden I have a
surge of cold sores on my lips. I have not gotten a cold sore prior to
this in YEARS maybe 5 years.
Has anyone else had this experience? Only other thing that has changed in
my diet is I have been eating a lot of oranges with vitamin C.
Thanks in advance!
Barb

For any/all of you who say tumeric helps, what does it do? Relieve pain? Do
you take it all the time as a "preventive" or just when you're in a flare? Do
you tell your rheumy? Reactions from him/her?
Joanna Hoelscher
630-833-7361

Today is a very bad day .I hate myself today because of the severe pain
and my feeling of uselessness. I, am totaly exhausted due to lack of
sleep because of the severe pain and I just came from recieving my 3rd
infusion of Remicade .It has done absolutely nothing for the PA so
far ,but 100% difference in Psoriasis.
Can someone , anyone out there ,tell me it will get better for the PA
and if not can someone Please tell me what they take for the pain ,as
I'm ready to crack soon. I will have to travel again another 800 kms on
May 13 to see my Rheumy as I live on an Island and there are only a few
of them for all the province and unfortunanetly they are in the Capital
city on the opposite end of this great province. I would like to ask
her for a new pain Med on my next visit. Any advice or suggestions
would be greatly appreciated . Thank you in advance !
Be well all & Take Care!
Yvonne

I would say that after my first treatment of Remicade I started to
question whether I was feeling better or not, but the second
treatment I knew my answer was yes, my only struggle has been that the
Remicade seems to make me sick to my stomach, I have a hard time
forcing myself to eat. My second treatment I got bronchitis, and my
third treatment brought on pneumonia. I don't want to go off it for
fear of feeling crappy again, other than getting so severely sick for
a week, I feel really really good. my next treatment is April 1st and
I have an appt with the Rheumy right after so I hope he has something
good to say.
"tblb1995" <tblb1995@...

A note from the editor --
Recently I've been noticing what I consider a disturbing trend on the
list: people giving out their phone numbers. In close to 20 years of
administering list software and editing lists I've never seen that
before, primarily because it's not a good idea. Email is never
secure, and the archives are pretty much wide open. Just because
nothing has happened to you yet doesn't mean that you're safe. I'm
not about to edit out email phone numbers, but please accept some
friendly advice: please resist the temptation to publish your phone
number on the email list.
RA Harris

Dear Pain Meds,
Knowing when and how much to use of pain meds is one of the biggest
questions we face with PA. Everyone is different in their level of pain and
it also matters where your PA is the worse as far as pain goes. My PA first
started in my jaw joints, so I had facial pain almost 24/7 and was in
miserable pain. I couldnt work, talk on the phone, chew anything of
substance and the only relief I got was from ice or pain medication.
Finally it happened to me, I had TMJ surgery to see what was going on with
my joints and then the pain went through the roof. After only 10 days from
the surgery, my surgeon refused to refill my pain medication and my family
doctor kept referring me back to my surgeon. I found myself in pain
management and ready to almost give up. At the time, no one even knew I had
PA and had really no idea what was going on.
I have no doubt that pain management saved my life. Finding a
rheumatologist that is willing to prescribe pain meds is just amazing. Most
of them refuse to do it, and tell you the addiction is much worse than the
pain. My response to this is, Have you ever had PA or even PA pain?
Unless they can convince me and they havent yet, I know the pain is worse.
Ive seen 7 rheumatologists before I finally got the correct diagnosis, but
in all that time pain management stuck with me and never let me down. Ive
been with them now for over 8 years and its true you do have to increase
your pain meds to keep the pain under control. Developing dependence is
part of the deal with narcotics. But dependence is a big difference than
addiction, which is something most people dont understand. Your body does
depend on the drugs and you do face the risk of becoming addicted, but if
you follow along with a managed plan, like pain management, you should be
ok. I went really slowly and started at a low amount. It has taken 8 years
to get me to the level of narcotics Im on now. The main thing you should
think about is the pain doctors are experts at what they do. If you find a
good one, and they are just like all doctors, good and bad, they really know
what they are doing. Im currently on a long-term narcotic and I also have
break through medication that I can use when the time-released drugs are not
enough. My doctors knew which drugs kept me from going up and down so I
never felt high on my meds and never experienced the lows that come along
with just 4-6 hour pain meds. The also offer other treatments besides pain
meds. I have had several injections into bad joints, tender point
injections, and spinal blocks. Vitamin supplements IVs, counseling
treatment, biofeedback, visualization therapy and the list goes on. I am
always willing to try anything that doesnt hurt me in the long run. One
thing I found out is if you are in severe pain, you seldom feel the pain
medication high feeling at all. The pain is so bad that it seems to be just
used up from the pain alone. Luckily, I dont have an addictive
personality, and Ive always gone along with my doctor and never took more
than has been prescribed.
For me now morphine works the best, but you probably arent to that level
yet. If perocet works for you, then I would do what I had to so you can
function the best. Since it took my doctors over 4 years to figure out
what was wrong and how to treat me, all of my joints are affected now. As
it stands now, I need both jaws replaced, both knees replaced, my toes and
fingers are in pain all the time, my spine is affected in every area, and
now my hips are acting up. Trying to survive this is all I can do, and
being dependent on my pain meds to survive is the least of my problems.
Before I got sick, I worked full time, drove, and managed to run a
household. Now Im home all the time, I cant drive, I use a power wheel
chair at home and a cane the rest of the time. Im on predinsone all the
time and I hate the dependence of that drug the most of all of them. It
destroys your bones, skin and everything else it seems like, but it does
save your life from time to time.
Like you I have colon problems as well and a lot of arthritis problems cause
colon problems too. I just had a colonoscopy to remove a large polyp and
the scope from my stomach shows I have 2 ulcers. My gastro doctor isnt
worried at all about my predinsone, but he doesnt want me on any arthritis
drugs right now. So Im trying to cope without them, which isnt easy.
Sometimes inflammation only is helped by anti inflammatories. I also have
Fibromyalgia and a skin condition from the arthritis called erythromelalgia,
which causes my skin to turn red and burn like mad. That bothers me almost
as much as the arthritis pain. So everyones degree of pain is different.
It sounds like you have a good rheumatologist though who at least
understands the pain that goes along with PA.
All drug decisions have to be a personal decision. For me it was either
take them, or die. I didnt feel like I had a choice in the matter, but
maybe you arent that bad yet. Talking to a good pain doctor might help you
feel more comfortable taking them and make you realize that just because you
take narcotics you arent addicted to them.
I hope this helps some, and if you want more details let me know and I can
write you personally. Take care and I hope your pain lets up soon.
Fran in Florida

Hi and Welcome to the Family....I use SF Carnation Instant Breakfast..Being 20
months out its been the only one I can tolerate...but I do add a whey protien to
it that has no flavor to up the protien amount....Hope this helps
Kim Graby
Open 5-5-03
242-115
sunrising713 <sunrising713@...
Hello I'm new to this site. I am three weeks post op and have a
few questions I hope someone can help. I am having an aweful time
trying to find a protein drink I like. Any suggestions?
Patty

I think it is totally possible. it sounds promising for you.
after my first treatment I was worn out and felt like a mack truck had
flattened me, but the next morning i noticed a subtle relief from some of the
pain and my skin definitely began to change. a year later i am walking without
difficulty. that wasn't the case before Remicade.
good luck!
C

Its very normal to have second thoughts...If you are having major anxiety I
would talk with your doctor...I know the night before my surgery my doctor told
me to take a tylenol PM so I got a decent nights sleep....Thoughts and Prayers
are with you
Kim Graby
Open 5-5-03
243-115
seanarana@... wrote:
Hi,
I have my surgery date on Tues the 11th, and i am plain scared!! I am
having second thoughts, i have heard this is normal. Also does anyone live in
the L.A ? any advice would help, keep me in your prayers please....
Shawna

Hi Patty,
I'm not completely satisfied that the ulcers in your mouth, nose, what
about ears? are from the MTX. I too have had them in all three. It's
easy to pass off as the MTX, but I tend to believe it could also be
just plain old psoriasis. My psoriasis crops up when I am under stress
or if parts of my body are stressed. I typically get a sore or two
after a teeth cleaning or if I have a runny nose with lot's of
blowing. My ears, well no explanation there, but I do have psoriasis
there too from time to time. I'm not a doctor, but if the MTX is
helping your PA, I'd think long and hard before I stopped it
completely. You should know with P & PA there are few definitive
answers. Mostly just calculated guesses and risks.
I would also be concerned about you only seeing your PCP. While your
PCP may be wonderful and easy to get appts with, he/she is not likely