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Medical Forum / Diseases and Disorders / Arthritis / April 2005

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PA

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Have2CowgirlUp@hotmail.com - 07 Apr 2005 18:13 GMT
Hi everyone.  I need to know if anyone here has PA?  I used to lurk
here years ago, and I know there were a few people then that did have
it.  I recently have been diagnosed with severe psoriasis, but about 7
years ago I was being treated for RA.  I believe now that possibly I
had PA then, but after about two years of dealing with it, it seemed to
go into a remission of sorts.  I was taking plaquenil, arthrotec, and
prednisone then.  I still have joint pain, stiffness, and some swelling
at times, but nothing that I couldn't live with.  Well now I have
something worse, I am about 70% covered with pustular psoriasis, and
also have plaque psoriasis.  I am in alot of pain, it's everywhere on
me and I have a hard time sitting here at work.  I feel like my skin is
on fire and the itch is horrible!  I have all kinds of topical
medications that I use, counting the topicals, I am using seven
different kinds of medications, I feel like I could open a pharmacy.
Enough of my rambling, I was hoping the ones that have PA would talk to
me a bit and give me some advice.  I know there is a PA newsgroup, but
they aren't as prolific as this group, nor do they have all of you
wonderful people.  I just wanted to come home to this group.....I have
missed you all.

Lurker in Disguise
Harvey R. Stone - 07 Apr 2005 18:50 GMT
> Hi everyone.  I need to know if anyone here has PA?  I used to lurk
> here years ago, and I know there were a few people then that did have
[quoted text clipped - 17 lines]
>
> Lurker in Disguise

Ohhh I used to have some good posts on PA... Gone gone in one crash or
another.   I know that people come to my RDs office to be treated for the P
in PA.  I know that Enbrel and Remicade both are very effective in dealing
with PA.  I would wager that other anti-tnfs can be said to do the same
thing.   Many people in this newsgroup have and deal with it well.
Harv
DeeTee and Bob Taggart - 07 Apr 2005 21:19 GMT
See, Lurker in Disguise, I told you you could come back!  Mama Char has PA
but she's been taking it tough lately and is mostly lurking these days.  I
forget who else is on the PA bandwagon.  Someone will be along soon to help
answer your questions.

DeeTee
________________________________
DeeTee and Bob Taggart
http://www.marykay.com/dtaggart3
http://mysite.verizon.net/vze8fwov/
________________________________
> Hi everyone.  I need to know if anyone here has PA?  I used to lurk
> here years ago, and I know there were a few people then that did have
[quoted text clipped - 17 lines]
>
> Lurker in Disguise
Di - 09 Apr 2005 05:02 GMT
> See, Lurker in Disguise, I told you you could come back!  Mama Char has PA
> but she's been taking it tough lately and is mostly lurking these days.  I
[quoted text clipped - 3 lines]
> DeeTee
> ________________________________

I have PA, but luckily no psoriasis.  At least my RD thinks it's some
kind of arthitis like PA, and certainly some kind of spondy.  My
daughter has psoriasis, but only in a few choice locations (elbows and
behind ears), so it's definitely in my family.

Anyway, I spend a fair amount of time hurting.  Mostly in the 2-4 on the
pain scale, so I'm doing OK.  Worst for me is the chronic tendonitis and
enthesitis from this lousy disease.  My achilles enthesiopathy and the
golfer's elbows are worst.  My RD felt my left elbow, and I almost hit
the ceiling from the pain.  Startled both of us, for sure.  My other big
problems are my right hip and left knee.  The OA in them is not too bad
right now, but my hip is getting markedly worse and worse.  Oh yeah, PA
is a trip............

Welcome home, Lurker.  I don't post very often anymore, but I do lurk
from time to time.  This place keeps me sane.  
Signature

Di

ARTHRITIS WALK 2005 - Walk for the cure!
......and donate at http://tinyurl.com/3s3s9
or copy and paste:
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&kntae97266=82C63B573BCE428497C4EC7B99B9E880&supId=74483739

zinkadoodle at gmail dot com
www.pbase.com/di

pauls@ok.com - 08 Apr 2005 00:23 GMT
>Hi everyone.  I need to know if anyone here has PA?  I used to lurk
>here years ago, and I know there were a few people then that did have
[quoted text clipped - 17 lines]
>
>Lurker in Disguise

Welcome back to to this group.

I was diagnosed with PA a little over a year ago. The doc. started me
on MTX 15 mg oral and ramped that up to 25 mg. There were no
significant improvements in that time (5 months)
Went to injections last fall  and after a few weeks the PA went into
remission to the point where I was contemplating going back to work.
At that time I noticed that my psoriasis had also subsided quite a
bit.
Had a flare-up just before X-Mas when it got really cold here, also
noticed that my psoriasis was also getting back into the act.
The doc icreased mu injections to 30 mg which is getting close to the
limit I'm told and also started me on plaquenil at that time.
At present I'm starting to see improvements in the affected joints and
also the psoriasis is looking to be under control. Skin is only red
but not tender inaffected areas. (elbows, butt and shins, has
completely disapeared from knees)
I'm using dovobet for topical treatment on the remaining areas.

Hope they find the magic combination for you and hang in there.

PS
Norman Lampert - 08 Apr 2005 02:35 GMT
A lot of us have PA and RA (no rule says you can't have both).

It's like they say, "Sometimes I think that if it weren't for bad luck
I'd have none at all."
Norman Lampert - 12 Apr 2005 03:01 GMT
> A lot of us have PA and RA (no rule says you can't have both).
>
> It's like they say, "Sometimes I think that if it weren't for bad luck
> I'd have none at all."

Sorry, I was thinking "OA" when I read "PA".
Too many problems and not enough sleep.
Duckie - 08 Apr 2005 04:31 GMT
Nann does. Who else. My mind is blank.
Duckie

> Hi everyone.  I need to know if anyone here has PA?  I used to lurk
> here years ago, and I know there were a few people then that did have
[quoted text clipped - 17 lines]
>
> Lurker in Disguise

Signature

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    _
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<_{__)

  _('< "|,,|_"
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  _('< "AFLAC!"
 (_<_)

Nann Bell - 09 Apr 2005 06:50 GMT
Hiya!  I have PA/RA - my official diagnosis seems to shift back and forth. I
definitely have inflammatory arthritis and plaque & inverse psoriasis.  I've
had the latter since my early teens (many years, not saying just how many!
LOL).  The joints gave me periodic trouble for years, but never bad enough to
see a doc for until I was 28.  Now here's where it all sounds kinda like your
story.  Initially I was diagnosed with sero-negative RA, not an unreasonable
diagnosis as my dad and his mom both had it.  Back then they didn't treat it
as aggressively as today.  For several years I was on NSAIDs which helped
some and, briefly, plaquenil which didn't help at all.  Over time, mine too
calmed down to the point that OTC ibuprofen, varying the amount by how I felt
that day, took care of it.

During those years of near remission, I developed the nail changes of
psoriasis which I'd not had previously.  When my joints started to go haywire
again in 99, my diagnosis was changed to PA.  I've been working the gamut of
meds ever since with nothing like the previous remission appearing.  So, if
you have any more specific questions, I will try to answer, but of course
each person's experience is different.

As for general advice, have you found the psoriasis newsgroup?  They aren't
as prolific as this one by any means, but will jump in with advice when a
question is asked.  Also, one member maintains an FAQ and resource list, both
of which may be helpful.  She posts that info frequently (biweekly?) so it
shouldn't be too hard to find on Google groups.

Also, I highly, highly recommend the National Psoriasis Foundation.  They
have oodles of information, both scientific and of the "it works for me"
variety.  This includes both treatments and tips for dealing with the
itching.  They can be found at psoriasis.org.  You can join as a full member
for as little as $1.  They also support research in a huge way and have
helped discover several key elements in psoriasis and auto-immune,
inflammatory diseases ingeneral.  Lately they've been doing a lot more in the
PA area along with psoriasis itself. It's a great organization.

I really feel for you having pustular P and having it so extensively.  While
my Ps was in really annoying, tender ares, it was limited to inverse and
plaque varieties and probably never passed the 5% coverage mark.  I never
realized just how fed up with it I'd become until my current PA meds cleared
the psoriasis for me.  It's so wonderful not to be covering up all that
itching in social situations these days!

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

d'huit - 14 Apr 2005 20:44 GMT
just wanted to say, welcome home and i'm sorry you are
hurting,(((((((LID))))))))).

kate
> Hi everyone.  I need to know if anyone here has PA?  I used to lurk
> here years ago, and I know there were a few people then that did have
[quoted text clipped - 17 lines]
>
> Lurker in Disguise
PattyDFX1 - 15 Apr 2005 20:50 GMT
Hi...
  Didn't see your original post, so, I'm piggybacking Kate's : )  I
have PA and RA. PA was dx'd at age 28; RA added at age 36. I'm 47
(yikes lol!) now.
  I've tried most of the drugs without much success. The most amazing
drug for me was Remicade. It completely cleared my psoriasis and my
joint pain and swelling were almost non-existent for 8 weeks. Sadly, I
had a life-threatening reaction after the 2nd infusion and had to stop
taking it. Arava, Kineret and Enbrel didn't help at all. But, they DO
help many others. For now, I'm flaring and holding at 20mgs/wk of
methotrexate by injection, 15 mgs/day of Mobic and a lot of pain meds.
Hoping like crazy that one of the drugs in the pipeline will be the one
for me. Seems that PA is often harder to get under control than RA. I
hope you have a good rheumatologist who is willing to put you on some
of the newer drugs. They've helped so many people. If your current
regimen isn't working, it needs to be changed.
  As to the psoriasis, mine is severe. None of the drugs except
Remicade cleared it at all. I'm 70% covered right now and hope to clear
down to 50% once I get out in the sun again.
  Something really important to know though, is that plaquenil is
generally contraindicated in those with psoriasis. It can cause a
massive exacerbation. It did for me. It landed me in the hospital,
completely dehydrated from one of the severest cases of pustular
psoriasis they'd ever seen. Mostly, I have full body plaque and guttate
psoriasis. But, my hands and feet get pustular during winter. Temovate
cream and keeping them covered and moisturized helps a lot. Getting off
the plaquenil calmed things down considerably. So, if you're still on
it, please talk to your doc about getting off of it ASAP and starting
something that will help rather than aggravate. While my psoriasis is
almost always severe, methotrexate keeps it in check a bit. When I've
had to go off of it for surgeries or infections, my psoriasis flares
with a vengeance. Hope this ramble helped some. Hope you get some
relief soon.
--
Patty
Hoping your hills are never too steep.
 
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