new user

Hi gigi21,
Welcome to the board.  I too have PA also dx since last spring.  Most people use the rheumatoid arthritis page which you will find by selecting at the bottom of the page.  Lots of people there have PA and they will be of great help to you.  I am also new so am also on the learning curve of this.  At first I found the page scary as there are people there who are badly affected by both PA and RA but as you read various posts you will find there are people suffering at all different levels.
Chris

Hi and welcome to both of you.  I'm one of the triples - RA/PA/OA.   PA has been the most painful and has been the most difficult to control with DMARDS and biologics.  I can't explain to you why, I just know that PA is by far the worse of the lot.  I have PA in my hands, wrist, elbows, shoulders, feet, toes, ankles, and back. It has taken 3 years, and many meds before I was prescribed the right combination of meds.  It wasn't because I had bad docs, it's just that I didn't respond or keep responding to the meds.  I've now reached the point where I'm 75% better and it's like a new life.  I'm facing knee replacements, with the first surgery next Monday.  My goal is to be golfing in 3 months.  3 years ago I was homebound and on a really good day I used my cane.  I've come a long way.  There is hope

Both of you are newly diagnosed and please listen carefully to me and remember this......what will save you will be PATIENCE.  You have to be patient.  The meds don't work overnight.  We're so used to popping a pill and feeling instant results.  It's hard to take medications that can cause diseases, have severe side effects, and not expect to get overnight relief.  I was on Remicade for 5 months before I felt any change and it still took 3 medication adjustments for me to reach this level of change.  It can be a long journey.  I have a feeling your journeys will be shorter because your disease was caught early.  RA had been lingering around for about 3 years and I ignored it.  When I finally couldn't get out bed I decided that something seriously was wrong with me.  I went to the doctor and found out I had a blown disk in my lumbar region and a severe onset of RA.  Pa was diagnosed 6 years later. 

This is my PA story.  The journey has been long and hard and I learned patience.  Lack of patience will add stress, depression, and additional pain to an already stressed body and mind. 

Take care and come on over to the RA posting site.  You'll get much more feedback. Lindy  

 

 

Cathi, welcome and feel free to join in on the RA forum.  Most of us hang out there, because there is more of them, and most have been through all of this stuff. 

There are a lot of people that get relief from Humira.  I did not get enough relief from it so I have gone on to Remicade.  I did four shots of the Humira, and it just did not do enough.  Repost your question on the RA forum sight and you will get a lot of answers.

I'm not going to become an Enbrel avangelist...but seriously, it does work.  I was laid up in bed for weeks before getting on it, and now I can play tennis again, and I just ran a 5k (barely).

If you have a choice, ask for Enbrel.  I was fearing for my life when I was in all that pain, and now I'm living in near peace, with minor pains...but who doesn't live with some kind of pain.  At least I'm not bed-ridden any more.

And, Enbrel is safer IMHO, than MTX, and Naprosyn, Folic acid, Omeprazole are a waste of time, again IMHO.

I did just order some new OMEGA 3s to try to help too.

Best of luck with this sh*tty gov't testing disease (my conspiracy theory)


Edited by acer152

Well I've been diagnosed with PA for about 7 months now, and are on MTX and Remicade and just had my dosage doubled up to 400mg, and I'm a full-time college student (25) working a full time job after classes 3-11pm so needless to say, I'm a pretty active guy and the pain seems to flair up now the last 2 weeks before I get my next infusion.

In terms of effectiveness of the treatments, it started out amazing for the first few and was able to run for the first time in four years!  But I ran into problems unrelated TO the disease (Abscessed tooth, impacted wisdoms) and from there things started going downhill fast.

First off, use of the immuno suppressants has to stop to prevent the abscess from spreading, and apparently having to wait a good 6 weeks with crazy tooth/head pain until it was cycled through so they could do the surgery, then another 2-4 weeks for it to heal up and make sure I was back on track...

Since then its been the rollercoaster from hell,  I contracted Mononucleosis from my significant other at the time, and about 3 weeks prior to now, I'd just started to recover, and the effects of the Mono started a few days after my infusion and the fevers, exhaustion and all that fun noise lasted near two full months!  Finally that seemed to go away, minus the exhaustion, I felt tired but NOT completely out of energy, but my RD decided we can still go through with the infusion, and It wasn't pretty, and a week through from that I came home from work with a 105 temperature, even though everyone I worked with and my roomate told me i FELT fine.  8 Hours in a hospital with IV's and whatnot... 3 days out of work, and two FULL prescriptions of Zithromax (Illergic to penicillin), It FINALLY cleared away, and at this point I missed enough classes to have to drop one and nearly put me in danger of failing all of my classes as I missed SEVEN weeks of classes!

However since this last double dose things are stable again, I have energy (somewhat), more so in the evenings than in the morning, and my attitude has moved from a somewhat depressed state (in which I'm always a chipper calm happy person who laughs at everything) to near normal again.

So in my experience with Remicade, stay at 1000 feet if you're sick because it's one HELL of a ride, and if you do get sick, make it a point to take care of yourself because if you rush into work more concerned about a job with the suppression, you really will take a severe hit if you try to push yourself.  If I was smarter I would have spent a bit of time in bed recovering instead of rushing from class to work gettin next to no sleep for days on end with the initial symptoms.  Maybe then I would not have missed almost two full months of material.