Sarcoidosis and RA | Arthritis Information

 

I am not new to this forum but have been away for 2 yrs. due to a serious life threatening infection after a surgery. (off all meds for Ra for 2 yrs)

 

I have seronegative RA. I have gone the gamut with drugs, MTX, plaquinel, Enbrel, gold, Remicade.  I developed nodules of which the doc thought were RA nodules, after biopsy it was determined to be Sarcoidosis. I developed this while on Enbrel, MTX and Plaquinel  (these are drugs often used to treat sarcoid) So I am a bit of a mystery to the docs.

 

I noticed that a few of you list sarcoid as a med problem as well. I would like to know more about you that have this co diagnosis.

 

I am seeing a new rheumy now that I am able to start back on meds. I was saddened to find out that I cant try Humira because it contains latex of which I am very allergic.

 

Any suggestions from anyone? I really have only had relief from Remicade. I am in the midst of a bad flare right now of which the pain has brought me to tears. I believe that Remicade may not be a choice anymore since my past illness has left me with no veins.

 

I also wonder if this is Sarcoid symptoms, not RA?

 

 

I would appreciate any input.  ThanksI don't know anything about what you asked.  But will be hanging around reading the answers.  I am sure someone knows.  The knowledge on this board amazes me.Hey, there are people here!  Look of Micheleb! Nice to see you here Barb. I'm real sorry to hear all you've gone through. I hope brighter days are just ahead of you. So sorry that you've been diagnosed with sarcoidosis.  I was diagnosed in 1966, put on high doses of Prenisone (80 mg) taper over a 6 month period.  Sarcoid went into remission and has been in remission since then.  I was tested last year and have been thinking that I might have a biopsy done on one of the nodules I have on my fingers.  Then I can be sure that the disease isn't active.  I never had joint pain with active sarcoid.  I had a low grade temp. and I had a routine chest xray done prior to starting a new nursing job and sarcoid showed on the xray.  They did bilateral scalene node biopsies and they were positive.  Hope all goes well for you and keep us updated.  LindyHey, another fellow sarcoid!!!!!  Sorry you had to join the club but here is my abbreviated story.

Was healthy until I tried to get pregnant at age 33.5.  Had 5 unexplained miscarriages, ran the fertility gamete of tests and drugs, no answers.  After the 2 or 3rd miscarriage, my hands started to swell and hurt, than my feet and I was achy and tired.  Told it was hormones from the fertility.  I got pregnant with identical twin girls and while I was pregnant, I had my first of many bouts of uveitis, inflammation in the yes.  I went on a few weeks later to miscarriages the twins and my whole body swelled and hurt.

Of course every doc I went to said, you are depressed and hormonal.  Ok, that was probably true, considering, but I also KNEW something was wrong.  over the next three years, I have been to more drs than I can count, more specialists, a large university hospital, and have been told everything from JUST depression and overweight (from steroids) to fibro, to ra, to polyrhumatica, the list is long.

I was being treated for seronegative ra.  Ran through all the dmards, steroids for over a year, enbrel, humira, mtx, all of it!  It wasn't until I reached the end of my rope and tried to kill myself.  I landed in the hospital, on a respirator and in ICU for almost a week, than the cardiac until for another week.  They discovered I had two PE's (pulmonary embolisms) three DVT (deep vein thrombosis) and a heart condition called a prolonged QT.

I was let out of the hospital but I was very short of breath, had a dry cough, my chest hurt and my heart rate was through the roof.  One week later, I was back in the hospital.  Cat scan showed nodules in my chest, abdomen, pelvis, and groin.  They first told me I had lymphoma and would die.  They then decided to do a mediastinal biopsy, which showed non ceasating granuloma's, the hallmark of sarcoidosis.

I have been told that ALL my problems are sarc related and NOT ra.  Since I have also already been on all the traditional sarc drugs, they just started me on remicade.  I had my first infusion last Thursday and will go again next week Thursday.

My veins are shot as well.  So much so that when I was in the hospital they had to sew a IV into my femoral artery than when that blew they put in a PIC line.  In my recent report entitled I survived my first remicade infusion, I reported that they actually got the IV in my hand on the first try!!!!  If your veins are really worse than that, they may be able to put a port in and just hook you up to that for each infusion.

I am hoping the remicade is my ticket to feeling better.  I felt great for the first 2 days after, than crashed for a couple of days but now seem to have stabled out a bit.  My hands are still super swollen and painful and I am achy and the usual ouchy spots are still bad but I see an overall improvement and hope with each infusion, it gets better and better!!

Feel free to email me or PM me, I am excited to have someone else to talk to that has sarc!
HI Barb, welcome and sorry for your diagnosis!  Just something to give you hope, my cousin was quite sick with Sarcoidosis,  but he went into remission and is still there 10 years later!  I will say a prayer that you will do likewise.  Regards Janie. Thanks for everyones responses!
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