New to the Board

Good Morning! I'm new to this Board, although not to healthcare forums. For various reasons, I have taken a 5+ year hiatus from posting on such a forum, but I have new information regarding my case, which has always been complicated and filled with much confusion, not the least of which has been caused by my treating physicians. For a long time, my pain was not controlled properly, not in that I was not given enough meds, but in that I was given so much, in such bad combinations that my mind slipped aways from em, and I lost myself to pain meds, anti-depressants, anti-anxiety meds, etc. A year and a half ago, I opted to have a morphine pump implanted, which has made all the difference in the world, and slowly I am returning to myself, complete with brain intact, proving to all around me that I was not an addict abusing my prescription meds.

My diagnoses for several years stood thus: rheumatoid arthritis, osteoarthritis, sjogrens syndrome, mixed-connective tissue disease, Hashimoto's thyroiditis, situational depression and anxiety disorders. I was approved for SSDI first time out for the full seven years, and have undergone 17 left knee surgeries (most major, including a replacement at age 37, all failed), 2 ankle surgeries, a left shoulder surgery in which one of the joints was removed. I also need to have my right knee addressed, but my OS is afraid that if we touch the right knee it will go down the road of my left, and I'll be left wheelchair-bound.

I have failed all RA treatments, until this past October when my rheumatologist put me on Plaquenil, which, for the first time, lowered my joints and soft tissue inflammation. He has now added Imuran, which makes me wary as I am prone to salivary gland infections, fevers of unknown origin, and other non-specific infections. I do not want to avoid all contact with human life or live in a plastic bubble, but he fears I also have Lupus, and Sjogrens affecting my internal organs as well as the tear and salivary glands. I'm deeply concerned, becaue I have finally been feeling better, but this medication scares me. I'm working to free myself of SSDI through the Ticket to Work program because I prefer independence, but fear that if I suddenly become prone to infections right and left, I won't be able to achieve my goal.

Any words of encouragement? Sorry i don't have a real question, but I wanted to introduce myself, and return to to the feeling that I am not alone in my struggles against AI disease and how it lays out immune system open to everything out there.

Thanks for listening to me vent. I'd love to hear from some of you.

painfuljoints

I took Imuran for well over a year with no extra infections nor any adverse reactions - unfortunately it didn't do anything good for me either so we stopped it. So it don't think it's necessary to be afraid of it - several people on this board have taken it w/good results. And, like I say, it never did anything to hurt me. I figure anything that might make my life better is worth a try, Hang in there,

Hi, painful, I am another one that has had great results with no side effects while on Imuran. I have been taking it for almost 3 years. My doctor monitored me very closely for the first 6 weeks, I had labs done every other week and then every other month.

I hope if you try it that it works as well for you as it has for me.

Hi Painfuljoints and welcome. I'm really sorry to hear about all you have gone through and that now you are facing dealing with lupus and sjogrens on top of everything else. These AI diseases can be so tricky to diagnose and treat. I don't have any experience with Imuran, but you got some great feedback from other people here. You have found a great forum here with wonderful people. Please ask any questions and also know that we are here for you anytime you need support. It's good to know you can come to a place where people can relate to what you are going through. Take care and I'm glad you joined us.