R.A. Without Medication…….Anyone else?
So imagine having R.A. with all the pain, fatigue, and deformities without the use of ANY biologics or medication! That’s the boat I’ve been in since my diagnosis in 1995. If you live in a place that has lots of birds (and what place doesn’t?!) you may be familiar with histoplasmosis, a non life- threatening fungal disease of the lungs. It was discovered after a routine physical exam which included an X-ray of my lungs at age 17. Surgery to remove a portion of my right lower lung was performed successfully, but little did I know what that would mean for me, until my R.A. diagnosis. It precludes any possibility of taking “live” vaccines or medication. Okay, so I still could take Plaquinel and methotrexate…..until I became allergic to both! That is what I have been dealing with for over 30 years, and that’s not all! I’m a walking autoimmune disease, also having Tako-Tsubo cardiomyopathy (“broken heart” syndrome), primary biliary cholangitis (stage 4), fibromyalgia, Hepatic Encephalopathy (a new and rare diagnosis), and spondylioarthritis, and an undiagnosed skin disorder from the toxins that build up in my body due to my liver disease. Anyone else dealing with being in such a “special” and very confining square box, I would love to know?
I mean I have had my medical progress stopped at every turn before, but, admittedly, not the level you are experiencing! It took them 20 years to find a medicine for my RA that I could tolerate and the worked, but the damage was well done by then. I still have a few more surgeries left to do to get my body back to some semblance of normal, but still in the end I am taking a biologic. I can't imagine not having them at my disposal. Hopefully you are able to get some relief! Keep on keepin' on, DPM
Hi
You certainly have been through and continue to deal with a lot. I noticed that you mentioned the issues with live medications and vaccines, but that you can take methotrexate and Plaquenil. Has anyone mentioned JAK inhibitors? I ask because, while they work in much the same way as biologics, they are not made from living material (which is why they can be in pill form). This article from our editorial team discusses these medications: https://rheumatoidarthritis.net/living/jak-inhibitor-treatment. Of course, there could be a very good reason that these medications do not fit your case, but I want to provide the information. Your doctor should be able to discuss this further. Wishing you the best. Richard (RheumatoidArthritis.net Team) she said she became allergic to both PQ and MTX
Vera, I have PBC too. Really cuts out many of the RA meds. My PBC has been held in check fair with Urso. But RA is complicating everything. Hang in there.
Unbelievable that no one in 50 years has ever told me that (had PBC since 22)!!!
Bless you!Vera I was Dx in 2009. If you are not already signed up I strongly encourage you to sign up with the PBC Foundation on their website. They are based in the UK but the world’s best nonprofit organization for PBC. Cutting edge information. You will find thousands of others on there who have PBC. Been a lifesaver for me. They are also the ones who led the work to get the name changed to primary biliary cholangitis. Something I wish the RA community would do since there could not be anything more confusing and misleading for people than the word arthritis. Good luck.
vera, there's a common cause of most of your maladies - gut dysbiosis/leaky gut. it's being found that this is almost a universal cause of chronic degenerative diseases. i would bet that you've had digestive issues before and/or during your disease(s) timeline
Yes, had ulcer at 16 (after father's death) then the liver disease (non alcoholic) at 22! used to take omeprozole, but now just chew a tums! WOWSER...who knew, lol....obviously not the doctors!!! Thank you!
