TNF induced Lupus
Okay this is a bit lengthy topic but I will try to shorten it what I can. I need input on next the move for me. I have a Rheumatologist who is also part of a university research hospital. I have started seeing her PA, who is awesome. After my last visit and much blood testing I was shown to have a positive ANA and positive ANA titer with homogenous cells. They went further to test the lupus antibodies which those specific for SLE were normal. I have been on Humira for two years along with Sulfasalazine. The Humira was a game changer and helped so much but now I've been having a lot more flare activity, rashes, joint swelling, fatigue, etc. The PA told me that I am experiencing TNF induced lupus and immediately wanted me to stop the Humira. In the meantime I'm still taking the Sulfasalazine and she prescribed a low dose prednisone. She states that some patients experience this with this type of biologic. This hospital is doing a trial for this very issue and they want me to participate and monitor the results of going from a TNF inhibitor to a JAK inhibitor. She said they will be changing my medication anyway and this would monitor me more closely. I've not been on a lot of different medications I started on plaquenil, after I was on leflunomide, methotrexate, Sulfasalazine, and finally Humira. All but the last two were stopped for the side effects especially the methotrexate. The medicine they want to change me to is a JAK inhibitor. My question is which JAK is most promising in your experiences taking them. I'm so frustrated rn with the prednisone bc I'm gaining weight and swelling even at a low dose because I also have a pain doctor that has been injecting steroid and pain medications every three to six months bc I also have spinal disc degeneration (two past fusions)and osteoarthritis. He wants me to limit my steroid use due to the effects taking too much can impact your health. I'm exhausted physically and mentally and now worried about the pain and stiffness after stopping the Humira so suddenly. I'm still trying to work during all of this and my job on my feet all the time is taxing on my body. Any offers of advice is appreciated.
Hi,
!
That's a lot to be dealing with, to say the least! I understand where your doctors are coming from, but it would be nice if they could communicate with one another so your treatments are as streamlined as possible. So, your pain doctor makes a good case for dialing back your prednisone usage, but maybe you can talk about holding off on that a bit as you switch medications for your RA? But I also get that you want to limit your steroid usage due to the unpleasant side effects you are experiencing. Also, we do have a sister site dedicated to Lupus and one of our members from that community talked about TNF induced Lupus. I thought you might find the conversation interesting -- https://lupus.net/forums/anti-tnf-agents. As far as which JAK inhibitor is best for you, well, that's going to be for you to decide. As you know, what works well for one person may not work as well for another. That said, I wanted to share one of our contributor's articles about Rinvoq and how it was a good fit for her -- https://rheumatoidarthritis.net/living/rinvoq-treatment-review. And here's a conversation from our forums about Xeljanz -- https://rheumatoidarthritis.net/forums/xeljanz-experiences. I do hope community members see your post and chime in with their experiences with JAK inhibitors so you can get a good picture of the good, the bad, and the ugly of each of these medications.
I do hope you and your team are able to find the right treatment for you so you can start feeling more like yourself and not feel so exhausted and in pain. You deserve that.
Best, Erin, Team Member.Thank you for the kind words and helpful links. I will keep you posted on how things go Erin.
covered it so well, but I just wanted to add my experience to the discussion , it took me 20 years to find the right biologic for my specific RA. It ended being an interleukin-1 inhibitor. It takes so much time and effort to find the right medicine for your specific RA, and while it sounds like the Humira worked, the side effects seem to be not worth the effort. This is something that always seems to crop up with this wretched illness - always a trade off, never an unqualified win. I know this intimately with cancer, pneumonia, heart attack, heart disease, five joints replaced, and living the rest of my life on pain meds and prednisone (just to name a few side effects), and it can really take it out of you physically and mentally. Just another voice to say you are not alone and we get it. Keep on keepin' on, DPM I saw my rheumatologist today and they have decided to try me on Orencia as soon as my insurance approves. I chose weekly injections instead of the infusions. I just want it to work so much. Does anyone have experience with this medicine? I know it's individualized but any input will add to what I've read on the pharmaceutical site.
Hi
. I can't personally speak on Orencia, but I know it is a T-cell inhibitor biologic. Our contributor Monica had to change to a different medication after Orencia stopped being as effective, but she still wrote glowingly about her experience with it: https://rheumatoidarthritis.net/living/stop-orencia-infusion. Hopefully others will chime in with their experiences. Wishing you the best. Richard (Team Member)
