Rheumatoid Arthritis or Transplant Medication causing aches and pains

@nrbecerril Hello, and welcome to Mayo Clinic Connect. I think you’ve come to the right place to get help from other members. I included the link to this discussion:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
You will be able to meet many of the members of the group. If you read through the discussion, you may find that your answer is already being discussed. If not, just ask it of the group. I’ll also ask one of our mentors @rosemarya if she has any answers.
Have you asked your doctor if achyness is to be expected?

Hi @nrbecerril, I modified the title of your discussion and added it to the Transplants support group as well. I'm also tagging fellow transplant members like @athenalee @katebw @ssapp1 @msfins, who also live with autoimmune conditions, to see if they have some thoughts or experiences to share with you.

@nrbecerril I had a liver transplant on Oct 29, 2021. I was diagnosed with ulcerative colitis, an autoimmune and inflammatory condition, in my late 20’s, twenty or so years before my liver disease and transplant (at age 53). It is thought that my ulcerative colitis led to my liver disease. It seems to have complicated my recovery though my recovery is so far smoother than I thought it’d be. Sometimes I feel that my medications and overall inflammation from my colitis impacts my recovery. I get stomach aches and can feel inflamed in a general way, I think that my underlying autoimmune condition is adjusting to major surgery. In general I think our bodies take 1-5 years to reconcile with such profound surgery. For me, hydrating and walking everyday are the best balm.

Today my legs got swollen and I could hardly walk. I don't even know what is bothering. It's frustrating. Thank for replying.. so helpful.

In complex situations it’s often difficult to determine what is causing what symptoms. Some general concepts in your case may help you and your Dr sort it out. Always try to look at the timeline of events. Keep a diary or calendar of medication changes and surgeries, etc to help establish the temporal relationship between events.
The problem with both RA and transplant reactions is a hyperactive immune response involving excess antibodies to your own tissue (RA) and to the foreign tissue (the transplanted organ). The goal of treatment for both is to reduce antibody formation and the resultant inflammatory response. So immune suppressants and potent anti inflammatory meds like Prednisone are used. You mentioned you went off the Orencia, an immune suppressant and Prednisone, a strong anti inflammatory steroid. It could be the withdrawal of those that has allowed the RA to flare up. This could be evaluated by measuring the inflammatory markers in your serum, sed rate and CRP. Your rheumatologist and transplant team should be consulting with one another on your behalf to determine the optimal immune suppression drugs and doses. Good luck with your transplant success and I hope your questions will get answered.

Not in your situation but I took Enbrel for 20 years for my RA and I recently had to stop it because I have breast cancer and Im facing some future medical interventions which won't get along with the biologics. The backlash of pain from stopping this medication is brutal. What I don't understand is the failure of medical professionals to adequately address the issue of our pain. It may be your RA causing the pain, or it may be your transplant meds but for heaven sake...why can't they help you with the pain?!? Honestly, Im getting annoyed by the fear doctors have of lawsuits over-riding adequate pain management. -Sorry to vent here but you deserve adequate treatment for your pain. (so do I). Best of luck to you.

@renunciate @nrbecerril Yes, adequate pain management is a huge problem in healthcare. Doctors are actually not given a choice on treating pain. They cannot use many of the opioids today because of the mess that we were in across the country.
Maybe you can keep a journal of the pain, it’s intensity and it’s location
@nrbecerril can you ask your PCP for a referral to a pain management specialist? They can probably help

I'm on cyclosporine, mycophenalic, and prednisone for my transplant and I'm 22 months post transplant at age 43. Never had joint issues prior to xplant, but now my knees have been giving me horrible pain for 1 year and now the bottoms of my feet for the past 5-6 months. It feels like the bones are almost being pressed on in both areas as there is just pressure there I've never felt before. all my knee xray imaging has looked quite good/normal and same with feet, and podiatrist said it didn't seem to be neuropathy bc I have good feeling in my toes, But I know I have had strong temperature sensitivity past 1.5 yrs in extremities. Can someone advise me as to what might be happening and if possibly likely immunosuppressant related. 43 years old and I'm pretty skinny. Thanks all.

What are you taking for immunosuppressants now after the transplant? I'm having knee and foot pain since my transplant, and I'm on cyclosporine, mycophenalic, and prednisone. I think it may be cyclosporine related for me and sounds funny but possibly have to do with kidney function, though my gfr's have mostly been 77-84.

@xplantguy1212 Your pain problems could be related to your medications so you should contact your transplant team.
Will you let me know what the doctor advises?