• Auto immune reactions

    Asked by SandiA on Saturday, October 21, 2017

    Auto immune reactions

    Hi, I am 15 months out of treatment. I was on a clinical trial for stage 4 melanoma. I took a combo of yervoy and opdivo. The results were amazing and though they don’t say cancer free my scans have been great. I ended up with rheumatoid arthritis as a side effect of the trial. I have been treated for the RA with steroids and now have a vascular necrotic in my left hip from the steroids and need hip replacement. I am currently trying to reduce the steroids slowly so I don’t have an RA relapse and am taking plaquenil to help with the RA as I lower the steriods. Saw my doctor yesterday and he said I am not alone. There are others out there that were on the same trial with similar joint issues. So I am wondering are there others on this site with similar issues and what has worked for you. Thanks in advance. Sandi

    4 Answers from the Community

    4 answers
    • Molly72's Avatar

      I had melanoma many, many years ago when the only treatment was extensive surgery.
      Then six years ago I had two more sarcomas & many surgeries for pre-cancers all over my body!

      A couple of years ago, I also ended up with severe R.A. It is in my hands and feet, and I believe, in my lower back. I am in constant pain & my hands are headed towards total uselessness.
      As you are aware, the latest treatments for R.A., are contraindicated by cancer, so forget all those wonder drugs you see constantly in ads. Just read and heed the fine print in those ads & make sure your doctor does as well.
      I tried methotrexate, & it about ruined my lungs. I also tried another R.A. miracle infusion drug, which at this time of the A.M., I can't remember the name. But it didn't do a thing anyway.
      So what do I do for pain? Man up!!! Sit down, hot water, cold packs, & big doses of pain meds. It has changed my life much more than cancer ever did!

      My rheumatologist has no more answers for me at this time, but maybe in the future someone will come up with a miracle drug. if you find a solution, let me know.

      about 1 year ago
    • SandiA's Avatar

      Thanks Molly, sounds like we are in the same boat. Right now the plaquenil seems to be working but I am sure it will come with its own side effects. Like you said all the other drugs have issues with cancer so can’t take those. I am also on blood thinners so for pain I am only allowed Tylenol which does nothing. So basically I have been on steriods forever, but that has caused other damage so I can’t do that much longer. If I come up with any solutions I will let you know. Hang in there. I agree this has been harder to deal with than the cancer treatments.

      about 1 year ago
    • buffcody's Avatar

      The good news, SandiA, for some of us like you and me is that the immunotherapy performed miracles with the cancer but left their own problems in their wake. I had two rounds of immunotherapy during my 5 plus years at stage 4 melanoma. First round in my first year was Yervoy. Autoimmune complications of this, which continue to "keep on giving," were two toxic thyroid reactions, Grave's Disease and Hashimoto's Thyroiditis. Those ended with me killing off my thyroid, so I am dependent on daily pills for my thyroid needs. Next came hypophysitis leading to permanent adrenal insufficiency. Add 15-30 mg, hydrocortisone daily. Then near the 4 year mark, another inoperable tumor led to a year of Opdivo with one dose of Yervoy to kick it off. Within a few month, type 1 diabetes. Consequence: Insulin 4 times a day with me as injector. Finally, complete response, NED for melanoma. Follow up. Another autoimmune disorder that makes it hard for me to walk and even stand up and remain standing up under some conditions. Signs of lupus, but probably not classic lupus. Diagnosis still going on (for 3 months now).

      The autoimmune drugs are wonderful. I'm alive and am glad to be so and to have been able to knock out the cancer that was supposed to kill me. The autoimmune drugs are not so wonderful. They sure have made my life, which I am grateful for, harder to live.

      about 1 year ago
    • SandiA's Avatar

      Thanks buffcody, wow you have been through a lot. You are right we are alive and for that I am very thankful. Knowing what I know today I would still take the opdivo. I am learning how to deal with my new normal. Hang in there. I guess I didn’t realize until recently there are lots of us out there with similar issues. But very happy to be alive

      about 1 year ago

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