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Reactive arthritis

I just joined the group today and I can't believe that no-one seems to have mentioned reactive arthritis yet. I am a 71-year old male who is (was) physically active and relatively fit. Until my T1 Grade 3 bladder tumour (with satellite tumours and carcinoma in situ). I had a TURBT followed by 6 BGT treatments. After #5, my joints started to swell and hurt badly - fingers, wrists, elbows, knees, ankles, toes (the lot). From regular long walks, kayaking, cycling and swimming I was reduced to negotiating stairs like a crab, one step at a time and hanging onto the banisters; walking slowly with two sticks; shaving left-handed; unable to hold a pen; you get the picture.

Anyway, they say that reactive arthritis is a less-common side-effect of BCG, that my auto-immune system has over-reacted and is now attacking my own joints. My GP prescribed the NSAID Naproxen (1k mg daily) which eased the pain a bit; now he wants me to go on the corticosteroid Prednisolone (10mg daily) as well. Tomorrow I am to have my follow-up cystoscopy and I will ask the consultant whether the steroid is likely to undermine my therapy as it apparently suppresses the auto-immune response.

Sorry to rabbit on but I wonder whether anyone else in the group is having (or has had) a similar experience.

  1. "BCG" not "BGT" (fat-finger syndrome - literally!).

    1. Hello, and let me echo Liz's welcome to you as well. We do have this article that touches on BCG reactive arthritis - https://bladdercancer.net/clinical/bcg-reactive-arthritis but I would also be very curious to learn if/how your doctors verified this side-effect since it is a relatively rare reaction. Thank you for talking about this! Amanda (BladderCancer.net Team Member)

  2. Thanks. I had read that article before posting and found that it describes my symptoms precisely. I was just surprised that nobody had mentioned reactive arthritis in the forum. My urology consultant is in no doubt that I do have reactive arthritis and says that another cycle of BCG could have a more serious reaction and put me in hospital. He is not going to continue with BCG but is probably going to start me on a course of hot Intravesical Mitomycin (depending on the results of yesterday's biopsy). He also endorsed my GP's prescription of a corticosteroid instead of the NSAID Naproxen which has only been partially effective. Perhaps I should mention that I did have a bit of osteo-arthritis in some fingers and toes before; it just got exponentially worse after the BCG treatment.

    1. @multifield - so sorry that you have had this side effect from BCG. I have heard of people on other sites who are dealing with that side effect. I wish you well in your optional treatment. I am happy to hear that your doctors related the RA to your BCG treatment before you went through more of them. My best to you. Linda ( moderator, Bladdercancer.net team member)

  3. Many thanks, . I had thought that the arthritis was a price worth paying if the CIS was going to be eradicated but the urology team wouldn't hear of it because the consequences could be serious. Now I am putting my faith in the Mitomycin (and God, of course).

    1. @multifield - Hoping that the mytomycin works for you. I have seen several people post on this site and others that they are using that option. Please keep us updated on how the treatments go and if it is successful for you. My best to you. Linda ( moderator, Bladdercancer.net team member)

    2. @mulltifield - it is interesting that reactive arthritis has come up on this site as well as another that I follow. A women on the other site mentioned tingling in her hands and arms following a series of BCG treatments. Her doctors were not willing to continue with his and took the same route as yours. I wish you both good luck in successful treatment and getting rid of the side effects of earlier treatments. Linda ( moderator, Bladdercancer.net team member)

  4. After dose #8 BCG had a achy hands. This was accompanied by a T-101.5. Hoping #9 reaction is not so strong.

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