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Reactive Arthritis?
Do I have "reactive arthritis"?
Following the completion of 6 BCG treatments on March 19, I am having consistent moderate to severe pain in the band around my two hips. I have not had any prior issue of arthritis (save sciatica I experience on rare occasions due to a bad back). In addition, when I complained of increased incontinence following the CBG treatments, my doctor told me this is to be expected and will not last. So far, this has not been the case.
As a matter of fact, I can clearly recall getting off the table for my fourth BCG treatment and having a sharp shooting pain in my right hip which I mentioned to the nurse. She said nothing at the time and I did not mention it to the doctor. However, this has continued and gotten worse.
At any rate, a long while after I did mention that I am having this pain and he said it was probably not attributable to the BCG treatments. He wanted to make sure I did not have any problem with my kidneys so he sent me for a kidney scan. The results were negative.
I am in the process of finding information about reactive arthritis and so far what I see - fills me with anxiety. Although it might improve and lessen or continue on to present as a lasting condition but treatable has created a new concern of course.
Has any member amongst us had reactive arthritis which was diagnosed? If so, what treatment was offered?
I hope all group members ultimately receives encouraging outcomes from whatever treatment they are taking.
I wish to thank you in advance for any response(s) I may receive.
Best wishes,
Bobbie
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I was diagnosed with Reactive Arthritis in Jan 2026 after 6 BCG treatments. I had horrible pain in the knees, back, arms and feet. I could not lift my arms up to comb my hair or even hold on to steering wheel to drive. My family Dr said my whole body was inflamed. He ordered several tests for inflammation and my C Reactive Protein was 44 and my Sea Rate 74 booth elevated. He then put me on Prednisone for 1 month for the pain which help greatly. He also sent me to a Rheumatologist who said my symptoms could come back and I have to go for additional testing and xrays. He also wants me to have blood work if I have another flare up
Good luck finding out if it is Reactive Arthritis but you really need to see a Rheumatologist.
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5 Reactions@ella76
Thank you for your response.
The pain has increased and now presents in my left shoulder, right knee as well as my right hip. My appointment for a scope will be in a couple of weeks and if further tumors are present and a follow-up treatment of
BCG is recommended, I will not do that. I plan on visiting my general practitioner very soon.
I realize only a small percentage who adhere to the BCG treatment have the "reactive arthritis" side-effect but when they do, it is mighty powerful - that's for sure!
I hope you do not have any further flare-ups.
Sending my best wishes.
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4 ReactionsDid you have any kind of infection such as UTI prior to any of the BCG treatments? My Rheumatologist said if I did then most likely I had Reactive Arthritis. He is trying to find out what Antibiotics he can give me as there may be some way to knock the infection out so I won't get flare ups? I don't know what he will do but now my Urologist is saying I may also have BCG Cystitis as my cystoscopy last week showed a red area with bleeding that was not there at my last scope. I have to have biopsy June 5. He thinks its only inflammation as my urine cytology was neg for High Grade Urothelial carcinoma.
I had a terrible time with BCG and will not be getting it again. Hope you feel better but please see your family physician or Rheumatologist as from the description of your symptoms you just may have Reactive Arthritis.
Good luck and let me know how you make out.
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7 Reactions@ella76
I did not have any kind of infection prior to my BCG treatments and I wish I knew why some people have this side effect and others do not.
I hope your biopsy on June 5th indicates that it is only inflammation and that you are OK and clear. You have had a challenging experience and you certainly deserve success.
It appears to be an encouraging sign that your urine cytology is negative.
I am scheduled for a scope at the end of May. My last scope showed inflammation and also two areas which are questionable. Should these reflect the development of tumors, there is no way I will continue with the BCG treatments. I don't know what else will be offered.
Ultimately, I may have to go to one of the renowned institutions for further guidance.
When people refer to being on a "journey" when you have bladder cancer - unfortunately, it seems to say it all.
Wishing you good luck in advance of June 5th and please let me know how the biopsy went.
Sending my good wishes.
Bobbie
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4 ReactionsSadly any treatment can bang you up. I just deal with it. I have trouble walking, stuff drops from my hand, painful back, painful arms. If this is the price to beat it so be it.
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2 Reactions@deidre77
Hope you are well. Just wondering how your biopsy went. Was thinking of you all last week. Hope all is well and you got good results.
Have you seen your family Dr concerning the pain you are having? Let me know how you are doing.
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5 ReactionsHi @ella76
Thank you for thinking of me and your good wishes.
I am aware you will be going for a biopsy today (June 5th) and I hope the results are good. Hopefully, you only had inflammation and nothing more. Your cytology exam was negative so this is encouraging. I completely understand how your test today can produce stress and apprehension.
As for myself, I went to my doctor for the cystoscopy but he would not perform it since only one week earlier I had undergone cataract removal surgery and he was fearful that - should I develop some infection after a biopsy was performed - it might somehow complicate my healing. It was further postponed until July 2nd because next week I will have my second cataract removal surgery. Perhaps I should have mentioned beforehand about my eye surgery but I did not feel it would matter. At any rate, this is my present situation.
The reactive arthritis abated thankfully but it took a long time. I had first noticed a problem following my third BCG instillation and it took until recently for the terrible pain in my hip to cease. The doctor sent me for a renal sonogram to rule out any kidney issues and thankfully it showed nothing amiss. I also had a urine cytology and it was negative. What a tremendous sigh of relief when we hear the word "negative".
I think I will need knee surgery but I am postponing this as well. I had fallen a year ago and then this winter once again on the ice. It seems when it rains, it pours.
I am sending along my very best wishes and please let me know how your biopsy went. I hope it will be a favorable result.
Again, thank you and be well.
Bobbie
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4 Reactions@deidre77
I did have my biopsey today and Dr said he did not think it was cancer but we will have to wait for pathology report to be sure. In fact I just got home and am checking my emails now.
Glad your pains went away but it's a shame you now have to wait another month for the biopsey to get done but your doctor was right to postpone it. I'm sure everything will be fine. I will let you know when I get my report and I'll be praying for your biopsey to be negative.
Take care.
Ella 76
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6 ReactionsOmg, so glad I found this post. I too, had 6 treatments of BCG and had pain in both shoulders, hips, and others joints. My right shoulder hurt so bad I had to lift it with my other arm. My Urologist/Oncologist called it Reactive Arthritis and gave me prednisone with taper for 6 days. It helped tremendously, however after about 3 weeks same pain came back and i went to a Rheumatologist and was diagnosed with Polymyalgia Rheumatica. And put on prednisone (15 mg per day). It has cleared up and I have a follow up next week to adjust the prednisone with a taper program. What I am concerned about now is my BCG treatment has been stopped and not sure what treatment will follow for my NMIBC. My cystosopy looked good but I'm told BCG enables the immune system and prednisone suppresses immune system SO what a dilemma. Anyone out there in same boat? If so, let me know. The scary part for me is Polymyalgia Rheumatica sometimes turns into Giant cell arteritis which sometimes causes vision loss. My mother lost her vision in both eyes due to Giant cell arteritis.
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1 Reaction@ella76 Be careful! I too had sane experience and 6 weeks later mine feared so bad I went to a Rheumatologist and was diagnosed with Polymyalgia Rheumatica (PMR) which requires long term prednisone use. Since BCG stimulates immune system and prednisone suppresses immune system, I am now waiting to see what further NIMBC treatment I will have. I hope your PMR doesn't come back. Keep me posted.