Migratory reactive Arthritis post BCG maintenance
Hi all, I'm now into my 4th week of suffering through MR arthritis. Just wondering if anyone experienced long term effects and if their MD moved away from NSAIDS due to ineffectiveness and had success with other classes of drugs or treatments ie. Hydroxycloroquine (antimalarial also used for lupus and RA) or cortisone injections etc.
Last maintenance dose of BCG Aug 29/22 first signs/symptoms of arthritis appeared 8 days later. Non invasive/high grade diagnosis Dec/21.
Non smoker, 32 yr career firefighter/paramedic in a moderate sized city (very busy integrated dept). No history of arthritis or trauma to affected joints. Very fit - gym 6 days/week, trail running, biking, hiking, skiing etc.
Recent med/treatment - Diclofenac suppository 50mg BID (twice a day) effective for 4-5 hrs. Dilaudid (hydromorph) 1mg TID (three times a day) not effective for pain control) Naproxen was more effective but at high doses which I didn't feel comfortable with. Moved to Diclofenac PO 75mg BID (twice a day) slight effectiveness but not as effective as the suppositories. Now currently taking Celebrex which has absolutely zero effect. I've recently incorporated acupuncture (which offers some relief for the day) as well as hot/cold therapy (hot tub/ice packs 2x per day). I'll be speaking with my MD and may suggest another therapy or med solution.
Swelling has decreased by 1/2 as of Sept 23rd. Pain is still 6 - 8/10. 3-4 hours of sleep per night as of Sept 6.
Apologies for the long winded details. 
Hi
. I am sorry that you are dealing with so much. I hope that other community members can jump in to share their experiences. Living with constant pain is awful and seeps into every part of your day, I know that it is particularly hard when you cannot be as active as it sounds like you have been for so many years. It sounds like you and your healthcare team have been trying several things to help alleviate your pain, hopefully, they can recommend a new treatment option that will provide you some relief soon.
Please keep us posted on how things are going.
Warmly, Patty (Team Member)Hi Stengy! So sorry for your situation. I have a similar case - i have undergone an introductory course of BCG as well as a maintenance round. I have mild arthritis in my spine and hips (an American football player through college - now I am 60 and feeling it). My cervical spine and lumber spine have pretty significant degenerative disc disease also. I have noticed my entire immune system is supercharged by the BCG - as it should be. I often get hives after eating while undergoing treatment. That is handled by Benadryl. But my hips have worsened and each treatment it takes longer to feel better. Right now I am struggling with my lumbar spine - the pain became so bad I went to my GP yesterday. He doesn’t think it is pure reactive arthritis as I don’t have all the symptoms, but he doesn’t doubt it was flared by the BCG. Am on a steroid pack, a muscle relaxant and Naxproxene. I was pleased how well I felt after 24 hours. Good luck!
@Sailor - Hoping that you continue to feel better and that the scripts work to reduce your pain. Keep us posted on how you are doing and thank you for sharing this information with us. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
l
Thanks for your reply Sailor. I've moved on from the NSAIDS now to Corticosteroids. I'm currently in the tapering phase. The steroids have definitely helped with the swelling and overall pain for about 12-14 hrs of the day/night. I have an appointment with a Rheumatologist at the end of this month. The problem I seem to be dealing with when talking with specialized medical staff is the unfamiliarity with this situation. Although it is a recognized side effect, it seems to be rare enough that experience and overall knowledge of BCG related arthritis is not widely understood or studied. My GP has been excellent and is very understanding, but in saying that, I am much more educated in this than he is. (32 year career in the medical/frontline emergency services field). If this course of corticosteroids doesn't alleviate side effects, then my next course of action I will suggest will be DMARDS/Antimetabolites. I will be starting my next maintenance of BCG Nov 7 and hope to have this under control by then. Like yourself, I played many years of sports (hockey, baseball and still have been staying active with triathlons, trail running, skiing, backpacking, hiking etc). I would like to think that my lifestyle has contributed to my ability to avoid arthritis or chronic pain due to past injuries. I always like to hear success stories like yours....it gives me hope that this 6 week journey of discomfort and pain is hopefully achievable.
- I hope things are better since you posted this information. Can you use any form of leg wraps or similar to massage your legs or would that not work? Hoping you find an answer soon and that your pain is significant reduced. Keep us posted. My best. Linda Urbanski ( moderator, Bladdercancer.net team member) 
so sorry to hear all you have going on. Hoping you find some relief soon. Thinking of you and sends some healing vibes from Scotland. Laura, Moderator, BladderCancer.net @Stensy - I am happy to hear that you are having some relief from pain. I used the leg massagers and they worked for me but may not for everyone of course. Sending good thoughts your way and hope to hear that things continue to improve for you. Please keep us post on how you are doing. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
