Ongoing Pain

Hi all,
I hope you're all managing well in this New Year.
I've had GPA for almost 2 years and have Ruxience infusion every 6 months. I've been off prednisone for one year, worked very hard to get off it due to side effects. I've had ongoing pain in my joints, muscle weakness, oral ulcers and fatigue both physically and mentally. My rheumy says it's not normal since my GPA is considered in remission with ongoing Ruxience. She did say it could be related to severity of the GPA before treatment and it may take longer to recover. Labs are stable but ANCA still present so Ruxience will be at least another 2 years.
I'm stuck in a cycle of exercising to gain strength, then increased pain due to exercising. I'm working with physio and being careful not to push too hard since I seem to injure way easier than before. I'm not back to work yet but have a high stress job so unsure if I will return. I have trouble managing my daily living due to pain and fatigue. I've read this can be a side effect of Ruxience and I seem to get symptoms from medication even if its a 1-5% chance.
I'm wondering if anyone else has similar symptoms, or did but they resolved with time?
I understand we are all different with how our GPA manifested and severity, but if anyone who is on Ruxience/Rituximab has a similar story I'd love to know I'm not alone and there is hope of returning to a somewhat normal lifestyle. Yes, it could be worse so I'm thankful for modern medicine!
Thank you for being there,
Lj

You can have residual effects of GPA even when doctors consider you in a drug induced remission. My doctors defined remission as an tolerable adjustment that did not warrant any new additional treatment. It did not mean i was free of GPA symptoms that caused pain, fatigue, or distress. They would wax and wane in severity and were often treated by increases in prednisone. GPA can also cause significant body damage that may or may not get better and sometimes this damage will require a significant adjustment of down sizing ones life style to reduce discomfort. However, many people do recover a great deal and are able to attain a very active life style again but it can take awhile and patience to see if it happens.

Sorry to hear of your pain and fatigue.
Let me share my experience.
I get severe fatigue if I push it too far. I believe I learned from a member on this site that you can live, if you over do it, you may be fatigued greatly.
I do not have the energy I once had, yet I am so happy to have my hearing back, my eye is doing well and my sinus issues are under control I am so much better. I have energy to work, exercise and some entertainment. I no longer pack a day.

Last week, I did a big spring cleaning effort and was on fire, the next day, I did 'extra' exercise. The following day, after I signed off the computer at work 5:15, I was in my PJs and on the couch for the entire evening. I WAS EXHAUSTED. So, I am finding a way to create new balance. I just ordered a spin bike for at home. Pre-GPA I could do it for 60 minutes,. I am starting at 12 minutes and do not see myself going over 30 minutes. I love riding that bike, I choose to do it at home now to play it safe from germs/sinus issues/ covid... from crowds at the gym. I do walk 30 to 40 minutes a day and at alternate days, I do other cardio but try to not push it too far.

My joints hurt some, but I had osteo arthritis before GPA. It is more than before, but not severe. I am trying to build more muscle, but I know it will be a slow process.
I was on prednisone for 9 months from 60 to 40 for most, then the tapering down. It caused osteopenia. I pray that if I ever need it again, it will be very very short term. Getting off prednisone now for 7 months, caused fatigue. Data states it takes 6 months to a Year to get the ill effects out of your system.
I have had 3 1000mg of Rituxan infusions, which got me healthy from GPA. Next month, I will have 500mg of Rituxan every 6 months. It is my understanding that will be on that routine for next 5 years.
I am not sure if my fatigue symptoms are from pred use, GPA or Rituxan. It is less than when I was in full GPA flare - sickness. when I was in GPA flare, I had to nap every day. On the weekends, one day I was in bed most of day. I no longer have to do that.
My joints hurt intermittently and I use creams when I must use that specific joint, I am starting some yoga, again going very slow compared to what I used to do.
I am also trying to get an anti-inflammatory diet 80% of the time.

I hope you feel better soon. Learning to enjoy and work with my new body reality is an ongoing process.

Thank you for sharing this info:)
Lj

Thank you for sharing your story. I really appreciate this!
Lj

It has been almost five years ago since I was diagnosed with GPA, and currently in a medication induced remission. I still deal with some kind of pain every day. My feet hurt everyday due to having sever neuropathy in my left foot that started with the GPA. But I also get joint aches and sometime muscle fatigue on and off. I am fatigue everyday which I think is a combination of the medicine I am on and the GPA. It is all something that I have learned to live with and not let it stop me too much from doing things I like to do. I may end up being extremely fatigued or in more pain for a couple days afterwards, but at least I get to participate in some normalcy in my life.

I as well appreciate some of the comments already made and plan on taking some advice from them as well.

Ljj - I was diagnosed in December 2018 (at age 48). Sinus, lung and kidney involvement as well as 2 pulmonary emboli that developed while in the hospital. Spent 2 weeks in the hospital and had 7 plasma transfers (plasmapheresis) prior to discharge. High-dose prednisone and 4 rounds of Rituxan. Was able to return to work about a week after discharge and then ween off the prednisone after a couple of (rather crazy) months. Now maintaining with Rituxan infusions twice a year (500mg). Currently in "remission," but things are different than pre-GPA. Have resumed physical activity, but I don't think my endurance will ever be the same as it was pre-GPA. I am slowly coming to accept my "new normal" and I hope/think you will too. There is reason to be optimistic as long as you manage your expectations and refrain from holding yourself to pre-GPA standards. Best wishes with your recovery!

Thanks for sharing.

I am 2 years down the line with my diagnosis. Prior to actual diagnosis I developed an inflammatory arthritis affecting all of my big joints and quite severely my hands. When I got the ANCA diagnosis I was started on prednisolone which completely removed arthritic pain but after 6 months and its reduction I am back in pain. I have rituximab every 6 months. I did have a bit of OA in hips prior to diagnosis but they are much worse now. I also had a lot of nerve damage yo my right foot and leg and developed foot drop which was one of the diagnostic handles. 2 years on I still have some foot drop but it is significantly improved. Im not sure it will ever be gone so have learned to live with it and try and appreciate the small incremental improvements. Generally I have pain every day in my legs , some days worse than others. i find walking good and am lucky I have a dog who needs walked daily. I recently had an infrared sauna which I felt helped my hips. I also started tai chi about 9 months ago and hopefully can get some healing through that. As you say it is different for all of us so i guess i just try and stay active and hope over time i continue to improve. i hope the same for you .