Hi all, my GPA has flared after a few years of being stable, (damn it, was doing so well).
As well as increased anca, I had pain in the joints in my fingers and really bad fatigue.
My rheumatologist set up 4 rituximab infusions 1 week apart. By the 3rd infusion I was feeling good, both fatigue and joint pain had gone, however it is 2 weeks since my final infusion and both joint pain and fatigue have returned. I am not due to see my rheumatologist until beginning of July.
I know that rituximab can take up to 6 weeks to start working but I find it strange that it improved and then gone backwards and it has been 6 weeks since my first infusion
Has anyone else experienced this?
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stuc
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Hi Stuc, sorry to hear about your issues. Give it a few weeks, I was told after I had my first Rituximab that in some people it’s a slow burner and up to 12 weeks to start working as we are all different. I got worried when after about 12 weeks I was getting aches and pains in the same places I had pain when I was diagnosed and was convinced it was the return of the ANCA but it wasn’t, it was the Rituximab doings it’s thing. Sometimes the aches and pains can be identical. Be alert but give it a chance.
I had my last infusion 15th March 2021, I have since had my last Astra vaccine injection and I have not been right since. I have PAN, my legs are painful with red marks all over them and hard painful lumps below the red marks, I know that this is the symptoms of PAN but it has never been so bad since I was first diagnosed. The nerve pain in my feet has also intensified leading me to increase my Pregabalin. I have a face to face with my consultant in three weeks and will be raising my concerns. Does anyone else have any suspicions concerning the vaccine?
Dave I got 2 pfizer jabs within 3 weeks I got the last one March. Good Friday I had crippling lower back pain, sore bum cheeks when I sat and legs and hips felt strange. I thought I had maybe hurt my back but after 2 weeks I knew it was my nerves I phoned my consultant. I got through to his secretary who told me to phone my GP. Got through to them eventually and the receptionist told me to phone back the next day. I did and couldn't get through so I just got on with it. I had it until May 4th. The secretary had said I had no change in my medication but after I realised I did have them pfizer jabs. I have recorded all the symptoms I had and when I get my next infusion I will be speaking face to face with the rheumatologist and I will not be getting any further vaccines\boosters etc.
I recall that before my diagnosis my vasculitis symptoms did seem to come in waves. I kept thinking I was improving, then it would hit me again. Maybe you were just in between waves and the Rituximab has not yet kicked in.
Chris - Your description of "waves" is exactly what I say! I am not in remission, not even close, last 2 blood labs report "increase" in all of the bad stuff after 25 weeks on methotrexate 20 mg weekly, prednisone 5 mg daily (was on prednisone 20 mg daily for 5 months tapered down due to crazy side effects) and also plaquenil 200 mg twice a day). Even on all of these meds, I have "waves" of being just plain sick, fatigue, painful joints, muscle pain, nasal sores, bleeding from the ears, the "works"! The mtx is taken on Mondays, starts to work around Wednesday and wears off completely by Friday night. The wave takes over until the next dose of mtx on Monday. Ridiculous. I think 25 weeks is enough time to say THIS IS NOT WORKING. The mtx has nasty side effects: massive intestinal cramps, dizziness, nausea, etc. Trying rituximab, waiting for appointment to start it. Other folks in this group have given positive reviews. I have nothing to lose. Sorry for the rant, but waves is the PERFECT word! Thanks.
Hi Stuc, I always felt really good after my infusions my rheumatologist told me it was because of the high dose prednisolone infusion beforehand.. I get it every 6 months and was supposed to get it Dec 2020. I was booked in for February then they cancelled it so I could get covid vaccines. I got them March and I am still waiting.... Getting it tight now. All the best.
Hi StuI hope you gradually ( or quickly !!) begin agsin to feel the benefit of the infusions. It would seem that there are no 2 cases the same with these dreadful diseases and our individual reactions to the treatments. I felt really well after my infusions ( first month) which was great….. however progress slowed and slipped back ( infusions were sept/ Oct 2020) and two months ago it was back to cons and second opinion which I still await . The improvement is put down to the infusion mix which contained a fair whack of steroid… so of course I was feeling better and symptoms improved . It may take a few weeks more to again feel any benefits …. I hope so but if not get back to consultant rapidly and keep at them !!!! I also vonvinced that this better weather with warm sun… the increased time in outdoors and garden with fresh air considerably helps me to live with this … it doesn’t make it go away but it helps. Good luck !! Kind regards A
Hi, sorry you’re going through this. The first time I had Rituximab (initially I had two rounds, two weeks apart) I actually continued to feel unwell with a lot of joint pain especially in hands and feet, severe chest pain enough to warrant A&E and leg pain that made walking hard and extreme fatigue. This lasted about 8 weeks and then started to ease off. My Rheumatologist said it was the Vasculitis still fighting back until all my b-cells were depleted. I was the same a year later after Rituximab when I relapsed. I now have it every six months and it gets better each time. I would still report your current status to your Rheumatologist.
It’s almost certainly the methyl pred premeds. I have osteoarthritis & GPA and those pre meds always give me some temporary relief. I’ve had lots of rituximab and it works in a v subtle way but when it gets going it’s great. All the best.
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Annie
Three weeks until my next rituximab infusion, and I feel dreadful. Is this the usual pattern?
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