Rituximab for Rheumatoid Vasculitis

[sunshineday]

hi,. I have Rheumatoid Vasculitis (diagnosed April 2022), RA, Peripheral Neuropathy and several lung problems. I had an infusion of Rituximab on June 2022 and have felt no improvement whatsoever. All my illnesses remain as bad as ever. Anyone else have Rheumatoid Vasculitis and had RTX and have noticed improvement. Thanks

[Investigator1]

Hi sunshineday. I can help in part regarding the RTX. I will be having my 4th blast next month. RTX is a slow burner and it can be 12-16 weeks before it does it’s stuff. When I had my first infusion in November 2020 I was feeling pretty grotty because I had a relapse of my GPA as Azathioprine didn’t work. It was the beginning of April before I could feel normal(ish). Give it a chance sunshine and be patient.

[sunshineday in reply to Investigator1]

Thanks for your reply. It's now 17 weeks since I had the RTX infusions but no signs of improvement. I am on sulfasalazine and hydroxychloroquine for for my RA. I know Rheumatoid vasculitis is rare but when I had a nerve biopsy to find out more about my peripheral neuropathy , my neurologist said RTX should help as they diagnosed RV as well. I couldn't have the full dose of RTX because of my lung problems. I'm not really sure how all the different types of vasculitis react to RTX and if some respond better. I'll just keep on smiling and follow your advice to be patient.

[yogarita1955]

morning

I have GPA and had retixamab and it worked for me so I have a friend with rheumatoid and suggested retixamab and it worked for him are you on steroids as well or methotrexate ??

[sunshineday in reply to yogarita1955]

Hi yogarita and thanks for your reply. I'm glad RTX helped you. I've been on steroids for 34 years for my lung problems and up them periodically for my RA and am on Sulfasalazine and Hydroxychloroquine as well. All other RA meds are a no no because of my severe lung problems and the further damage they would cause. My neurology team hoped that RTX would help my Rheumatoid Vasculitis and possibly help my peripheral neuropathy. I guess it's a waiting game, I have an appointment with my rheumatologist in a couple of weeks, who is now also responsible for the care of my vasculitis, so will see what she suggests.

[treesy]

Hi there, my mum has Rheumatoid Vasculitis as well as RA , neuropathy and Osteoporosis. She has been on Rituximab for five years and it does help her. It did take quite a while, months for it to start working. She has to have two infusions every six months as they tried one infusion and her vasculitis flared up badly. She also takes daily 5mg Prednisolone to help keep the vasculitis under control. Please don't give up hope as it does take months to really start seeing an improvement although I expect it varies with different people. x

[sunshineday in reply to treesy]

Thanks Treesy for your positive reply, it's really encouraging to hear that RTX helped your mum's vasculitis. It really helps to know that it does work and it cheered me up to read how it was successful for your mum. As I wrote to Investigator I'll be patient.

[FryTuck]

I also have GPA (now in remission) and was put on RTX infusions plus prednisolene. I was losing my hearing and suffering with a collapsed nasal bridge - unfortunately this did not improve so the RTX was stopped and I was started on a course of cyclophosphamide infusions for approx 5 months. This put me on the road to recovery. My hearing improved although its not 100%. but I began to feel more like my normal self.

Not everyone responds to RTX - it seems to be trial and error with medication

for GPA.

[sunshineday in reply to FryTuck]

Thank you FryTuck and sorry to hear RTX didn't help you. I'm pleased though that cyclophosphamide has been more successful for you. My neurologist, rheumatologist and lung consultant all agreed thatt cyclophosphamide is too risky and dangerous for me because of my numerous lung problems. It's always good and encouraging though to hear that even if a drug isn't suitable for you it is helpful for others.

[Hidden]

I didn't realize that rheumatoid vasculitis was a thing. I know GPA is one of the 3 versions of vasculitis and that rheumatoid arthritis exists but did not know they came as a combo package. My nephrologist monitors and manages my GPA. I'm in remission now but I had severe joint pain when it was active. I still have some residual joint pain so I asked my neph if it could be RA now. I've read that when you have an autoimmune disease, you are prone to getting others. As far as treatment for the GPA goes, I did very well starting with Azathioprine then went through two 4 week sessions of RTX. I was taking Prednisone along with the Azathioprine.

[sunshineday in reply to Hidden]

Hi LLW, sadly if you have one autoimmune disease it's not unusual to have more. I have just had another two infusions of RTX as the ones last year didn't work and there's a possibility a second two infusions might, although again only 500mg instead of 1000 because of my bronchiectasis and other lung problems. Unfortunately the last infusions didn't help with my RA either. With hindsight we are wondering if the third Covid jab had anything to do with the exacerbation as there have been a number of articles suggesting nerve damage can be a side effect. I can only wait and see and be hopeful. Hope all goes well with you on the future.

[2534]

yes. I had RTX for Vasculitis and have improved. But the improvement has come on slowly slowly without any surge of feeling better. But looking back I would say there has been a 15% improvement and it’s been an important 15% in that I can walk further and participate much more in what others do, can actually go into certain shops, do some volunteer work (I’m retired). My life has become easier, so all in all, for me, life is much easier.

I guess no drug suits everyone and it can take ages to get the right diagnosis and then the right drug for you.

I wish you well

A

[sunshineday in reply to 2534]

Thank you 2534 for your reply about Rituximab and your kind thoughts. I'm pleased that it has had some success for you. I know that patients need to be patient so I am keeping hopeful that this time it will be more successful than last time. Despite my several lung problems I used to be able to have walks on the beach when my breathing was having a good day but since RA, Rheumatoid Vasculitis and Peripheral Neuropathy this is a no no. But I still go down down the beach occasionally and can walk a hundred yards or so very slowly on a good day on the prom, although very unsteady and have support from walking stick on one side and wife on the other. The instability I think is caused by the neuropathy as it causes numbness and pins and needles and I can't feel where I am putting my feet. I know there are lots of people worse off than me so I am grateful for whatever I can do and won't give up or give in.Take care A and hope the improvement continues for you.