Update on change of meds

[tomo1854]

Hi all just a little update i saw my consultant yesterday he has now increased my myfenax from 500mg a day to 1500mg a day still on 15mg preds i asked again about having ritiximab he said to much ritiximab is no good i dont know what he meant by that? I have only had 2 100ml infusions of ritiximab that was when i was first Diagnosed in 2020 my recent anca test was Myeloperoxidase Ab <0.2

Proteinase 3 Ab 4.3 he said all other bloods were ok at the moment my breathing has got worse and my blood pressure has gone up had another chest xray he said no change from the last 1 in August i really dont know whats going on especially reluctance to give me ritiximab because it did put me in remission last time any advice would be appreciated

[Main1234]

hi sorry to hear you are struggling to get into drug induced remission.

Have you contacted the vasculitis help line to discuss or you could send an E- mail for advice.

I have heard that there is some reluctance re RTX due to Covid, but every case and consultant is different.

Hope you are able to find an answer soon.

[tomo1854 in reply to Main1234]

Thankyou for your reply i think it has a lot to do with costs because reading other posts certain areas have no problem getting ritiximab even for maintenance therapy i will keep pushing but i dont think i will get any joy? Meantime my vasculitis is still active doing damage whilst i have to try higher doses of myfenax its not fair

[Mooka]

I’m sorry to hear you are struggling. I agree with Main1234 you should give the helpline a call. If you want rituximab you may be better trying to transfer your care to one of the specialist centres for vasculitis. I know I wouldn’t have got rituximab at my local hospital. Your consultant should be honest with you about the reason for not giving you more. Have you had a ct scan on your chest? I developed Bronchiectasis after having so many chest infections. A lot of people with vasculitis also get Bronchiectasis. I would add that even though my last dose of rituximab was over five years ago (I’m in remission) I have very few antibodies against Covid. Good luck I hope you feel better soon.

[tomo1854 in reply to Mooka]

Hi mooka thankyou for your advice i have had ct scans all show nodules on my lungs my gp(she specialises in rhumatology)said the predisinone can cause breathing issues and it does seem to have got worse since he increased the dose?so am seeing him again in 2 weeks i will have bloods taken again before then incuding anca test to see if anything has improved with increasing the myfenax i will keep trying for ritiximab with my consultant maybe if there is no improvement in 2 weeks he might change his mind? Take care will keep you informed 🙂