Rheumatoid Vasculitis

[sunshineday]

Hi, does anyone have Rheumatoid Vasculitis and lung problems as well? My hubby has both along with RA, bronchiectasis, asthma, peripheral neuropathy and several other nasties. Having had a nerve biopsy the vasculitis has now been confirmed and it is likely that rituxamab will be prescribed as the other option cyclosphamide (?) Is a definite no no with other health problems. Hubby had a bad reaction to omalixumab for his lungs some years ago so has not been on any biologics for his seropositive RA, just HCQ and sulphasalazine. Do any of you have vasculitis with existing lung problems or take Rituxamab with existing poor lung health, if so how did you get on? Hubby's lung, RA and Neurology consultants are all involved, his lung consultant has advised re risks but thinks hubby's between a rock and a hard place.

[Mooka]

Oops just replied to you in the dodgy lung thread 😳

[eh66]

When I was first diagnosed, I was treated with 2 rounds of cyclophosphamide and Rituxamab; one directly after the other. My consultant's argument for doing this was that he could give me lower doses of both drugs. Maybe this is an option in your husband's case too, since he won't be wacked with high doses of Rituxamab.

Also perhaps your husband's lung condition can be improved with a Powerbreath device powerbreathe.com/whos-it-fo...?

[sunshineday in reply to eh66]

Hi eh66, thanks for your reply. Cyclophosphamide has been ruled out because of hubby's multiple Lung problems and the existing lung damage, but thank you for suggesting it. Hubby has been using a Powerbreathe since 2013 and it does help. Hope the treatments have helped you.

[Oldharry]

Hi sunshine day. I'm 78. Asthma from birth.Given Cortosone for nearly 30 years from age 13 then they discovered it to be dodgy for such long periods. been off it foy years but now back on low dose. I have Asthma,Bronchietosis, COPD, Lymphodemia, Anca Vasculitus to name a few. At one time under 10 Consultants. Had 2 courses of Rituximab. Last one over 2 years ago. I'd had many other things before that didn't help. It was pretty good for me but we're all different. Only bad side it get's rid of your immunity. I've been shielding for long before Covid. Darn't go near anybody. They seem now to forget all us endangered 'No Immunity' people. Best wishes. Be positive ( fight,fight, fight )

[sunshineday in reply to Oldharry]

Hi oldharry, thank you for your very helpful comments. Like you I have had ongoing steroids for many years, since my mid 30s, including several wedge courses a year and have been on maintenance dose of 5-10mg daily for about 8 years for both my lung problems and my RA. I am so pleased to hear you found Rituxamab helped you and it gives me some hope that it might stabilise my Rheumatoid Vasculitis. Again, like you even before Covid we shielded as the risks of catching other people's bugs was a no brainer. Just hope my lungs are ok with the Rtx, but as you say stay positive, don't give up and don't give in.