Rheumatoid Vasculitis and Bronchiectasis and other lung problems

[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.

[Caspiana]

Hello Sunshineday. 😊

Long term RA sufferer here, along with Sjogren's syndrome and Raynaud's. I was on etanercept (Enbrel) and infliximab (Remicade) for many , many years. I also have RA induced lung disease for which I had to have a right side lung transplant in 2019. I cannot really help with your question, but I would say his doctor seems to be doing the best possible to help him. My oldest sister also has RA and she has been on Rituxamab for a very long time. She cannot do without it. There are risks for every medication under the sun, I got side effects but I could tolerate them and the treatment helped me. If his RA goes untreated this could lead to a rather undesirable outcome. It is a very vicious disease. I hope things go better for your husband. Best wishes.

Cas xx🌼

[sunshineday in reply to Caspiana]

Hi Cas, thank you so much for your helpful comments. I kno

[sunshineday in reply to Caspiana]

Hi Cas, thank you for your helpful comments and best wishes. I know we are all different HU is not a clinical forum but reading and sharing experiences does help to put things into perspective. These autoimmune diseases seem to like to work in groups rather than by themselves as so many people have more than one. Posters are so sympathetic and it's a real boost to know that others are so caring even if they don't know you physically. I always read your posts and am always amazed at how positive you are no matter how rough the going, although I know attitude is key element to overcoming things. I hope you are feeling brighter and that Chom is keeping well. Take care and warm wishes. Joy xx

[Caspiana in reply to sunshineday]

Thank you. xx ❤️

[Alberta56]

It sounds as if the consultants involved in your husband's treatment will have to do a delicate balancing act. I hope they get it right soon. I can't give any medical advice, but am sending loads of good wishes to him and to you. xxx

[sunshineday in reply to Alberta56]

Thank you Alberta for your good wishes, they all help to make us feel brighter. Just hoping whatever is decided is the right one. xxx

[Izb1]

Sorry to hear of your hubbys health problems, I wish I could advise. I have bronchiectasis and rheumatoid arthritis but have managed so far on methotrexate and the odd steroid shot in my bottom. I came of Baricitinib when my friend got shingles on the brain from this and sadly died. I now have a very good rheumy doctor and talk things over with her and would trust her judgement on meds. I hope things go well for your hubby and he gets on the right meds for his conditions x

[sunshineday in reply to Izb1]

Thank you Izb1, so sad to hear about your friend, it must have been such a shock. It's always a difficult choice about meds and we just hope the drs get the right balance Best wishes x

[Izb1 in reply to sunshineday]

I think she was just unlucky and must have come in contact with chicken pox as it started in her eye and travelled to the brain. Baricitinib side effects say that you are susceptible to shingles hence the reason i came of it. I was just coming round after sinus surgery when I got the text to let me know she had died, so very sad x

[Mooka]

You may be better posting on the vasculitis thread. I’m the other way round. I have vasculitis and was treated with rituximab. My weakened immune system led to me having a lot of chest infections and eventually Bronchiectasis. The rituximab was great for my vasculitis. I haven’t had any for five years and I’m in remission with no steroids. I now have to deal with the low immunoglobulin levels. BTW only 5% of us have this reaction. I agree with your lung consultant for what it’s worth. When you have the first infusion they will go very slowly and monitor for any adverse reactions. Good luck with whatever way your husband decides to go.

[sunshineday in reply to Mooka]

Thank you Mooka for your helpful comments. I did post on the vasculitis site but haven't heard anything yet. Hubby had a nerve removed from his wrist to confirm that it was rheumatoid Vasculitis although the consultants were pretty sure. So glad you are in remission and hope it stays that way. Best wishes

[Metal-legs]

Isn't life cruel throwing one condition at you, but when several conditions are involved it really is evil trying to manage medications that don't make the lungs worse. I have RA and bronchiectasis and have found tocilizumab and nebulised antibiotic works best. My rheumy won't prescribe rituximab as its an infusion and treatment cannot be paused if I get a serious infection. I really hope the consultants can all come together and make a plan for your hubby, so that he can move forward. Wishing you both the very best x

[sunshineday in reply to Metal-legs]

Thank you Metal-legs and your comments raise the main concern we have about having an infusion. If you're on tablets you can just stop them but if it's an infusion once it's in your system there's nothing that can be done I don't think apart from having more meds to try and combat the reaction. That's one of the issues we'll be raising shortly as we're waiting some blood results. Autoimmune diseases are never easy as they never seem to come along in one's, invariably two or more. Take care x

[Metal-legs in reply to sunshineday]

Yes it's a very difficult one, the consultants should be able to advise your hubby. But you are right infections could be more difficult to treat if your hubby developed one straight after an infusion. Best of luck for you both, I am sure there will be a positive way forward.

[Aingeful]

I have pulmonary fibrosis and am on Rituximab infusions, so far so good,No major side effects.

[sunshineday in reply to Aingeful]

Thanks Aingeful for comments re Rituxamab, so glad they are helping you and no nasty side effects.