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.

[rabbits65]

Oh dear your poor husband , I do feel sorry for him , what a lot to contend with.

[sunshineday in reply to rabbits65]

Thank you Rabbits for your warm thoughts. We just hope whatever decision we reach about Rituxamab is the right one. If we go ahead and it works without damaging hubby's lungs further - that's brilliant. Thank goodness that the lung consultant has known hubby for about 20years and specialises in Bronchiectasis and is involved with the rheumatologist and neurologist.

[Neonkittie17]

Hi, sorry I can’t be of help on your query for your hubby, but wonder if you might get some posts with good relevance also on the lung foundation message board (think it’s changed name recently). Also think there is a HU vasculitis message board too. Then you have opinions etc from all those health areas. Just a thought. You may of course already have done this. x

[sunshineday in reply to Neonkittie17]

Thanks Neonkittie for your kind thoughts. I have posted on both the lung and vasculitis sites so fingers crossed that there's someone who might help. The consultants and their staff are all sympathetic but all say hubby has such a complex range of illnesses that treating him is far from straightforward but action for the vasculitis is needed sooner rather than later. So just trying to stay positive and thinking don't give up and don't give in !

[Neonkittie17 in reply to sunshineday]

I’m sure they’ll keep him well monitored and I hope Rtx works well for him. I was on it for over 8 years for RA and never had a flare or a CRP raised above zero and had brilliant mobility, but sadly it caused too many side effects for me after four perfect years. We are all different and how one patient reacts is not the same for another .. not at all .. so best wishes to you both and that Rtx will help get your husband’s vasculitis under good control. 🙏

[sunnyweek]

I was on Humira and Methotrexate when I developed pneumonitis/alveolitis in my lungs. My consultant couldn't let me go back on either once I'd recovered, which took 3 years, as he couldn't risk it happening again, and he wasn't sure which drug had caused it. The drug he put me on instead was Retuximab as he said it wouldn't affect my lungs as the others had. So I got the impression that Retuximab is safer for lungs.

I hope your husband is able to get the right help to ease his conditions. I wish him well.

[sunshineday in reply to sunnyweek]

Thank you sunny week for your kind wishes, hope you are keeping well now. It all seems a bit hit and miss, I suppose we are all so different and respond to the meds in different ways. It doesn't help that rheumatoid Vasculitis is a rare disease so there isn't much information available. But it sounds as if your lung consultant had confidence in Rituxamab so that's a positive. It's a case of wait and see once you start any meds.

[sylvi]

I dan't have vasilitis, but i do have lung problems such as copd,asthma and fibrosis. I can't take RTX or biologicals. Hugs sent for you both.xxxxxx

[sunshineday in reply to sylvi]

Thanks sylvi, I do sympathize with you about having drugs you can't take. This decision about rtx is a real nightmare as there's a very great risk if he doesn't take it hubby will not be able to use hands or feet or lower limbs at all. (He can't feel his feet now and has completely lost his balance and has little feeling in his hands). But the thought of his lungs getting worse is also a nightmare. You take care with your lung problems as well and hugs to you. xxxx

[shouty]

I have been offered R'mab for Prednisolone resistant Nephrotic Kidney Syndrome . I too have Bronchiectasis but asked to weigh up the increased risk of chest infection. Renal Consultant said to wait for summer months, already had Covid in 2020 ironically caught it in hospital while being treated for kidneys now got Long Covid as well. It's never easy is it ?

[sunshineday in reply to shouty]

I don't think there is a right decision shouty, it's seems with all drugs it's a case of pros and cons. Just have to hope we make the best choice at the time. Hope you get over your long covid.

[Otto11]

When Humira failed after 12 good years I had an x Ray before starting a new Biologic but it showed a lung ( mass) they called it. After scans it turned out to be several nodules & inflammation . Because of this they decided Rituximab was probably the best choice. I also have Asthma since childhood & now Bronchiectasis. I presumed that Rituximab was fairly safe for lung issues. Regarding the vasculitis though I don’t know. I hope they decide quickly & he can start some treatment asap x

[sunshineday in reply to Otto11]

Thanks Otto for kind thoughts. It's encouraging that the consultants felt Rtx was the best option with your lung conditions. Whatever we decide just hope it's the right decision. All the comments we have received have been helpful as they help us to build up a picture of Rtx. x

[Otto11 in reply to sunshineday]

They took the decision out of my hands & I was quite pleased as having to make a decision for ourselves in these matter isn’t so easy. 🤞for you both.

[tone13]

Good Morning Sunshine day, I've been on biological treatment for 7 years, The first treatment was the Expensive one I can't remember name, but after 2 years, I presume for cost purposes I was put on Beneparlie, spelt wrongly, I was on that for 3-4 years & noticed I was becoming more & more Breathless, I reported it to my doctor & rheumatology nurse & doctor but no one listened, I finally got an appointment for a bronscopsy & it seems I had some sort of fibres in my lungs. "They thought I worked with Aspesstus , ", I've been a postie 46 years,,,,Suddenly they took me off said Beneparlie & I'm now on Retuxibub ,,spelt wrong again...& was getting on fine but due to mismanaged date for next 6 monthly Infusion which is now 2 months late,,, Leaving me in bits at moment,,, bilateral Flares ,Hands Shoulders Neck Ankles,,,never been this Bad,,,,But long story short ,,I've got now Rheumatoid related instineal Lung disease + Rheumatoid Arthritis & type 2 diabetes from Steroid use in " uncontrolled days,,,,which is where I've ended back at but worse all because of Mismanagement, I think your husband would be ok with the Retuxibub one I've had no problems So far...

[sunshineday in reply to tone13]

Thank you tone for your comments about Rituxamab, it's encouraging that your consultant thought it the best option in view of your lung problems. It's horrible that once you have one serious health problem more seem to join in. I do hope that you soon get you delayed infusionTake care

[Blodynhaul]

No experience of that, but really feel for you and your husband and sincerely hope things work out xxx

[sunshineday in reply to Blodynhaul]

Thank you Blodynhaul xxx

[sunshineday]

It sounds as if you have more than your fair share of illnesses. It seems once you have something serious wrong with you more come along to join in. I wish you well with whatever you decide about your back problems. Hubby had RA diagnosis back in 2012 and has never been pain free, then peripheral neuropathy started a few years ago with pins and needles, pain and numbness in hands and feet, then last October he began losing his balance, could no longer fasten buttons etc, cut up food and really began stumbling very badly. Rheumatoid Vasculitis is a rare disease but if you think you might have the start of it do discuss with your neurologist and get some nerve conduction studies and EMG tests done. Take care