I have been following this forum for a little while and I have found it very informative and helpfull so much so, that I thought I might put my case out there to help guide me on this journey.
In Marchy 2022, was also diagnosed with Pulmonary fibrosis as a result of the vasculities , now 75% lung capacity. Been tapering since December 2022 from 10mg daily, got to 5mg last week, but all along I have felt very tired, more brethless and have this dry cough develop. Following recent blood tests, increases to CRP and ESR as well a slight increase in the ANCA markers, and white cell count normal, my Nephrologist has told me that the Rituximab should have dramaticallt reduced the white cells, so it has had no effect on the vasculities. He has put my Prednisolone back up to 10mg to try to improve my tireness and anxiety, not sure it's working. As an alternative ( the only one offered) is Cyclophosphamide 500mg 6 x 2 weekly infusions. He is about to send me informayion on the drug and then I need to decide. I don't think I have any choice. I would appreciate very much any comments on the use of this new drug and and any personal experiences. Thank you very much.
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HappyLung
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I have a different form of vasculitis - cerebral vasculitis since 1994 when I was 22. Cyclophosphamide was ruled out for consultant fertility concerns until 2012 when I finally demanded it, as my disease raged despite masses of other drugs. I found Cyclophosphamide a very tough treatment. As a young woman prone to nausea from any immunosuppression drug I was likely to have bad side effects. I did. But it stabilised my disease like nothing else has. I am so very grateful I had it. I would have it again without hesitation if I needed it.
Do you have good respiratory care? Wishing you all the best. My Dad had pulmonary fibrosis, though not from vasculitis, but idiopathic, so we couldn’t stop it.
Thank you for sharing your your condition. When I saw the consultant last he likened Cyclophosamide to Domestos as it kills everything it it's path, where's Rituximab is more like a specialist desinfectant, that really was not the best advise for me, it definately clouded my judjement. I will just have to go for it and deal with any side effects as they appear. Regarding my lungs, they still can't tell me if the fibrosis has stabilised or is increasing. I am due to have a lung function test any time soon and starting pulmonary rehabilitation physio clinic in 6 weeks time. Fingers crossed. it's great to get feedback on ones own problems. I wish you well for the future.
Make sure that you are being seen at a specialist centre. It is not unusual to put people on additional immunosuppressive medications as well as steroids. Call tge helpline for advice. I have a very rare form of vasculitis I was erroneously told cyclophosamide was the only treatment. It was a very tough treatment and didn't work in my case!! Call the vasculitis helpline. If you are not being seen at a specialist vasculitis centre ask to be referred.
I am happy with my treatment so far. The diagnosys was fairly rapid, and decided in consultation with myself, a Nephrologist and a Respiratory consultant. But this is the NHS and unfortunately things take a little longer than private medicin. My Nephrologist and the Department is well thought of in Berkshire, so I have great confidence in their ability. Thanks for the advice about the vasculities helpline. I think I may call them for any additional advise. Best wishes.
I have ANCA associated vasculitis (MPA) which was inially treated 10 years ago with cyclophospamide and a tapering dose of prednisolone. At that time this was the standard treatment for ANCA associated vasculitis, as Rituximab was just in the process of going through NICE approval. It worked for me and brought my vasculitis into remission. As for side effects I didn't find them too bad. I felt a bit rough for a day or too after an infusion but I managed to keep going to work. The 75mg starting dose of prednisolone probably gave me a lot more issues in terms of side effects. Chris
Thank you, I am currently on 10mg Prednisolone, but think I should be on more, feeling tired and anxious all the time. I am waiting to hear back from the Nephrologist. I expect I will accept the Cyclophosphamide, I just hope it is soon. Thank you and best wishes.
Hi Happy and greetings from across the pond. My diagnosis type, treatment and diagnosis timeframe, mimic Chris B's so I'll jump in on this thread.
My cyclophosphamide treatments quieted the vasculitis and put me into remission. I didn't struggle with nausea until the last month of treatment and meds helped to settle my unhappy belly. Again, like Chris, steroids caused more side effects and were a bit more difficult to manage.
No fortunately I don't have lung or heart damage confirmed by scans. Most of my damage was kidney and peripheral related. I use Powerbreathe to improve my fitness. Other people on the forum have also used them or similar, Basically I try to boost my physical and immune fitness as much as possible through diet and exercise to cope with the condition and also fight off other infections.
I had 6 pulses of cyclophosphamide which put me into remission but I didn’t feel any better. I then went onto azathoprine which I struggled with. I changed hospitals to a specialist vasculitis centre where I received rituximab. Rituximab does take some time to kick in and you need a few infusions to get the vasculitis under control. Have you checked this out vasculitis.org.uk/about-vas...
If you reduced the prednisone down from 10mg to 5mg in one go you will feel tired. I find a very slow reduction works better for me. It’s often a case of trial and error to get the right treatment that works for us. Sadly it often takes quite some time to get there. Personally I feel it’s a bit soon to give up on the rituximab. I had the full 2 years and stopped because I was having so many infections. After about 18 months I flared and had another 3 but had to stop again because of the infections. I am however in remission and have not had rituximab since 2017. It took a little longer to get off the pred but I’m not on any meds for vasculitis now just meds for my Bronchiectasis caused by the vasculitis and meds. Good luck I’m sure the helpline can help you talk through this but come back and ask any questions.
Hi I was diagnosed 3 years ago with MPA, damaged my lungs & kidneys had 6 infusions of cyclophosphamide over a 6 month period, along with high dose of prednisolone. Now on 150mg of azathoprine and just had prednisolone reduced to 3 mg per day, bloods are staying well balanced and hopefully am now in remission, I have not felt so fatigued now the prednisolone is being reduced. Still get days when I feel wiped out, so it’s a case of good & bad days. Hope all goes well for you.
Hi, I caught covid last March 21. I was told I had diffused vasculitis via covid. Sadly I caught it just before my first vaccine was due. As I've been so unwell I'm concerned vaccine may exasperate it. It's affected my vision, heart, vascular and GI. Can I ask what tests you had please. I just feel left. They want to do a CT colonoscopy, again I'm concerned how my body will react. My hands are getting boney as well. I hate what covid has done to me. I wish you well 💜
Hi, snap, my hands look the same, just a few more hairs, ah ah. In my case I developed P Anca Vasculities, a few days after my 1st Covid vaccine March 21, went ahead with the 2nd vaccine as i was reasonably healthy still. Started off with 25mg Prednisolone and Rituximab, 2 doses in August and 3rd one in March 22. As my lungs were affected, pulmonary fibrosis, I had CT Scans,?x-rays and multiple blood tests. I now am mostly tired, breathless and a have a chronic cough. Coincidentally the cough started after I had the booster 3rd vaccine. Just been told in the last few days that the Rituximab infusions have not worked and they are going to put me on Cyclophosphamide, 0.5 gm 6 doses over 12 weeks. Might explain why I’ve been feeling worse since about December. Fingers crossed this new drug is going to work. Regarding your CT colonoscopy, my wife had one end of last year and she said it was bearable, the only intrusion was the blown air to inflate the large intestine and and intravenous die for better CT resolution. Personally I would get your condition treated and once stable, then consider the vaccine . You can only be guided by the doctors , but ultimately it’s your body and only you know how you feel. I think this forum is great, there are a lot of knowledgeable caring people on it. Best wishes to you.
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