Anca vasculitis

[Cookyboy1]

Hi, I have anca vasculitis which started with a rash on my legs and arms in 2018 and now it has progressed and now have it in my lungs, on a high dosage of prednisone, 2 weeks of 60mg and now reduced to 40mg, until the doctors start me on other meds, Have been offered to do a trial if I qualify using tuximubab and belimumab combination over a 2year period, worried about side affects, what's your thoughts on that and should I be worried? Thx

[John_Mills Volunteer]

Do you mean Rituximab and Belimumab ???

[Cookyboy1 in reply to John_Mills]

Yes John.

[Cookyboy1 in reply to Cookyboy1]

Might have the belimumab wrong but definitely rituximab is correct.?

[Lauriescott1]

Not aware of Belimumab but I do have 6 monthly infusions of Rituximab which has served to reduce my prednisone to 10mgs daily and stopped me taking Azathiaprine.

I've had GPA, Anca + Vasculitis for 9 years now and can relate to the rashes you've had which are now generally synonymous with me having a flare. I'm very much guided by my Consultant, who thankfully is very knowledgeable in Vasculitis, as it's control is very much a balancing act of medications to keep it in remission.

I've experienced no problems with Rituximab and would definitely recommend it if suggested by your medical team.

[Cookyboy1 in reply to Lauriescott1]

Thankyou so much for your reply it's has helped to put my mind at rest, I to will trust my consultant as she is top notch and if I am selected for this trial will go ahead with it for myself and others in the same situation as us, will keep in touch at some point on V A S U/K on the out come of my treatment, thankyou ,

[kitkatmum]

Hello, I’ve had Rituximab infusions for GPA and on staggered reduction of prednisone after being on 60mg since November. Had to take the first infusion slowly but no major issues. Hope this helps.

[Cookyboy1 in reply to kitkatmum]

Thankyou KitKat mum, I have been on prednisone on and off as neednd since July 2018, at Christmas this year started coughing up blood and after a pet scan, mri scan, lung camera eventually fund that the pr3 anca vasculitis had affected my lungs, its difficult to understand how ill you are when your on such a high dose of steroids as I'm feeling quite good at the moment, no rash really, breathing not to bad, voice husky with a cough now and again but am told by my consultant that I can't stay on a high level of prednisone indefinitely, so waiting for a phone call now so I can have the meds their going to prescribe for me, looking forward to this happening but a bit apprehensive. 👍👌😊

[loisbrucie in reply to Cookyboy1]

While you are waiting you could try the functional approach, that involves getting to the root of the problem. Why did your body get poorly in the first place, correct the mistakes, and get your body to start healing itself.

Try improving your sleep, test your vitamins and minerals and supplement to optimum levels. Use natural cleaning and personal products, Use saunas when possible to sweat out toxins. Eat clean. Follow an exclusion diet to find out what is causing your leaky gut. You must have a leaky gut if you have an autoimmune disease.

I used a functional practitioner, and the book The Autoimmune Solution, by Dr Amy Myers.

I wish I’d had known this earlier it might have saved me 2 lost years, and 5 operations.

[Cookyboy1 in reply to loisbrucie]

I'm not sure how it started but I do know soon after having a thorn from a branch that I was cutting to make a walking stick stuck in my left hand it sort of seemed to start from that, my hand became swollen within 2 hrs and a few days after I started getting a rash and feeling unwell, then the rest of my problems began.?

[JGK99]

I am also ANCA positive and have had three infusions of Rituximab with no side effects and my bloods are all doing well now so good luck think it will help you as it did me ....!

[Cookyboy1]

Thankyou jgk 99 I hope so, you read so much long term side affects about prednisone but know I need it at the moment to keep me good, will be glad to be off them or at least to have them dropped down to a more exeptable dose, 👍

[lemon74]

I was diagnosed with GPA ANCA+ vasculitis in 2018 and now in remission. I started on 60mg of steroids (hated being on them) and had 4 or 5 rituximab infusions. I am now off steroids altogether, minimum meds and lead a healthy life in remission. No symptoms from rituximab. Hope this helps and wishing you all the best on your treatment 😊

[Cookyboy1 in reply to lemon74]

Thankyou so much, so glad it's working well with you only hoping for similar results for myself, 🤞👍

[Ashrafeldeeb]

Actually no more side effects...

[Cookyboy1]

👍😊

[Roxanne728]

I also have GPA p ANCA vasculitis that attacked lungs, kidneys and blood vessels to feet, legs and hands. I had 4 rituximab treatments over 4 weeks while in the hospital, and one 6 months after release. I am due for my next in a few weeks. They have tapered my prednisone down to 5 mg which is great, as that drug makes me nuts. They failed to warn me however of the side effects of coming off prednisone, so I recommend you inquire specifically. While the rituximab has done its job, I still show inflammation markers and have started on azathioprine. So far rituximab has been the easiest treatment for me to tolerate with no side effects. Wish you all the best.

[Cookyboy1 in reply to Roxanne728]

Thankyou Roxanne, from what you have said and other, s on this site and what I have read, prednisone will probably cause me probs to, so yes will be glad when I can start that reduction on them, hopefully will get the phone call I've been waiting for today, thx.

[Cookyboy1 in reply to Cookyboy1]

Had the phone call today and my consultant has said best not for me to go in the trial of rituximab and bilimumab combined as this means I would be going to the hospital more often as the coronavirus is getting a hold over here in the U/K, so starting on Rituximab on the 17th, so glad that I will be getting the right meds at last and coming off or at least reducing the prednisone although was in a way looking forward to the trial for the purpose of the research side of it, so things are happening at last,

[Cookyboy1]

Hi there, they say my immune system is low at the moment as on 40mg of prednisone, is my immune system going to be going to be any worse when I start the rituximab on Tuesday?

[Cookyboy1]

Hi everyone, hope your all as well as you can be, just had a delivery of some more meds that addenbrooke's issued me, 500mg of Betamethasone and 100mg of Doxycycline and on both boxes it says take as directed by your hospital, problem is they haven't directed me, so I will have to phone an already stretched hospital to get that info unless anyone else can help?