Have you visited the Vasculitis UK website. Lots of info on there, not sure what help you want. There's also a Vasculitis FB page if you're interested. Best wishes
oh you poor thing that sounds really horrible. The only good thing out of this situation is that you have been diagnosed the holy grail of the vasculitis world!
No advice really only see as your condition sounds very serious and 'full on 'if you can be referred to to a centre of excellence ( thats if you are in England)
I’m in Wales, I managed to speak to the vasculitis team who told me about this being to post here and ask questions. They said any referrals need to come from my consultant. I’ve got my first set of bloods while on the mycophenolate. Hoping the results show it’s going to the right way which would then give me confidence that the treatment is correct. In the meantime I’m getting a private opinion from a doctor that works in my hospital as a consultant who states he specialises in vasculitis. I questioned my consultant as to why he isn’t looking after me and she said that she is talking to other consultants about my case. So fingers crossed it’s the right medication. How do I get a referral to the school of excellence if I wanted/needed it at any point?
I think ,if I am not mistaken, that if you are in wales you would not be able to go to the vasculitis clinics in England but you may want to double check that is correct with Vasculitis UK.
The very good news for you is the fact you have presented to the medical team in Wales with such severe symptoms ( even though dreadful for you) it is forcing them to work together and collaborate on your care.
They cannot fob you off and send you home but have to deal with you.
If you have been on previous occasions
to the Doctors which I assume you have as I can't imagine you would not have gone to the GP with all those symptoms they are probably in a bit of a panic they did not check for vasculitis sooner! So they will be all 'heads together' to help you.
You may find phoning the help line useful as they will be able to offer support and give you correct up to date information regarding your treatment etc.
This site is excellent for information and support as well.
I thought my journey might give some positive thoughts about your unfortunate circumstances.
After 11 years of attending doctors with increasing symptoms of allergies, rhinitis, sinusitis, asthma, loss of smell,taste and hearing I was in so much pain in my arms and legs that I presented myself at QEUH A&E dept in June 2017. After several days I was diagnosed with EGPA at the age of 55. Many of my organs had been damaged including liver, spleen, left eye, nerves and muscles in my legs and right arm and hand. Above all, my heart was damaged and I had to have a defibrillator fitted to my heart. The day after it was fitted I was allowed out of hospital - 5 weeks after going in. I have been a very fit man all of my life and played tennis 3-4 times and golf1-2 times per week as well as going to gym. I found that I was very tired. I was off work for 6 months recuperating but this allowed me to walk and go to the gym regularly and rest appropriately. I had an 8 week phased return to work and have been working full time as a science teacher since February 2018. I can play tennis and golf but at first I couldn’t hold the racquet or clubs properly with my right hand. I get tired more than I used to and don’t push myself to do as much cardio exercise as as I did previously. Only now do I feel that I will get back to somewhere near my previous fitness levels despite being very positive throughout. I would urge you not to get down about your illness. Like me you now know why you have not been feeling well for a long time. I am still on 5 mg of pred as well as 125mg of azothioprine as well as drugs for heart stomach and asthma. I am sure that the medication will work for you eventually as it worked for me. Good luck and good health for the future.
Thank you so much for getting back to me and sharing your story. I think it’s just understanding if I’m doing the right thing. I’ve stayed pretty positive throughout in the sense I’ve been diagnosed quickly. Put on a treatment plan which next week the bloods will show whether it’s working or we need to change it.
Also understanding that each case is different, it’s just sometimes you need reassurance that your consultant is doing the right thing as you don’t want things to get worse.
It is difficult as I was fit and at 36 your like why? But I’m looking at the other side. It’s been diagnosed I’m on the plan it’s going to take time just need to take each day and improve little by little.
Back in hospital which hopefully is a urulogy issue and they can revolve but bleeding from down there and passing clots it’s ideal. Just got to trust the process.
Again really to appreciate your story and advice. It’ll keep me going knowing there is light at the end of the tunnel.
Hey I have just read your message and it gives me so much hope so thank you so much. I was diagnoised at the end of last year fromGPA ANCA pos. I have been struggling for a year before that and i am still really unwell now. It just seems to be one thing after the other. I have Ulcerative Colitis too and i feel as if i have aged 30 years. I do not look anything like my old self and am on about 20 tablets a day. There are many days where i just can not keep doing this and feel very lobely as no one understands what it is like to go through this every day (torture).
Reading your message has given me hope and reminded me that i have to be patient. kindest regards xx
Where in Wales which Hospital do you attend Clinic I was diagnosed with GPA
In 2013 I am looked after by Nephrology Team In Cardiff as I have kidney involvement along with sinus problems which my consultants
Refer me to Ent consultant and also been referred to cardlorgy consultant a few times over last seven years for check up on Heart and I've seen dermatology had lung function tests all referred by Nephrology consultants all to make sure
Thanks for coming back to me, I was hospitalised at Gwent and I’m being seen by a rheumatologist at the Gwent hospital. I’ve also had prostate involvement so I’m being seen by the urulogy team here.
When you say clinic what do you mean as I live in Cwmbran. I’m taking mycophenolate at the moment which is tablet form and daily so I don’t go to a clinic I only started it and I’m going to have my first bloods to see if it’s working.
I see my kidney consultant in the urology department in Gwent when I was diagnosed I also was put on mycophenolate but after a month was told is wasn't working so had chemo treatment over 6month which did not put me in remission was put on Rituamub over 2 year treatment everything then settled down for 5 years but my blood test showed raised Anca so back on the Rituamab again
When I said clinic I ment which dept in Gwent looks after you
I also live in Cwmbran
Hopefully the mycohenolate will work for you and think start to settle down
Rheumatology department are looking after the vasculitis itself. But all my prostate issues are being looked after the urology department.
Who decided to put you on the rituximab was it your kidney consultant? Was a rheumatologist ever looking after your case.
I’m hoping it works becuase at the moment more and more things keep happening and I need the inflammation to stop so I don’t keep coming back to hospital.
I’m actually back in now with another issue down there so 4th time in 6 weeks. All prostate urethra related. I’m glad you got into remission and hope you do again. This is all new to me and hope to get to that point just hope not too much damage is done before they decide to move me onto the rituximab.
When diagnoses and was seeing him in Abergavenny and Nephrology for treatment but he handed me over to Nephrology after about 3 years said they have very thing I needed I was also seeing urology for my prostate as I have raised PSA levels
But it down to my age having larged prostate that get checked by my GP very 6months
It’s not usual for GPA to affect the prostrate which makes your case extra challenging, especially as you have developed a fistula etc. Also with this degree of organ involvement I would be asking why they are treating you with Mycophenolate and not Rituximab or Cyclophosamide which are the medications usually used to put patients into remission.
A good question to ask is how many patients have you treated with GPA and how many have presented with symptoms like mine? The answer ma be revealing! A urologist will have very little experience of GPA and will be relying on the Rheumatologist. Perhaps they could contact Prof David Jayne at Addenbrookes Vasculitis Clinic for advice, he is always very happy to help out.
They have come across no patients with systems like mine. Interestingly David Jayne has come back and mentioned the same that the rituximab would be the first cause of action. Not that the mycophenolate is bad if it works. I’m actually back in hospital because a clot came out of the Urethera and lots of bleeding. After a scan it showed the fistula has healed. But I have inflammation in the urethera now. I’m just wondering whether not having the rituximab is causing more issues as we resolve one another happens.
GPA is a rare disease, your presentation makes it more so. David Jayne is a world leading expert in Vasculitis, Rituximab is the evidence based treatment to bring about remission in people with organ involvement.
I would follow the expert and the evidence in this case. The problem is that the longer the Vasculitis/ inflammation takes to bring under control the more damage can potentially occur.
Has your Consultant explained why they are treating you with Mycophenolate and not Rituximab? It might be worthwhile asking if they are following the evidence based BSR or EULAR guidelines to treat GPA. The problem with having a rare disease is that we need to be our own best advocates, we can’t automatically assume that the Dr’s treating us have the knowledge to do so.
Thank you. Having spoken to urulogy, it’s clear vasculitis has involvement with my prostate and all the other issues that keep happening.
I’ll now get in touch with my consultant and get onto the rituximab. As it’s clear that while I’m waiting to find out whether mycophenolate will work which takes 6 weeks. I keep coming back in with more prostate issues. 4 admissions in 6 weeks.
How long did it take for the rituximab to take affect?
The thing about Mycophenolate is that it takes 6 weeks or more, at the correct dose, to become effective. Even then it’s not instant remission, symptoms can take a while to settle. Are you still adjusting your dose up?
I think the time for Rituximab to be effective can vary as well, the issue here is more that it’s evidence based and more effective in the long run. It’s a medication that puts people into remission whereas Mycophenolate is used more to maintain remission once it’s reached.
Of course Rituximab is more expensive and needs to be infused, that may be part of the issue here. Have you ever been given a reason why they didn’t give you Rituximab from the start?
Thank you, just spoke to my rheumatologist and she’s agreed to put on rituximab. Waiting for the nurse to get back to me to agree a date to get things moving forward. Thanks for your help on this it’s been really appreciated.
It can be scary having a rare disease especially when it’s complex and there are relatively few Dr’s who really understand it. Rituximab has made such a difference to people with GPA, I hope that you manage to get into remission soon.
Hi Brussels, had my first infusion yesterday. Second one in 2 weeks. I know it can vary on how long it takes to work. For you how quick did it work? At the moment I’m leaking puss from my penis. If that just resolves itself the rest I could live with. As you said early you want remission before permanent organ damage.
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