EGPA

[Ovens61]

Hi, anyone with EGPA who can share their experience of the disease. I was diagnosed 18 months ago and just been told I'm in remission but still on 12mg a week methotrexate and 5mg a day prednisilone. I feel like I'm getting back to my old self with much more energy than I've had in a long time. My main worry is long term future and short term immunity. Would be good to hear of other cases and get advice.

[Katie18]

Hi Oven it’s good to hear you are making good progress with your disease. I too have churg Strauss and was first diagnosed about 6 years ago. I have had one major flare during that time when I was in hospital again which was brought on by a chest infection during the winter. I work part time, have regular blood check ups with GP about 3 monthly now, see 2 rheumatologists- my local one at Airedale Hospital & a more specialist Vasculitis one at Manchester. I also see a respiratory consultant, a mobility team due to peripheral nerve damage which has damaged my feet & I am under endocrinology and take hydrocortisone due to the high levels of steroids I have taken which has resulted in my body being unable to produce its own.

I lead a relatively normal life with quite a few medical appointments still. I go to the gym to keep healthy as exercise is important to me and have reflexology & shiatsu massage as I’m keen on alternative therapies.

I have a flu jab and usually get one or 2 chest infections a year which result in antibiotics and a short course of steroids. I try and keep away from people who I know are poorly. I’m now on aziathioprine but no steroids. I also take a low dose of hydrocortisone & amitryptiline for nerve pain. My biggest problem is the damage the disease did to my feet so I’m always getting new orthotics & shoes, struggling with foot pain & don’t walk as well. I have had to learn to be patient with my disease and pace myself and I often take afternoon naps when I can. Hope that helps

[Tidgypud in reply to Katie18]

Hi Katie . Can you tell me the name of your Vasculitis specialist and which hospital in Manchester it is ? I'm currently going to Chapel Allerton in Leeds and I'm really not happy with my Vasculitis care . I have EGPA and I was diagnosed in 2010 . I am looking to change my care one way or another. Either by changing hospitals or pressuring leeds to put me in the care of the right doctors . I have asked for this politely so far . thankyou Karen

[Katie18 in reply to Tidgypud]

I’m under Dr Bruce’s team at Manchester - a lovely man and very knowledgable and thorough. I have recently started seeing dr Maccarthy in his team as dr Bruce does lots of education - again a great consultant. I asked my GP to refer me. You can always say you want a second opinion best of luck

[Tidgypud in reply to Katie18]

hi Katie . thank you for that . is there only one hospital in Manchester

[Katie18 in reply to Tidgypud]

It’s the Manchester Royal

[Tidgypud in reply to Katie18]

Thank you

[Hidden in reply to Tidgypud]

I think that hospital in L. is not an easy one. Whilst some patients are seemingly very happy, if you looked a little deeper, there are enough patients, who are voicing how unhappy they have been and are not happy how poor the hospital's complaint procedures are when patients tried to get things right. I was quite surprised by it. Diagnostic delay was also mentioned. It's a shame, really. More people complain, their hospital attitude may change, not sure, to be honest. The thing is that the hospital has star consultants and hospital management would treat them like Gods and patients are secondary, not their primary focus. Management just follows what these star consultants tell them to do. I see that I felt that it is part of the problem.

[sealives]

Hi Ovens

I was diagnosed with EGPA April 2016. Like you, I had/have similar questions concerning long term outlook and immunity, and so I have put these questions to various consultants and other EGPA sufferes. The consultants have generally said that once in remission my life should be relatively normal but to expect some existing symptoms such as fatigue to continue. I asked one about the effect on life expectancy and he said it might shave a few years off, but nothing significant. On the immune system question, and bearing in mind my treatment plan is based on Rituxmab, I asked other sufferers their experiences as I wanted to consider foreign holidays to Asia. Of the small number I spoke to, they told me they do travel to foreign countries but are very careful and take all of the usual precautions etc. My own immune system, having had three cycles of Rituxmab appears to be very robust and I have not suffered any colds, flu, chest infections etc. To put all this in some kind of context, I do eat very healthily,exercise regularly and try to avoid stress; I am 59 and no longer work. I was also very lucky in that I was diagnosed quickly and treated before too much damage was done, although I do have chronic renal kidney failure.

Please understand that my experiences and situation are very specific to my my illness, age, health, initial impact of my first attack etc and should not be interpreted as general advice. Only your consultants can really give you the insight you seek, but I am happy to share my limited knowledge and experienes.

One thing I will add though is that my daughter gave me a teeshirt when I was first diagnosed which said something along the lines of ‘Vasculitis, just when you think you have beaten me, I will find a way of fighting back even harder’ and I never let that thought out of my head as there are days when it would be very easy to just say “no, as I don’t feel to good today’’. Those are days when I dig deep.

I hope this helps and please ask if you feel I can be of any assistance.

[Ovens61 in reply to sealives]

Hi Sealives, thank you for taking the time to reply, very much appreciated. Like you I stay positive and refuse to give in, I'm 52, work full time and have a daughter who is 8 yrs old so have good reason to make the best of things. Fatigue is my worst enemy at the moment but that's improving slowly and not stopping me doing much as long as i rest when i need. X

[sealives]

Hi Ovens

Yes, fatigue is by far (in my experience) the most difficult aspect of the disease to manage. It's not knowing, one day to the next, how you are going to feel; makes it very difficult to plan anything in advance. All the consultants I have spoken to regarding fatigue have just looked at me sympathetically with no suggestions on how to 'treat' it. With an 8 year old daughter, I can only imagine how challenging your life must be at times - keep going and as Katie18 stated, pace yourself and don't be afraid to take afternoon naps (when you can). Good luck and as I said before, happy to help if I can.

[Mal06]

Ovens I’ve filling we’d the replies to your questions with interest. I think a lot depends on some of the following:- how ill we were by time diagnosed, how long ago diagnosed, the treatment(s) involved.

For many (I was) have been quite unwell for some time - even years, before diagnosis with symptoms that they might be seeing various specialists for but they don’t link the symptoms and see the bigger picture! Maybe because so many drs weren’t aware of these illnesses and whilst more now do, it’s still rare and defo need to find a good specialist with real experiences. By the time they’ve (me) been diagnosed again many have been in crisis with their bodies perhaps reacting or closing down with organ failure etc. Therefore treatments given may have been quite strong and varied, and long lasting. That said over the years I’ve certainly seen more and more people being diagnosed much earlier and therefore treatments have been given accordingly, the newer meds being used in short bursts and some of the older more damaging drugs used more ‘lightly’ if you see what I mean. For those who were perhaps diagnosed at crisis and perhaps years ago, a lot of our problems are underpinned by the damage to our bodies by two issues -a)the syndrome itself and b)the harshness and/or long term use of these drugs.

For me my body is severely damaged which of course means my immune system will continue to be extremely weak.

Like many who have replied I remain on a steady dose of pred and weekly mtx, in my cocktail, and have peaks and troughs. I do go on holidays - v v planned and my insurance costs a lot due to state my body is in and therefore the risks, I enjoy quality time with my darling grandson and family and friends, and am so pleased I’ve outlived the original diagnosis of 6years and do feel I can go on for many more with v careful management and listening to my body (important!!).

It seems to me for you and many others - you’ve been diagnosed earlier, you’re treatments have been good and your bodies are recovering well - enjoy life - your friends and family, travel, do everything you want to - I think we’ve all learned you never know what’s round the corner. Best wishes all, sorry for rambling!