EGPA

[Blimper]

Diagnosed with EGPA two years ago but still looking for the treatment that will relieve some of my symptoms

[vivdunstan Volunteer]

It might be worth you contacting the Vasculitis UK helpline (either by phone or email) to discuss this more. Advice depends very much on your individual case, and circumstances, and they can give you good advice in a confidential and friendly manner. Good luck! For contact details see vasculitis.org.uk/helpline

[Blimper in reply to vivdunstan]

Thanks

[Katie18]

Hi Blimper I have EGPA too - it takes a while balancing different medication to start to feel better. Initially I was given very high doses of prednisone, six infusions of cyclophosphamide and I’m still on aziathioprine. I had a flare after two years after completely coming off predinisolone slowly. Six years later I now take aziathioprine for nerve pain, I have symbicot inhaler and I’m just trying to come off hydrocortisone which I was given as the steroids stopped my adrenal glands from working properly. But I work part time now and enjoy a normal life. What are you struggling with?

[b3rnad3tt3c in reply to Katie18]

That’s great to hear Katie.

[Blimper in reply to Katie18]

Fatigue is my biggest problem at present .ive been my n prednisolone continuously also azathioprine and use symbicort and other inhalers.lost sense of smell two years ago

[Katie18 in reply to Blimper]

Hi Blimper make sure you reduce your prednisolone really slowly. When I got down to 5mg I’d come down only 1 every 2 months and do a week of alternating 5 and 4 each day. I’d even break them in half. If you’re really tired you could stay at that level until you are ready to come down - it’s really tricky. I always used to power nap and still do midday sometimes if I’m not at work. Your GP may have advice about coping with fatigue. It does take time. I think the first time I reduced prednisolone until I came off it I wasn’t completely ready for it as the second time was a bit easier. Good luck

[Blimper in reply to Katie18]

The only time that I got a few months remission from the fatigue which is more than tiredness more like a zombie brain fog as well as unrelenting fatigue was when I had retuximab infusions.the effect was dramatic and I was full of energy for about t three months before t it's all gone now.From the time of infusion to feeling invigorating took ten weeks

[b3rnad3tt3c in reply to Blimper]

Is it fatigue you main issue?

Have you tried coQ10

It really uplifts

[Blimper in reply to b3rnad3tt3c]

Thanks I will look into it as fatigue is controlling my life at present

[Mal06 in reply to Blimper]

Unfortunately some of the symptoms and side affects of drugs both cause fatigue so very difficult. It’s hard also if drs says well you’re stable bloods not too bad etc they then don’t want to change drugs or give you an extra boost. Each of us need to find what works for us, I mainly juggle - busy day (haha for me anyway!) rest next day or two....can’t do too much and have to pace myself. Find your path, but defo talk to drs about any help they can give best wishes. Mx