Will I every feel well again?

[ElaineRH]

Hi I was diagnosed with EGPA sept 2017 after 7 days in the Brompton. I am ANCA neg too - as you say this does puzzle them... I have spent the 1st 18months on 20-50mg pred with little effect on the eosinophils. Tried 6 months Azathioprine and had a major relapse with pulmonary infiltrates. I have had very severe asthma for 20+ years and also have bronchiectasis. I have been told many times that I don't get much benefit on oral steroids for my asthma. Have tried 2 other new biologics (Mepo and Reslizumab) both of which I had a reaction to - one was anaphylaxis) the consultant changed me to intramuscular Triamcinolone which did a good job of getting the Eosinophils down but at the expense of my mental health.

They are trying to avoid the chemo route as I was so ill on Azathioprine and I am now on another biologic (benralizumab) which has lowered my eosinophils to zero for the first time. Everyone seem happy but I don't feel any better. My asthma is as bad a ever, my lung function hasn't recovered from about 40% and I have had a constant upset tummy for the last 2 months (which I had immediately prior to the diagnosis.

Will I ever feel well again? Or will I now "live" with the previous damaged caused my the EGPA. (lungs, brain, GI and neuropathy )

I try my very hardest to keep fit (am am an exercise rehab expert specialising in lungs, heart and neurological conditions and also teach Pilates.

Some comment/ words of comfort would help a lot

Thanks

[AmyS1]

It took me about 2 years to recover. A day at a time. Keeping active is important etc.

[AmyS1]

Is your upset stomach related ? Have you seen a gastroenterologist with an interest in vasculitis. Speak to someone on the helpline.

[ElaineRH in reply to AmyS1]

Hi Amy, thank you - I will call them next week. Re the Gastro problems . Just before I was diagnosed I had the same problem. Things improved with treatment but then a couple of months ago it started again. I still have rashes , bad breathing/ lung function , some cardiac related symptoms and the gastro stuff. My GP wants to send me back to the Brompton where the diagnosis was made ... I am inclined to agree with him. Thanks again

[cairneyh1]

Hi Elaine

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 but,like you, keen to regain my fitness. 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 in 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.

Harry

[danerd1960]

I have Wegner’s & the 1st year after my initial flare I really felt good most days! I was on Imuran, Methotrexate & prednisone. I had tapered to 5 mg of the prednisone them bam! I relapsed in April of 2019. It started in my right hip and the rash spread down my leg. I am still healing from it. It attacked my colon ( I already had diverticulitis for years). I ended up with chronic diarrhea & then a colostomy. I was hoping for a reversal but my rectum & buttcrack were too damaged. I live with it but don’t love it! I get so frustrated because I feel bad & cant finish projects! Prayers for you-just do what you can!!🙌🏻