Disability: I am in the U.S. I was diagnosed... - Vasculitis UK

Vasculitis UK

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Disability

Retire3603
Retire3603

I am in the U.S. I was diagnosed with anca vasculitis mpa in May 2017 I have gone through 6 mos of cyclophosphamide and heavy doses of prednisone. I am currently on 5mg of pref. And azithioprene daily as I am not in remission. I have stage 4 chronic kidney disease extreme fatigue joint pain shortness of breath and a central retinal vein occlusion in my right eye which requires eylea injections every month to control the macular edema. I am 59 yrs old and trying to get my SSDI. I feel as if I will never be able to work again. How long before we start to feel normal again??

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I had 19 pulses of cyclophosphamide at three monthly intervals and was on high dose predisolone started on 60mil a day and got down to around 15. I felt better after treatment but relapsed around 3 monthly. I had two pulses of retuximab and was well for around 15 months. I am now off predisolone and on 20mil Horticortisone and new treatments. I have now been told that I do not have cerebral vascolopaphy, but hymaphlegic migraine, but new tablets seem to be working. Sorry I cannot help further, hope you soon get treatment sorted and feel better.

Hi you are going through a tough time but it will be worth it. I have microscopic polyangititis. I have 6 months of cyclophosphamide and then approx 3 years of Azathaprine. Huigh dies of prednisone now on maintainance dose of 10 mg. I have now been off Azathoprine 1 year I have great days & not so good days. I think if you are used to working hard and being independent it is hard to rely on others. I have finally found a balance but it took a while for me to get there. Hope you don’t mind that I haven’t sugar coated it. I am very grateful for each day and the times I cannot do what I really want to do I accept, rest and look forward to my plans for the rest of the week. I suffered depression because it was like I had lost my previous life of running around without a thought. For me it took times to come to terms with my restrictions, lung function is not good but we are all different. I really wish you well

I was diagnosed with GPA ANCA vasculitis in January 2017. I've not managed to get into remission yet & had big flare up last October. Rituximab has helped but I've now developed breathing problems. I'm thinking I'm going to have to retire, just wondering whether to give work one last go. But I can't if I can't breathe properly. It's sad but I wonder if it will be easier all round not to have to try and work as well. The best days I have are with friends and family, doing something good together. I want more of those!

I have been living with MPA for 7 years now.I am 62 and have had more or less the same symptoms and treatments as you.i live in London but originally I am from LA ,a dual national.

When I was first diagnosed my original doctor at he time said I would be back to normal in 6 months.As time went by this didn't seem very likely and my new doctor ( a leading vasculitis specialist) told me it would be a much more realistic plan to learn to live with the condition as long term and chronic.It was good advice as it has helped me manage both the disease and the the frustrations of having a disease.Most of the time I figure my new "normal" isn'tand probably never will be the same as my old normal.Maybe its 75%.

I decided to take a gap year from my business to get better.Not cured just better.Eventually I decided to trim my business to suit my condition and now I work a couple of days a week on my original business and have developed a number of other activities that I can manage when I feel up to it.I realise I am fortunate in that,being self employed I can manage my own time:not something that is so easy if you have a full time job.

You may want to find a path from working full time to working less and giving yourself time and space to get better.I found a book called "The Encore Career Handbook" very helpful.

It is a guide for people who need or want to move from their primary work into something else for a variety of reasons including illness.It's an American book and easily available on Amazon.

If nothing else I can now refer to my "encore careers" rather than the dreaded R word!!

I hope this helps.

After 11 years of attending doctors witch 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. 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 for 2 months now. I can play tennis and golf but still can’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. Other people have given you good advice and 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 sure that the medication will work for you as it worked for me. Good luck and good health for the future.

Harry

Canygirl61
Canygirl61 in reply to cairneyh1

May I ask you cairneyh1, how did the organ damage present itself? I’m struggling with so many symptoms, without diagnosis, that I feel I’m losing my mind. “Rhinitis, sinusitis, asthma” are in my list too. My last labs showed elevated liver enzymes and BUN/Creatinine. Had ultrasound of abdomin, now waiting for results. Meanwhile my ankles are swelling. So, that’s why I ask about your organ damage.

cairneyh1
cairneyh1 in reply to Canygirl61

Hi Canygirl

I had no real physical symptoms of organ damage apart from getting a pain in my chest on a couple of occasions. Damage was detected when I was admitted to hospital. Enzyme in blood tests indicated heart damage. A normal reading is 14 mines was 66,000 at one point. I assume blood tests and scan revealed damage to other internal organs although no one was too concerned about then with focus on heart damage. I had cotton wool spots in my vision which was affecting my left eye.

Hope this helps

Harry

I am in the US too.I am sorry for all your problems and disabilities at such a young age. Are you working now? I have a little experience with SSI. If you cannot work and can prove your disabilities with your medical records, and are older than 50, I think you could win ; if you haven't already done so, find an SSI lawyer; don't waste your time with an advocacy group; go directly to an SSI lawyer; you do not have to pay the lawyer; the goal is to get a hearing before an administrative law judge. The lawyer will be awarded costs and fees by the government if you win and you don't pay even if you are not awarded a benefit. It took 4 years for a relative to succeed.

They may turn you down a couple of times; keep appealing. You may have to pay for copies of your medical records if you don't personally have them. Or your lawyer can get them if you have a list of your health care providers and sign releases.

I don't have the degree of problems you have, but I ask the same question when will I feel normal again.?? I was found to be C-ANCA + in Oct. 2016. after sudden and severe upper body pain and what turned out to be a granuloma annulare of a knuckle.of my right hand.

Dramatic response to trial prednisone. Felt great! As soon as I tapered my dose down from 16mg/day to 8mg per instructions (slowly), I temporarily lost vision in my left eye ; eye doctor found nothing wrong with eyes, and concluded a vascular cause.

With that, my rheumatologist started me on methotrexate at 15 mg. every Monday and 12 mg. Prednisone which has helped with musculoskeletal pain , but still extreme fatigue and shortness of breath on exertion. A simple local errand is trying. I understand that Neuro-ophthalmologists are treating temporal and giant cell arteritis with IV infusions or injections of Actimmune (tocilizumab) which was recently approved by FDA for vasculitis in the brain affecting vision and possible hearing problems, although primarily used for RA.

Anyway, best to you; there is hope for remission. Good luck! Don't lose hope.

My comment was directed to Retire3603; forgot to say so, but we are all finding a new normal, Harry is a marvel. I also worked out at the gym vigorously, traveled extensively for 20+ years, practiced law, and now I can't imagine how Harry is doing everything he is doing. Just the fairly recent summer of 2016, I went to France via Lisbon, managed my own luggage, rented a car, drove into the Rhone-Alpine region, met up with French friends , went to parties with them, got myself home by myself; 1.5 months later, Bingo. And here I am resting, resting and resting some more.

Hope I can do it again; frustrated and impatient.

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