Long time GPA patient

[abc1]

I am 61 years old male and have had GPA on and off since I was 26. Had lots of treatments, some nicer than others, and have weathered some longer term side effects of GPA. Condition is currently under control and am quite well. I have managed to remain in full time work for nearly all my life despite the GPA.

[citygirl1234]

Hi abc1,

I’m glad to hear that things are going well for you and GPA hasn’t stopped you from working full time :). I was recently diagnosed at 24, and work full time for a financial services company in a job that while stressful and with long hours, I really enjoy. I had to recently decline a significant promotion which would have seen me move abroad as I felt it was too much of a gamble as my GPA is still not fully under control. However, it very reassuring to hear that that is not an unachievable goal for the future, as long as I keep on top of things.

Do you mind me asking what you do for a living, out of interest?

[abc1 in reply to citygirl1234]

I have worked for a chemical company involved in the oil business all my life. I am currently a Senior Technical Advisor. I've travelled all over the place with work and lived in USA for a while when younger. I don't travel much these days if I can avoid it - Its a young person's job.

[Tbrz]

Hi, it’s good to hear things are continuing going well for you. How affected were you by GPA, how far advanced was your GPA before it was diagnosed? I wish I had been so fortunate to return to my job I loved. I also always feel such a failure hearing experiences such as yours. Has it been harder to deal with as you’ve got older? Thank you.

[abc1 in reply to Tbrz]

My GPA started with a bad bout of Flu in the January that left with sinus issues that would not clear. GP referred me to ENT in Feb. ENT appointment came for May. In between, had increasing sinus pain and bleeding; as well as intermittent joint pain in wrists arms, elbows, knees, hips and ankles. ENT admitted me 1 week after seeing them and had biopsy. Biopsy inconclusive then went down hill - joint pain all the time such that could not get out of bed or walk. Could not stand daylight on eyes and went deaf. Second more extensive biopsy eventually came back showing granuloma - diagnosed after 5 weeks with Wegeners, now GPA. In hospital for 8 weeks in all.Treated with steroids and Cyclophosphamide for 2 yrs. In full remission for 12 yrs then got Flu again...back it came. More Cyclo. Switched onto MTX in 1997 been on it since. Have had 1 other Cyclo for a flare, as well as trial of Rituximab.

GPA damaged heart valves but this long term damage was not picked up and eventually had two biological valve when just 52, nine yrs ago now and have pacemaker as a result of surgery. Has it got harder as I 've got older ...I'd say not really. I try not to let the condition rule my life. To an outsider I live a normal life - I'm just careful to try to avoid infections/colds and my health but I'm not obsessive about it.

[Suzywhizzo in reply to abc1]

Hi abc1, thank you for sharing your story, which is really inspirational. You give lots of us hope and I like the fact you say you do not let the illness rule your life.

Have a lovely Christmas!!

Suzy

[hof-man]

👋

Have GPA Ten years but four years ago developed brain symptoms.

Retired from being a GP - chronic mental fatigue and not responding to treatment including rituximab and methotrexate.

Diagnosis now being queried and I have my own theory of TB (occult) being cause - was in Zimbabwe 1988 and unwell since.

Currently being investigated by National Hospital for neurology and neurosurgery in London.

Time will tell!

H

[Wizzi]

Ciao posso chiederti se hai avuto coinvolgimento renale e se hai capito da cosa é stata causata la tua malattia e la riacutizzazione. Sei sempre ststo in terapia? Sono la mamma di un ragazzo di 13 affetto da due anni da MPA con coinvolgimento renale e sto cercando disperatamente informazioni. La tua lunga storia mi rassicura ma credo anche che per ognuno sia diverso e che comunque per te non sia stato semplice . Un abbraccio