Living with GPA

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi, wondered if anyone could help me, I am 29 years old and got diagnosed with GPA In Feb 2017, this has already attacked my sinuses and just found out the heart which is now heart failure, I am undergoing tests as it’s attackinv the kidneys. Wondered if anyone had any advice they can give me, I applied for PIP On 4th April 2017 and have had it rejected and gone for tribunial, which they have now adjourned twice as they did not have all my medical records for all my consultants, however it took me 3 years to get diagnosed eventually by dr David Jayne at addenbrooks now he is a specialist and after all that time I wondered how a nurse at my assessment can determined that I’m not entitled to pip, bearing in mind that it took a specialist team to diagnosed me and all the other doctors during the 3 years had only heard of my condition through a case study! Was wondering if anyone else had this problem or being assessed by unqualified nurse that does not know anything about my condition, would appreciate anyone’s views on if they had experienced the same and if I should continue with my PIP appeal, I cannot work as still under treatment every 2 weeks and my employees won’t take me back untill I’m in remission which I have never got to as yet? Thanks x

1 like, 13 replies

Report

13 Replies

  • Posted

    I was 46 yrs when I got diagnosed last summer and learning to live it as it took me a year to come back to my almost normal mode...What is pip by the way?
    Report
    • Posted

      Thanks for your reply, Sorry it’s personal independent payment, it’s a disability benefit, are you now in remission or you still undergoing treatment, 
      Report
    • Posted

      I am now in remission and still under treatment; my kidneys and lungs failed and was revived back to almost normal health; I still experience fatigue and fight my way out each and every day by staying motivated and cheerful ..Good luck Tia try to stay happy as much as possible
      Report
    • Posted

      Lots of things...learnt to walk on my own by avoiding wheel chair, then climb stairs, began to cook for myself slowly  (took my own sweet time to prepare for the stuff before I start to cook!!) now I can skillfully cook and reasonably fast.  At present I am working although part-time I have learnt to step out and be on the move.

      Then my son was a constant support and encourager..he motivated not to ideal and sit at home ....pushed n nagged me to learn driving and I did pass my driving test in the first attempt !! believe me, now I can drive .... just do not let your mind swallow your thoughts and keep abreast by not going into depression; self motivation is very important as I am a single parent !!!

      Report
    • Posted

      Interesting what you said:   I went from a wheel chair to walking with a cane when I go out now,,,,but I seem to be on a plateau, cannot get better, I believe you are much younger than me, I am 81, and not getting better, slowly getting a little worst tho….Thank you for telling me this it is encouraging.

      Marie

      Report
    • Posted

      I am 47 years and definitely younger than you, but just think as mere numbers and try to feel young at heart, Happy to note that my words are encouraging, I know you are fighter as equal as me.....Lets us keep up the spirit always and motivate each other in this forum.Have a great day !!!!!!!
      Report
  • Posted

    Tia,

    I am in so-called Remission, too....my WG and vasculitis started Jan 2014 and by 2016 in Remission, but still have fatigue as my enemy, this auto immune disease attacked my kidneys and recently my upper chest and now my heart.  

    I am 81 years old and living with it day by day.  4 and half years later.  Had to give up my home and enter a Supportive living faculty.  Where my housekeeping and laundry is done for me in a Studio apartment, as the fatigue prevents me from doing it on my own. I now eat in a dining room and do not cook on my own anymore.

    The best suggestion I got for you is to go to Mayo Clinic and let them look you over, I went for 8 days and saw 18 doctors and found out a lot of information.

    I did not know what PIP is, either.  There is no cure for Wegener's with G.../vasculitis....you need to look elsewhere for help....maybe you can go on Medicaid.  But do try to go to Mayo clinic in Rochester, Minnesota.

    I believe the younger you are the better you recover.....Good Luck,

    Marie

     

    Report
    • Posted

      Hi, thank you for your reply, I am in England so don’t know if any Mayo clinics, I have my mum and family come and support me every day as I have 2 young children that I cannot be sure that I can care from day to day as I have good and bad days, my fatigue is a huge part of my life and frustrating as I’m ok ish but then will just drop to sleep at any point of the day even when I have company, this is what frustrates me as have always worked hard and always had a good career but yet now I feel everything has been taken away from me and have been told I am not fit for work but still unable to even be a proper mum and that’s the hardest thing not being able to bath or have fun etc with my babies, I don’t know about others but feel like a failure and have no say in what happens next and everything is out of my control, the disease just seems to be attacking one thing after the other, had now several operations that was booked to reconstruct my nose As it attacked the nose and fAce and right side of my face has dropped and is disformed but they have cancelled the operation as not in remission and the operation will be unsuccessful and not work due to the disease will attack the sinuses straight away, I just don’t know what to do next to get my life back and try and get on top of the disease without this stress and feelings xx
      Report
  • Posted

    Oh Tia, did not realize you were in England, I believe you have free health care there, right.  Don't lose hope, you are young, the chances of you coming out of this are better than me at age 81. Ask your doctor if he knows of a place like the Mayo Clinic in America.  Take all the help you can get from your parents, the doctors, the hospital.

    Good Luck, 

    Marie

    Report
  • Posted

    Wegeners is an unpredictable disease and to date mine is mild compared to many others, mostly throat, lungs and ears, but when fatigue strikes it’s hard.

    Nobody understands the disease, nobody understands the emotional impact. I would suggest a visit to your MP surgery and try and get their support as health issues are within their remit to lobby for you. Good luck and be kind to yourself. 

    Report
  • Posted

    Tia,

    I got to thinking after reading what you are going thru and realizing you are in England.  Go to your Computer, you  can tap into the Website: MAYO CLINIC.COM  Type in Wegener's with Granulomatosis or Vasculitis, it has a wealth of information.  Another website that I learned a lot from is CLEVELAND CLINIC.COM

    After reading everything I could on these two web sites it became easier to talk to my doctor about my disease.

    Today I found out that the disease is attacking my heart.  I was expecting it, after I failed the last heart test.

    Remember to mention in your emails that you are in England as your Medical system is way different than ours in the USA.

    Good Luck,

    Marie

    Report
  • Posted

    Hi Tia

    I too have Wegener's and have had it since 2004 aged 56.  It took me eight and a half years to get a definitive diagnosis which was the first rheumatologist said that it could be.  I saw 12 consultants at 3 different hospitals but cannot get anyone to treat me.  I took steroids for four and a half years and have had several relapses including one which attacked me in my right kidney for which I took oromorph  (morphine) which didn't help very much.

    As far as your PIP is concerned they always refuse the first application.  If you go to tribunal make sure that you take someone with you to back you up.  Do not tell them that you have good days (this will go against you) but you only have bad days and less bad days.  I was refused DLA at first but on appeal I got the lower rate  (at the time £22) but when I swapped to PIP I had a great man who took notice of everything I said and I got the lower rate of care which is now £56.  You should exaggerate your symptoms and definitely have problems when you see them - I get pain in my hands which I kept rubbing to get the blood flowing again.

    You say that you go to Addenbrookes  which is fairly near to me (about an hour away) and would love to keep in touch with you.  My facebook name is Jan Calcutt.  Do get in touch if I can help.

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up