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I was diagnosed with GPA 8 weeks ago

Posted , 3 users are following.

tara00929
tara00929

It all started New Year's Eve 2014 I got ill after what thought was just burning the candle at both ends during the festive season. Went GP given antibiotics two weeks later still the same felt terrible could not stop sneezing back GP headache my head actually felt like it was exploding I was in tears the pressure on my head was like nothing I had ever felt before. GP gave my Tramadol more Antibiotics sent me home and said stay off work. I did next day even worse felt like I had tooth ache in every tooth in my head nose bleeds constant fizzing noise as if my skin was crawling night sweats. I went back to Dr this time they called ENT and got me a referral 48 hours later. Allergic Rhinitis given Nasnex told to come back 2 weeks later this was Febuary. Endless nasal rinses and spays and cameras and scan of my snuis I was discharged I did not feel 100% but I had told them that felt my symptoms had slightly improved my scan was clear. Consoltant sad to go back to GP if I got worse. Didn't know if I was coming or going! I was sent on my way. I was so irritable I have to young boys and I was missing out on them. I would come in from work and literally say "oh I am so shattered I need to go to bed " this  was 6 in the evening! I woke up one morning in April and my head felt like it was in a vice I was finding it difficult to breath another trip down docs my sinus surely needed to be drained out I could not breath and the thick congealed blood crustastions that were coming from my nose where so painful and just could not bear it. Back to GP told her the ENT had told me to get an urgent referral back to them.My GP just said she could not do it and gave me prescription for Nasonex I told her that I thought it was the Nasonex that was causing the nose bleeds.Nose bleeds can be a side effect of Nasonex I did not want anymore I just wanted it to stop! I was desperate for some help and voiced my concerns that it must be something more than just a virus. I had had 6 treatments of antibiotics still the symptoms kept coming back. I left and went back next morning to see another dr as I was not satisfied that she could not refer me. I got a referral back to ENT it was May saw a specialist how ordered some blood test as she was concerned about how many times I had ear infections and sinus problems by this time I had lost sense of smell and taste lost 5kg in weight suffering hearing loss in both ears everything sounded like it was under water to me I could hear my heart beart and breathing peoples voices where muffled. I could not work because I could not hear the children I had 10 in all off from my School. ANCA tests came back positive I was terrified what did mean? ENT carried out a FESS operation on my sinus the biopsy was taken and they discovered from the biopsy that I have GPA. I am now under the Hammersmith Renal department and they are helping me with a drug management plan I am on 20g of prednisone at the moment and I am going to have scan of my kidney at present it is not in that area. Why did it take so long? I must say I am relieved now I know it's the not knowing that is scary months of not knowing how to get on with life! I know there are all different levels to this horrible disease and I feel blessed to now have some tools to manage this. Still can not hear in left ear but I am getting a hearing aid on the 7th November I will be able to hear the children in school more clearly againsmile keep going back ask for a blood test you know your bodies better than anyone. It might just be a virus best to get checked if it keeps coming back. Good luck GPA 

1 like, 6 replies

6 Replies

  • tara00929
    tara00929

    Posted

    Should say on I had 10 weeks off of work in all before I had the operation on my sinus my sense of taste has come back yippee!
    • philtw
      philtw tara00929

      Posted

      Hey Tara

      I had PAN when I was 21 and was on prednisolone and imuran for over 4 yrs. I am now 52 and last year I recognised the symptoms, lost of appetite, sinus problems, joint pains in hands and feet mainly. I am working in qatar and didn't want to tell them of my previous history so I went to numerous clinics here with all the blood tests you could imagine and I told them that my twin brother had PAN and steered them to this. I was eventually referred to to main hospital and was sent for an ANCA test and was positive so was diagnosed with GPA. I was on 60mgs of prednisolone and an infusion of Rituximab last December. I am currently on 12.5mgs pred and 200mgs of imuran along with calcium, vitamins and fosavance. I expect to be on this for another 2 yrs. 

      Good luck and keep in touch. 

    • tara00929
      tara00929 philtw

      Posted

      Thanks Phil it does seem to go under the radar it's good to hear from others that are managing GPA .
    • philtw
      philtw tara00929

      Posted

      Hey

      It's controlling it first and then maintenance. Hopefully everything will be ok and it subsides. I never dreamt in my life that it would relapse 30yrs later.  I was shocked. 

  • philtw
    philtw tara00929

    Posted

    The only thing I would support is that you know your own body. If you have had this before then you know your symtoms. 

    For me Night sweats, joint pains, malaise, lack of apetite and nodules on my elbows. 

    Also my ESR rate was above normal. 

    You also have to remeber that this is rare Andy doctor here has not seen it before in his years of being a Dr. 

  • Mo_Grant
    Mo_Grant tara00929

    Posted

    Hi Tara - Mo Grant here! I was diagnosed with Wegener's about 5 years ago. You know what medication I had to start with, now I'm off the prednisolone entirely, but no reduction to the other drugs. I take 500grams of mycophenolate mofetil morning and

    I still go to the renal department of St Helier hospital that is in South London, every few months and see a consultant there. Last time I went, about two month's ago, I was told that I was in remission from this terrible disease. But it has left me with awful

    pains in my knees! They are so bad sometimes that I can barely walk, but since I am 88 years of age

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