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Struggling with GCA!!

Posted , 6 users are following.

meganaw1991
meganaw1991

I wrote on here a few weeks ago just after being diagnosed with temporal arteritis.. i was on 30mg pred for 3 weeks, which has been put up to 40 as my bloods arent responding as well as they should.. levels still too high!

Although my ta symptoms have slightly reduced i still get throbbing in my temples but not as bad.. my latest problem is 24/7 headaches. I wake up with a headache and go to sleep with the same.. i have no relief and its agony the pain moves around my whole head behind my eyes down my neck etc. Is this ta or possible side effect from pred? Also i keep getting a 'dead arm and leg' is this related?

Im only 22 and seriously doubting how much longer i can cope.. every day is a battle and i feel like im losing sad

 

1 like, 9 replies

9 Replies

  • marilyn46889
    marilyn46889 meganaw1991

    Posted

    Hi Meg,  you are terribly young to have GCA.

    I think all your symptoms are from GCA.

    Are you seeing a specialist?? 

    I think you should have a infusion of prednisone and the other drug that is a antagonist. Can't think of the name. That gives the disease a real "boost"

    You can have a huge dose that way and then gradually reduce.  I'm so sorry for all your pain.

    Please see a rheumatologist.

    This might help. 

    • meganaw1991
      meganaw1991 marilyn46889

      Posted

      Hi Marilyn. It is due to being on antibiotics from the age of 14 that they think I have developed gca. I am back at the GP today for a followup of blood results so will push for a referral to a specialist. 

      Many thanks! 

  • Mary_J
    Mary_J meganaw1991

    Posted

    Hiya Meganaw 1991.

    I was diagnosed with GCA last year and was put on 60mg of Prednisone straight away. Also Aledronic acid, lomeprazole and soluble aspirin. I do feel that your dose is too low, though I am not a professional but have experience with this condition. My symptoms were eased within 2 days on the 60mg.  Please ask your Dr to refer you to a rheumatologist,  I was, immediately, as I was admitted to hospital when I was diagnosed.  I am 65 and you are so young. Go back to your Dr asap.  It is so important that you are put on the correct steroid dose to preserve your sight!!! Please let us know how you get on. Love Mary xx

    • meganaw1991
      meganaw1991 Mary_J

      Posted

      Hi Mary. 

      I was on 30mg for about 3 weeks but my inflammation markers kept going up so last week I got put up to 40. I'm not convinced it is doing anything as my headaches seem to be getting worse daily.. My GP has been fantastic so far I have been seeing her weekly and she has been keeping on top of things, that said I'm doubtful that I would get admitted to hospital as where I live the hospital isn't very good and they seem to just send you home even if you go to a&e. 

      Will update later. Thank you for the information xx

    • EileenH
      EileenH meganaw1991

      Posted

      What about Hull if you are in north Lincolshire? I think you need a university hospital rather than a local one. 
    • meganaw1991
      meganaw1991 EileenH

      Posted

      I will suggest Hull at my appointment today.. that is where my hospital sends everyone so fingers crossed it won't be too difficult! Thank you 
  • EileenH
    EileenH meganaw1991

    Posted

    I would have thought that as it is due to the long term antibiotic treatment you might have needed a higher pred dose to deal with the inflammation. 40mg is the bottom end of the dose for dealing with GCA. That said - headache is a side effect of pred so it is a bit difficult to tell which is which when you are given pred for an illness that causes headache!

    You do need to be under the care of a specialist and if you are not yet with one your GP should write a letter for you, call the hospital and tell them he is sending you as an emergency GCA patient who must be seen immediately. Urgent referral is NOT enough - that takes weeks, sometimes months. Urgent just means to be seen sooner than the 18 week or so period that is currently the so-called limit. 

    If you are already under a specialist, call their secretary and ask for advice. You need someone who knows more than a GP at the moment.

    Good luck - and keep fighting.

    • meganaw1991
      meganaw1991 EileenH

      Posted

      Hi Eileen.

      I am seeing my GP again today so I will push for a referral.. yes I think that is the problem I have become immune to penicillin due to the amount of time I have been on it so my body is quite resistant to medication now.. 

      I will go up to the hospital if nothing happens today, as I think they have decided on GCA straight away without exploring any options and I personally feel something else is going on inside my head!

      Thanks again xx

  • Lee-Colorado
    Lee-Colorado meganaw1991

    Posted

    I was placed on an intervenious drug called dioxocycline (?) for 5 days and then took it in tablet form for another week while the DRs poked and prodded. They were looking for things like denqe, malaria, HIV and etc. I was finally placed on 60mg of pred and I stayed on that dose until my White Blood Count went from 25000 to below 3000 and my SED/ESR was < 11="" and="" crp="" was="">< 5. 

    my ruhmatoligist said that the only marker that counts is the crp so immediately ask your dr. what your crp count is! when i relapsed in may i was placed back at 60mg. i am male and 70 yrs old and you can search my screen name for entries. eileen is the queen here imho.

    do your jaws hurt and does it feel like knives being dragged over your scalp when you comb your hair? go to top of the page and search for gca under professional references. the dose of pred is calculated by your weight.

    ty eileen. 5. ="" my="" ruhmatoligist="" said="" that="" the="" only="" marker="" that="" counts="" is="" the="" crp="" so="" immediately="" ask="" your="" dr.="" what="" your="" crp="" count="" is!="" when="" i="" relapsed="" in="" may="" i="" was="" placed="" back="" at="" 60mg.="" i="" am="" male="" and="" 70="" yrs="" old="" and="" you="" can="" search="" my="" screen="" name="" for="" entries.="" eileen="" is="" the="" queen="" here="" imho.="" do="" your="" jaws="" hurt="" and="" does="" it="" feel="" like="" knives="" being="" dragged="" over="" your="" scalp="" when="" you="" comb="" your="" hair?="" go="" to="" top="" of="" the="" page="" and="" search="" for="" gca="" under="" professional="" references.="" the="" dose="" of="" pred="" is="" calculated="" by="" your="" weight.="" ty="">

    my ruhmatoligist said that the only marker that counts is the crp so immediately ask your dr. what your crp count is! when i relapsed in may i was placed back at 60mg. i am male and 70 yrs old and you can search my screen name for entries. eileen is the queen here imho.

    do your jaws hurt and does it feel like knives being dragged over your scalp when you comb your hair? go to top of the page and search for gca under professional references. the dose of pred is calculated by your weight.

    ty eileen.>

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