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GIANT CELL ARTERITIS

Posted , 8 users are following.

margaret_edwards
margaret_edwards

i have just been diagonsed with this condition, and am searching the internet for information, a trainee doctor at my surgery picked up what was wrong within mins of my interview with her, steroids have been prescribed and i am confident they will do the job they have to, hopfully the condition has been spotted quickly. i had an extreme headache for a few days, thought it was a migraine, but realized it was more than that when the pain shifted to all my forehead and my eyes were affected, blood tests have been taken etc. i am trying to keep calm, and not panick, i have a heart condition and am diabetic. i am 67 yrs of age. i had no prior warning that anything was wrong. thank goodness for newly training doctors who think about the patient.

0 likes, 9 replies

9 Replies

  • mrs_k
    mrs_k

    Posted

    Margaret

    contact me by email either on this site and leave your email address or email marked for the attn of mrs k at xxxxxxxxxxxxxxx

    I have quite a bit of information on GCA.

    I have had GCA for over two years now and am a member of PMR-GCA UK and new national charity.

    mrs k

  • mrs_k
    mrs_k

    Posted

    Margaret

    Just noticed you are located in Sacriston. I live in Kibblesworth and run a support group for pmr and gca patients. We meet in Gateshead and the next meeting is on 8th June at 2pm.

    We are also in close contact with a Rheumatologsit at Durham University Hospital.

    email on this site or xxxxxxxxxxxxx marked for the attn of mrs K.

    You are most welcome to come along and bring friend, family or carer.

    [color=orange:640f3084c4]

    (Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/color:640f3084c4]

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  • Guest
    Guest

    Posted

    I am 66 and had never been ill or had headaches or been in hospital.

    I began the sweats and headaches in Oct 2004.

    6 weeks in hospital seeing 3 consultants/specialists, 3 tests per day. they could find nothing wrong. I discharged myself on Christmas eve.

    they put me on 24x 5mg steroids per day. I improved immediately.

    in Jan 05 they did biopsy said I'd got GCA.

    every time I drop below 5mg a day it all comes back.

    even on 5mg I ache all over have headaches and mild sweats from back of head.

    I was never warned of the side effects only that I could have gone blind in one eye and my bones would disintegrate.

    side effects have been, heart pumping at only 40%, described as a perfect heart in first 12 months.

    2 cataract operations.

    doctors and specialists have dumped me.

    With hindsight I would prefer to be blind in one eye and have a perfect heart.

    THINK I WILL BE ON STEROIDS THE REST OF MY LIFE AND HEART TABLETS

    I wish you good luck, god bless and merry christmas.

    PS people who jump off bridges in Paris are

    \"IN-SEINE.\"

  • Jersey_Royal
    Jersey_Royal margaret_edwards

    Posted

    Hello, I live in the Channel; Islands and there is no group here to discuss and

    have chats with other patients.

    I would love more information on GCA/PMR  I have been diagnosed since November

    2012.   I am down to 5mgs steroids a day, and have been fine for the past

    3 weeks, but I have suddenly got back pain, its difficult to know if it is linked

    to GCA or general backpain, I am 71 years old, and I am very active, I go to the

    gym 3 times a week which includes Pilates, and a hand weights class, I also walk on the non gym days,  my Dr is excellent, I havn't seen a Reumotologist as my DR

    takes my regular blood tests,  I don't want to cut down too soon on my steroids.

    I find thats the problem   whether all the aches/pains are bone problems, or if I should

    step  up on my steroids,  I don't really get any headaches now,  but did have headaches and blurred vision when diagnosed and was started on 60 mgs steroids,

    It's just good to read other patients experiences, so just to be informed of any updates you have, would be good.   

     

  • jack95331
    jack95331 margaret_edwards

    Posted

    Hello my wife Yvonne has this horrible condition, I myself have chrons

     and we are both near the end of our tether, shes in so much pain in her head and she has lost the sight of her right eye and only 25 % in the left,

    her steroids are down to 20 mg,but I think she should be on more,

    I don't know what to do nor do Drs,she's under Southampton eye hospital, what should I do.

    • lodgerUK_NE
      lodgerUK_NE jack95331

      Posted

      Jack95331

      Yvonne should not be in any pain in her head, but I really need more information, like when it started, how much was she on, how fast has she reduced etc.

      However, I would suggest that you make a double appointment with your GP and discuss the whole matter with him and tell him'her this cannot continue.

      Go to the website of PMR&GCA UK NOrth East Support and read up under Useful Medical Information the diagnosis and treatment of GCA, if necessary download it and take a copy to your GP. 

    • jack95331
      jack95331 lodgerUK_NE

      Posted

      Thanks for getting back,2 months ago Yvonne had a stroke it left her with this gca,had biopsey it came back neg,started her on 200 mg in vien dropped to 100 mg   then 60 mg then 40 mg they want her to be at 15 mg for her Laser treatment in 3 days,she has had 2 injection s in her bad eye,one more to go on the 8 th next month, she takes paracetamol every 4 TO5 hours and interspersed with ibuprofen 3 times, plus her eye drops, the gp doesn't seem to have a grip on this, it was the optician at Tescos that picked it up, not Drs, her BP at the time was 206/100, they said it would never Come down, but I got it down to 140/75 ish.hope this helps. Jack.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey jack95331

      Posted

      Jack, I'm sorry to hear about your wife's stroke.  GCA itself is a sort of stroke in the eye.  It must seem very complicated to be diagnosed with both at the same time.  It's not uncommon for biopsies to be negative with GCA - the large cells they are looking for can just escape the tiny piece of artery removed.

      It really isn't a case of being at 15mg just when we or the medics want us to.  We have to take sufficient dose of Prednisolone to protect our eyesight until the inflammation is completely under control for as long as it takes, and this timescale is diffferent for everyone.  Many people with GCA would be unable to reduce as far as 15mgs in two months.  If she is on the correct dose, then she should not be having the sort of head pain you describe.  My 40mg starting dose completely removed my head pain and  I was told by my rheumy at my first appointment that  if my head pain returned I should contact him immediately.

      How urgent is the Laser treatment?  Could it not be postponed until your wife's GCA symptoms are under control?  Perhaps you could ask for referral to another rheumy for a second opinion if, as you say, her present Drs don't know what to do.  There are some excellent rheumy's around the country, with one being in Southend - a Professor of Rheumatology who is involved in up-to-date research into both PMR and GCA.

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