JUST DIAGNOSED WITH GCA

Posted , 3 users are following.

I have just been diagnosed with GCA and PMR after one year of agony. My GP told me to start with that I wasn't 25 anymore and what did I expect at my age! I have spent money on acupuncture and physio as I didn't know where to go next. I am a 56 year old woman who has always been active, until now. However I guess I am so glad that at last I have found out what it is. I just want to say that my heart goes out to all you other fellow sufferers and that what a lovely support group you seem to have going here. I will certainly be reading what others have to say and hope I get some good advice too. My best wishes to you all.

LABRADOR lOVER.

0 likes, 8 replies

8 Replies

  • Posted

    So glad that your ongoing pain has been diagnosed....you must feel relieved (in one sense ) and anxious about the one and only treatment......Prednisolone !!

    I won't relate my story at this stage (I will probably make you feel worse ) All I can say is give your body the time to adjust to the meds (it does take a while )

    Just keep posting when you feel good or bad.

    There does not seem to be much going on lately on this particular thread, so it would be nice to have a Fellow Sufferers News.

    Keep \"trucking\" Lab lover.

  • Posted

    Thanks for your reply Milly. At the moment I feel pretty good just to get out of the pain! However I am only on my second week of Prednisolone, started on 30mgs a day and reduced this week to 25mgs a day, got to have another blood test next week. Is this a high dose to start? Seems like you have had a bad time with it, would love to hear your story. I'm new to all of this so it's comforting to know others that can relate to it all.

    Take care for now.

    Lab Lover.[/b]

  • Posted

    Good morning Lab lover.

    I am a little older than you so probably you will \"recover\" more quickly than me.

    The dosage of Prednisolone depends on your blood results.

    Both E.S.R. ..Erythrocyte Sedimentation Rate and C.R.P. are the markers to indicate ongoing inflammation. If the figures are lower than the last blood test, it means that your body is reacting to the steroids and the inflammation is slowly getting under control.

    For example I started on 40 mgs of Prednisolone with an ESR of 140, and the Consultant decided to wean the dosage slowly....2006/2009. I had a relapse last year after just a few weeks off the meds.

    I am still not out of the woods..in fact I seem to be on a Yo Yo diet of the disease.

    Unfortunately my latest bloods show that I must change again from 5mgs each morning to 7.5mgs.......back on the hamster wheel.

    Enough about me ...how are you doing lately. Are you feeling Hungry all the time, do you have the \"shakes\"...................

  • Posted

    Hi Milly,

    Thanks again for the reply and how well you explained it. I do feel hungry alot I must admit, haven't had any shakes but have lots of sweats, horrible! Is this the steroids or the menopause, I don't know. Also have you put on much weight with the meds? It seems you are on a roller coaster with it by what you say. Well hang on in there and let me know how you get on. Thanks for all your help Milly.

    Lab Lover

  • Posted

    Hi Lab Lover

    Am 47, have had GCA for over a year, am coping quite well, so if you want to chat to someone who's story is not all bad, call me on[color=orange:dc57f70811] *******[/color:dc57f70811] .

    Kindest regards fellow sufferer.

    Jonathan[size=9:dc57f70811][/size:dc57f70811]

    [color=orange:dc57f70811]

    (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:dc57f70811]

  • Posted

    Hi Jonathan, Glad to hear you are coping with this awful thing, to be quite

    honest until I was diagnosed I had never heard of it. Just wanted to know have you had a biopsy done for this? My doctor tells me it is crucial that I have this done. Good to hear other peoples experiences.

    Best Wishes Lab Lover.

  • Posted

    Hi Just thought I would let you know I had a Temporal Artery Biopsy last Friday. Not had the results back yet though. It was done in hospital under a local anaesthetic. I was not looking forward to this procedure, but I can honestly say I felt no pain at all. It took about 40 minutes. I have to say though at least the doctors react quickly to this Temporal Arteritis. Hope this helps.
  • Posted

    Well thank you for the posting. I too am not looking forward to this at all

    but it has to be done eh. At least you say you did not feel anything. Did you have many stitches?

    kIND REGARDS

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