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I was very recently diagnosed with GCA

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Emis_Moderator
Emis_Moderator

This was posted as a comment on one of the sticky posts so I have posted as a new discussion on behalf of user gersmummy who I will email to let her know.

I was very  recently  diagnosed  with GCA,  this was by an on the  ball gp.  I went with a pounding  headache  and  painful  jaw. She took blood tests and put me on  naproxen.  I take medication  for back pain  and  was asked  to  stop these. When I  got  my bloods back I was told my level was high but not sky high and because  I  am  only 45 ,  it was  50/50 if it was  GCA.  Anyway  she put me on  30mg  of predisinol for 3 days and is phoning today to see how it went. My head and jaw is still painful  but has eased a little but my back is screaming  at  the  lack of  pain killers.  Any advice  would  be  greatly  appreciated 

0 likes, 7 replies

7 Replies

  • Oregonjohn-UK
    Oregonjohn-UK Emis_Moderator

    Posted

    I will leave other who are familar with GCA to answer this one.  I would think that any pain killer except NSAIDS would be OK for the back pain?
  • EileenH
    EileenH Emis_Moderator

    Posted

    Hi gersmummy - I hope you find your way here via the Moderator's email.

    Over where you posted first

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    you will find a first post that gives you links to all sorts of places with info and other forums for PMR/GCA patients.

    In that first post there are 2 links at the end to papers about the diagnosis and management of PMR and GCA from top experts. I suggest you take them to your GP. I would put the links here but this post will disappear until the they have been checked as they are outside this site. 

    I think your GP would have been better trying you with at least 40mg, 30 is a very neither one thing not t-other dose - it is too high to start for PMR, too low for GCA really. She should also really have contacted a specialist, eye specialist or rheumatologist, since you are on the young side for GCA so come into the "atypical" class - but I won't criticise too much as we spend a lot of time trying to talk doctors into considering GCA in patients they think are too young. A man who died suddenly in S Wales last year was found to have had undiagnosed GCA when they did a post mortem - he was 37, so it isn't unreasonable to suspect it in someone in their mid-40s with the right symptoms.

    Obviously your back isn't PMR as part of the GCA if it hasn't responded to the pred. May I ask what it is? You don't have to say but it might give us some idea of things you could try to ease that. Were you on other NSAIDs and has she now stopped the Naproxen? I know it is meant to be easier on the stomach - but these things are merely relative so do be careful and take all your tablets in the middle of a meal if possible to minimise stomach problems. Lots of ladies swear by yoghurt to avoid stomach irritation problems with pred.

    Looking forward to hearing more details and hope we can help you! 

    • gersmummy
      gersmummy EileenH

      Posted

      My back pain is caused by multiple pregnancies and then a car crash which just sort of sealed it. I have been on ibuprofen and cocodamol 30/500 for some time . Tried tramadol but that didn't work for me. They have taken me off ibuprofen and replaced that with naproxen which I have still to take. Gp called on Friday , told her I didn't think the pred was working because it was 4.30 and my head was screaming. Was told the medication didn't work that way and have to go back on Monday. I have no pred to take over the weekend and have been told to stay off my cocodamol to. Feel as though my head is going to explode. My partner wants me to go to the hospital today but can't handle that either. Many thanks for replying so quickly.
    • tina-uk_cwall
      tina-uk_cwall gersmummy

      Posted

      Hello gersmummy, I'm sorry that you are in such pain but I am furious that you have been left in limbo like this for a whole weekend without further prednisone. I am not medically trained nor am I a sufferer of GCA, so I do not want to worry you unnecessarily but your partner is quite right, get yourself to a a&he department as soon as you can. GCA is classed as an emergency medical condition and they will see you without any fuss and quickly.

      Gca is related to PMR and is not life threatening if managed correctly. But it can cause blindness if not treated quickly so I am furious that although your Dr believes you have GCA they have left you without any medication for the weekend. This us not how the condition is treated. You need to be prescribed 40or50 or even 60 mgs of prednisolone, 30 mgs is simply not enough. Most patients stay on whichever dose they are prescribed for at least 6 weeks then it is a very slow reduction and by small dose amounts. They are right in that you now, if taking prednisone must not take ibuprofen. But your Dr is wrong. Prednisone should, if GCA is what you have, work very quickly, say within 6 hours reducing the pain by at least a half and then then the following few days reduce the pain considerably more. Get online and print off the details for GCA, from this patient site and take them along with you to a&e. As I said I don't want yo alarm you but you must receive the correct treatment and very very soon. Then you should be referred to a rheumatologist as you are so young. Please, please let us know how you get on. Regards christina 

    • EileenH
      EileenH gersmummy

      Posted

      What is THAT supposed to mean? Giving a few times 30mg isn't how pred works in GCA either! It is a chronic condition and a medical emergency at the beginning - you take it seriously and she hasn't.

      If she truly thought you had GCA, to leave you without pred over the weekend is appaling. If you get ANY visual symptoms at all, including blurred or double vision, however fleetingly then please go to the hospital however bad you feel because if it is GCA that would indicate your vision being at risk. Christina has explained that already I see.

      By the way, I know it has been a chronic condition but have you ever tried Bowen therapy for your back? I had problems following a whiplash injury that had been treated at the time but I developed chronic back pain. Eventually PMR joined in - but for 5 years I got amazing relief from Bowen therapy. It doesn't cure because it is an ongoing problem I have as well but it does reduce the pain a lot. It also caused headaches because of very tight muscles - Bowen helped that too. It is very gentle and you do know within a few sessions if it will make a difference so it isn't an open-ended "you'll have to come every few weeks for the rest of your life" sort of therapy. One lady I know could hardly get out of bed for weeks, used a zimmer to get to the loo. After the first session she walked to the car - and had to go back to fetch her walking stick! She now goes for a session every 6 months which keeps all at bay.

  • janet08828
    janet08828 Emis_Moderator

    Posted

    I am also a GCA sufferer, I was diagnosed a couple of years ago at age 57- also under the impression that I was "young".

     I agree with Eileens question regarding the "low" start dose of prednisolone,  I was on 50mg the first week and I think some start as high as 60mg.

    I am still slowly getting down to a maintenance dose 2 years later!

    You are having a terrible time with your back pain, but this is not related?

    I do hope that you can soon get some relief for that.

    Sorry I can't be more help.

    You seem to be suffering badly with the pain

  • LisaCACO
    LisaCACO Emis_Moderator

    Posted

    well everyone else is right. naproxen and 30mg? I was just diagnosed this december and I am 53, black and totally not fitting the demographic, but my doc slapped me with 60mg prednisone from the get go, just in case, whipped me into a biopsy/surgery a couple of days later and I was diagnosed as having GCA. So while your Gp was kind of aware of it, she needed to really be on the ball with the steroids. your eyesight is at stake. hope everything works out. 
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