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temporal arteritis at 22!

Posted , 20 users are following.

meganaw1991
meganaw1991

I have been suffering from a tender scalp, neck and shoulder pain and sudden onset depression alongside headaches in the temple for 1 week. Also been feeling generally unwell for a couple of months but I just put this down to tiredness. I went to the doctors who said she is 99% it is GCA regardless of my age. This is due to one other cause of GCA being prolonged anitbiotic treatment (I have hydradenitis suppurative and been on antibiotics for 4 out of the last 5 years). 

I am still awaiting test results but having read up on GCA I am panicking about the possible complications. Im on 30mg of dilacort daily as of today.

I was wondering how long it should take for me to feel relief as im still in severe pain. Also if any body else was diagnosed young as all stories I have found have been from 40+. 

I am just looking for some friendly advice from someone who has been through or is going through the same as I do not know anyone with GCA! 

Thanks in advance smile

1 like, 58 replies

58 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey meganaw1991

    Posted

    Megan, I have had GCA (also known as Temporal Arteritis).  I hadn't heard of Hydradenitis so I have done a bit of research and come up with the following which rather seems to support the view of the cause in one so young being long term, continuous antibiotic treatment:

    "Causes of Cranial Arteritis may Include Antibiotics

    The exact cause of the condition is largely unknown but there are some risk factors that seem to indicate its onset. The risk factors include age (it is commonly diagnosed in the older population who are more susceptible to inflammation responses), and high doses of antibiotics, anti-inflammatory drugs, and diuretics. Therefore, a medication overdose causing temporal arteritis is feasible. It is, however, important to point out the gray area regarding the cause of the disease: whether the condition is caused by the medication or the condition requires the medication."

    I have heard of one young lad in his early teens being diagnosed with Temporal Arteritis, and others have been mentioned though unusual it is certainly not unheard of.

    If Dilacourt is a steroid, then hopefully you have been started on the correct treatment and dose to help you and protect you from the risk to your eyesight.  If you are in the UK, the treatment would be the steroid, Prednisolone, at a starting dose of 40-60mgs a day.  This treatment can often improve our head/temple pain as if by magic in as little as hours - certainly that was my experience.  If not in hours, then you should start to feel at least a 70% improvement in your pain in a few days.

    Do try not to panic as it sounds as though your medics are on the ball, and stress won't help you to feel better.  Keep in touch and if you have any questions just ask away and we will try and help you from our experience.

    MrsO 

    • meganaw1991
      meganaw1991 MrsO-UK_Surrey

      Posted

      Hello, thankyou for your reply. I am on 30mg of this steroid however it is not the one people keep mentioning. I will mention this one to my gp at my follow up and results on monday.

      Hidradenitis is a skin condition which is usually treatable however I was incorrectly diagnosed for over 2 years so was past the point of a cure. Hense such long term antibiotics.

      I will keep in touch, thank you!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey meganaw1991

      Posted

      Megan, I'm so sorry to hear that your long term Hidradenitis is due to an incorrect diagnosis over a very long period.  If you do have Giant Cell Arteritis/Temporal Arteritis at such a young age, then it may be that the long-term antibiotics have caused inflammation in the blood vessels in the temporal arteries.  I do hope you will get a definitive diagnosis on Monday so that the correct treatment can be initiated - meanwhile, perhaps it will help if you try to include plenty of known anti-inflammatory foods in your diet, such as oily fish (salmon, sardines, mackerel, trout), beetroot, avocado, garlic and turmeric, and try to avoid known pro-inflammatory foods such as all processed meats and sugar.
    • meganaw1991
      meganaw1991 MrsO-UK_Surrey

      Posted

      Oh.. Thank you for the information I hadnt thought of that. I will try that out. Will update on monday.

      Thanks

      Megan

  • ptolemy
    ptolemy meganaw1991

    Posted

    Dilacort is another name for prednisolone. I thought that prednisolone actually appeared in brackets on the packet, but I may be wrong. HS is a horrible thing to have I do feel for you. 
    • meganaw1991
      meganaw1991 ptolemy

      Posted

      It probably does say it on the packet its just me not paying attention as per usual! 

      I have had it since I was 14.. its definitely not the easiest thing to live with. 

      Thankyou, Megan

  • marilyn46889
    marilyn46889 meganaw1991

    Posted

    You should feel better after a few days on press. 

    It sounds  like GCA to me. 

    You should see an eye specialist.  

    My husband has it quite badly.  It's ruined his aorta. They can't do anything about it.  

    • meganaw1991
      meganaw1991 marilyn46889

      Posted

      Sorry to hear about your husband. I am hoping that the tablets will work as they caught it straight away but I have a whole life to live with it so you never know. I will book in with eye specialist next week. Thanks for advice 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey meganaw1991

      Posted

      Megan, if your GP confirms his diagnosis on Monday, then he should refer you immediately to a rheumatologist (there is a fast-tracking referral system being put in place across the country when GCA is suspected).  I echo Marilyn's advice to see an ophthalmologist - he can check the back of your eyes for any sign of blockage.

      Please don't worry following any of our advice - we have just learnt what to watch out for following our experiences over the years and are hopefully able to alert people before any problems arise.  

  • Lee-Colorado
    Lee-Colorado meganaw1991

    Posted

    Go to the top of the page and select "Professional Referance" , select "G" and look down the page door "Giant Cell Arteritias". I would also recommend that you google "GCA Mayo Clinic". The blood test markers are CRP and SED/ESR. These are not normally checked during normal blood tests in the USA so the Dr. Will have to order them spacifically.
    • marilyn46889
      marilyn46889 Lee-Colorado

      Posted

      I agree!  Surely if the Dr suspects GCA he will do a CRP and ESR test.  You would think.  My Husband has GCA and the tests were normal for quite a while. 

      Good Luck!  It's an awful thing. 

    • meganaw1991
      meganaw1991 marilyn46889

      Posted

      I have had my bloods done. I get my results on Monday but have been put on the steroids as a precaution. 

      Fingers crossed its not!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey meganaw1991

      Posted

      Everyone, just bear in mind that it is still possible to have GCA even if the blood tests are normal.
    • marilyn46889
      marilyn46889 MrsO-UK_Surrey

      Posted

      Absolutely right. Even if they take a sample of artery from your temple and it's negative it doesn't mean you haven't got it. 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey marilyn46889

      Posted

      Quite, Marilyn, I know someone who had 3 temporal artery biopsies, all negative, so the diagnosis of Temporal Arteritis was made on her symptoms alone, she was started on 40mgs of Pred.....and is now hopefully heading for remission!smile  I was also diagnosed on my symptoms alone and have never felt so relieved to get rid of the awful pain and sickness......and I have been in rermission for two years.smile I do hope your hubby is heading in the right direction too - all the best to him.
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