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Temporal Arteritis (GCA)

Posted , 6 users are following.

jaydee456
jaydee456

Hello.

My husband was diagnosed with probable giant cell arteritis in November He has had several spells of facial pain and ultra sensitive scalp (not even able to touch hair without pain). One time also severe pain in the ear as well. This was put down to ear infection ???. However when he had what we thought was a virus as he had high temperature shivers shakes but no other symptoms in November we finally had to go to doc as pain was so bad he did not shave or want to brush his hair. Saw a trainee GP thinking it was neuralgia but she was concerned and ordered a blood test.

Had next day call from her to come in urgent.

Bingo ESR 68 & CRP 139. contacted the rheumatology next day then called to say get to surgery for scrip for steroids (40mg to reduce every month) and apt with hospital on Friday. (Biopsy ordered but cancelled twice) but 2 wks later tests well down after 7 weeks tests back to normal levels. We are so grateful that she picked up on this as we are sure that was the cause of the severe ear pain last January. If this is correct he is soooo lucky his eyes were not affected.

Oh his weight is up 6kg since end of November. :cry:

Thanks for reading.

Have any of you had similar symptoms early on. When ear infection diagnosis was made they were stumped by the scalp thing. But specialist said it could well have been caused by GCA

1 like, 54 replies

54 Replies

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  • janet262
    janet262 jaydee456

    Posted

    Interesting what you said about going off Methetrexate. I am stopping for a couple of weeks and was wondering what would happen if the esr goes all wonky again. Did you ever get rashes on your legs? or pain in your joints? etc., etc., etc., etc., . Hope you and Mary have a good holiday. How is Hubby??
  • Callyollie
    Callyollie jaydee456

    Posted

    My husband aged 73 diagnosed with temporal arteritis 22/12/13 still on steroids but not referred to hospital or a specialist. I have now requested referral letter for private consultation with a specialist as impossible to get early nhs appointment with one.  We have flight booked for four hour flight to fuerterventura end of March for two weeks but wonder whether we should now cancel as not know if it is safe to fly with this illness.  Ant replies would be most appreciated. thank you in anticipation.
    • jaydee456
      jaydee456 Callyollie

      Posted

      Hi Callyollie.

      We travelled to Jersey with Robin on his steroids. Did not even think about that wink   That was his second bout of GCA.

      Your doctor will tell you if it is ok. If you don't need an appointment just drop a note in to the surgery to ask them to find out for you..

      Jean x

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Callyollie

      Posted

      Cally, I notice on another thread you mentioned that your hubby was diagnosed with temporal arteritis in "22/12/14" whilst your above post states "22/12/13".  If the former is correct, then, having had GCA myself I would not have considered flying in those early days after diagnosis.  It would be useful for our reply if we knew what steroid dose he is taking at present and his present symptoms, if any.  It can sometimes take months for the inflammation to be totally under control.  However that is just my personal opinion and your consultant might have a different view. 

      If you do decide to go away, then just ensure the insurance covers all eventualities, and your hubby takes extra supplies of Prednisolone in case of need, in hand luggage as well as hold luggage, and a copy of his prescription.

  • doreen25667
    doreen25667 jaydee456

    Posted

    Hi, jaydee456

    I am still on 7mg steroids per day, although last blood test (December) confirmed levels were normal. Dr says to reduce 1mg per month unless I feel worse, but I am hesitating as the pain was so bad to begin with. At 76 and living alone, I feel vulnarable and almost ignored by medics.Dr says he does not need to see me unless pain gets bad! Is this normal?

    • jaydee456
      jaydee456 doreen25667

      Posted

      Hi Doreen.

      Robin has been reducing by 1 img a month from 10 after the faster reducing form 40 to start with,  just getting to the end now and due another blood test which have been fine so far. As it returned after 18 months last time he finished the course we are going to ask  for regular tests this time. His consultant then did not think it would come back. IT DID and results were as bad as the first time. Fortunately we picked up on the symptoms fast and he was back on steroids faster than the first time. Who knows how long it was brewing before the symptoms strted again.

      Jean xx

      Good luck though. Hope you are lucky and it stays OK

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