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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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  • Mary_J
    Mary_J

    Posted

    Thank you Janet. This forum is great isn't it. It's so good to know that you can ask a question and usually get a solution. I know what you mean about pills and doctors. I've been really fortunate with my health until last Oct when the GCA reared it's ugly head, so now all I seem to be doing is attending the hospital or picking up my meds!! But it could be a lot worse couldn't it, so that's the way I try and look at it. It's good to have a moan to fellow sufferers because as you say we're more I'd less all in the same boat. Well take care Janet and Ill post as soon as I know my results. You take care. X
  • jaydee456
    jaydee456

    Posted

    Hi Janet, glad you got an answer even if it does mean upping the steroids.

    Take care all of you

    Jay x

  • janet262
    janet262

    Posted

    Oh so great to hear from the two of you. Anytime you want a chat or a moan, bend my ear. Hope the sun starts to shine on all of us.xx

  • Mary_J
    Mary_J

    Posted

    Thank you Janet and you know the same goes for you too. Love xx
  • janet262
    janet262

    Posted

    Spoke to my specialist today he said that the reason it all started to go wonky was that the Methetrexate was not working and he upped my dose and doubled the steroids (so what is another stone or two between friends),, Anyway feel a lot better today. You are both little stars. Have a good week.xx
  • jaydee456
    jaydee456

    Posted

    I took Methotrexate years ago for my Rheumatoid Arthritis. One of many I had over time. Been on Plaquenil for years now.

    Glad you are feeling better Janet xxx

  • wendy5050
    wendy5050 jaydee456

    Posted

    Hi Hayden

    I have just read your travels with predisolone. I was diagnosed with temporal artiritis last year and now have a relapse. I started on 60 mg and this was tapered down to 1 mg. My ESR shot up to 70 last week and from Thursday am back up to 60mg. I have sore sinus and odd earache. Did your husband have these? I have has  very similar treatment and also a 're referral to NHS eye clinic pending for steroid advice. Is the reduction regime the same for your husband this time. Please give him my best and take care if yourselves.

    wendy 

     

    • jaydee456
      jaydee456 wendy5050

      Posted

      Hello Wendy sorry to hear you have relapsed.

      Hubby's regime is same as before. Started on 40mg then monthly reduction of 5 mg to 20 mg then 2.5mg reduction to 10mg, where he will be in about 10 days time, Then its down 1mg a month to Zero. Doctor says no more blood test but I am not really happy with that and think we will ask for one when he gets to 5 mg. Better to be sure this time that it is not slowly returning though it was 18 months after the final tablet before, His last blood test was really good esr and crp both about 5.

      When did you get down to 1mg ?

      Oh yes and he had no ear pain this time. Just the scalp stuff and a slight temperature. That was what clouded the diagnosis the first time I think. They assumed ear infection, though why that would cause him not to be able to touch his hair is beyond me.

      Jaydee

      aka Jean x

    • wendy5050
      wendy5050 jaydee456

      Posted

      Hi Jean. Thanks for prompt reply. Stick to your guns about blood tests. My ESR started creeping up a couple of months ago before the epic leap ! I will be keeping a very close eye . My husband is disabled and I feel so guilty not being able to pull my weight.

      Have a good night x

    • janet262
      janet262 wendy5050

      Posted

      Hi Wendy, hope you are feeling a bit better and the dreaded Prednisolone as kicked in.  Don't feel guilty just spoil yourself until it goes down again..  Take care Janet.
  • janet262
    janet262 jaydee456

    Posted

    Keep plugging away.  My ESR went down to 17 from 69 after 9 months and tons of steroids.   However has started going up again and my specialist said that the methatrexate which he gave me with the steroids, was not kicking in and now have to give myself weekly injections of the stuff.  Hate all these pills and the fab. weight have put on.  What happened to me???? Argh.
  • doreen25667
    doreen25667 jaydee456

    Posted

    Just joined the forum. Diagnosed last September with severe headache, unable to bear putting head on pillow. Had bilateral biopsy to confirm. Now reduced  to 12 mg prednisolone. Extremely tired all the time. Is this normal?
  • doreen25667
    doreen25667 jaydee456

    Posted

    i have had no ear pain, but as well as being so tired, I am also very breathless. My GP says this is ok, especially at my age (76), but it is totally new to me and I feel I can hardly get out without having to stop for breath.My GP has not taken blood samples since December, prefers to go by how I am feeling.
    • jaydee456
      jaydee456 doreen25667

      Posted

      Yes know what you mean about the blood tests. Ours said just come back if you get any pain. Thing is by then it means starting at the beginning again. I am sure they should monitor it more.

      Sorry you feel so poorly. Robin is OK apart from the weight slowing him down. That worries me too as he is always eating sad He is 72 btw) With me not far behind wink

       

    • janet262
      janet262 jaydee456

      Posted

      jaydee, get your Dr. to start sending you automatically for blood tests. I had a fab. one before she left the practice and have been sent monthly and sometimes even every couple of weeks for blood tests.  You should not have to wait until you get pain....
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