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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

    Posted

    I developed pains in head, couldn't put it on pillow, Hurt to chew. Doc. gave me creamj to rub in. Felt really exhausted one night and went to local after hours doc. who sent me to hospital. ESR 69, diagnosed Giant Cell Arteritis. Straight on steroids, high dose. Feeling a lot better ESR 19 now and been referred to rheumatologist who together with wonderful Doctor are keeping good eye on me. Some days are better than others but just feel lucky. It could have been so much worse. Unsure of prognosis. Afraid to ask. Also weight up Argh.
  • jaydee456
    jaydee456

    Posted

    Hello Janet.

    Long time since I made this post and so happy to say that hubby is fully recovered.

    He was on steroids for 18 months slowly reducing the dose.

    His blood tests showed steady improvement all the way. Saw his specialist earlier this year and he was discharged with the comment it should not return.

    The weight came off slowly by the way when he came off the steroids.

    Hope all goes well for you too.

    Jay

  • elisa4
    elisa4

    Posted

    Your husband was very lucky that he did not get a stroke.

    Please tell me, was he on prednosole at all at the time it happened or did he go on afterwards?

    If he was on prednosole on how many mg?

    It would mean a lot to me if you could answer that question to me.

  • jaydee456
    jaydee456

    Posted

    Hi Elisa.

    No my husband only got the steroids when he was diagnosed, He was put on 40mg Prednisolone and had to reduce the dose monthly over about 18 months having regular blood tests which quickly showed he was doing very well. He has been fine ever since and has been discharged from the consultant Rheumatologist.

    Yes he was very lucky. He had previously had a mini stroke that caused double vision. Was put on aspirin and Statins that time.

    All the very best to you

    Jay

  • Mary_J
    Mary_J

    Posted

    Hiya Jay, I was diagnosed with GCA last October. I was on 60mg Preds until Dec then reduced to 50mg until Jan then 40mg. Hopefully will reduce to 30mg at the beginning of Feb then to 20mg at the beginning of March. My bloods are at normal levels at the mo and I'm relatively ok. The Preds play havoc with my legs though. So wobbly. I have fallen a couple of times because of just tripping over a paving slab or just my own feet. I haven't got good balance either but I just keep telling myself it's the Preds and My dosage is slowly coming down. Oh I forgot to mention my moonface and extra weight!! I'm so glad that your husband has recovered. Hopefully in a couple of years I will be the same. Take care.

    Regards

    Mary x

    • wendy5050
      wendy5050 Mary_J

      Posted

      Hi Mary

      I have just joined and replied to jaysee. My TA has come back after getting from 60mg predisolone to 1 mg. Mr ESR shot up to 70 last week so I'm back up to 60. Feeling gutted as has similar history to Jaysees husband. I have sinus pain and feeling a gritty throat this time a d have been wobbling too !! I am 64 but feel ancient and so frustrated. Hope to keep in touch with you. Look after yourself x

  • jaydee456
    jaydee456

    Posted

    Hi Mary.

    Consultant signed him off saying it should not come back in March last year.

    Unfortunately he had a recurrence in September. Just as we were off for a short break he was feeling off colour, by the end of the week the sore scalp and head pains were happening again.

    Got a blood test form the day we came back on Friday and a test on the Monday. ESR and CRP way up again. Doc treating him this time, exactly same start off on 40mg Prednisolone then down by 5mg monthly to 20 then 2.5 mg to ten. then 1mg a month.

    Lets hope this is the last time it happens. Know aht you mean about the Moon Face. He is so fed up as he has gained two stone in weight.

    Blood tests are good though. Went right down on first test. Outdoor bowls will be starting again soon so he can get out with his mates through the summer.

    Jay x

  • Mary_J
    Mary_J

    Posted

    Aah! So sorry to hear that your husband has had a re-ocurrence. That's really bad luck. Let's hope he will recover quicker this time and his reductions go well. I am down to 15mg now but had a funny few days last week, feeling unwell and very unsteady on my feet and my right hand and index knuckle swelled up and became very discoloured. The swelling get has gone down somewhat but is still discoloured and painful so I'm hoping to be able to see my GP in the morning. We'll see. Well take care Jay and wish your husband good luck and I hope he enjoys his bowling. Love Mary Xx
  • janet262
    janet262

    Posted

    Hi. Am feeling particularly fragile at the mo. My ESR went down to 17 and I was reducing the vile steroids (mMoon face and 1.1/2 stones later) and was down to 10mg. and methatrexate and all of a sudden I am getting soreness in my head and jaw and tired just like it was 9 months ago when it started. My wonderful Dr. has changed surgeries and she really looked after me so feel quite lost. Fed up of going to the Dr. and me having to tell them everything from A-Z instead of the other way round. Can't understand why ESR is down and yet I have all the symptoms. Heeeeelp.
  • jaydee456
    jaydee456

    Posted

    Thank you for your good wishes Mary J. Hope they can sort you out ASAP. Janet so sorry you are struggling. It does sound mysterious. I hope you get an answer soon . Hubby's problems with the steroids is bouts of sweating and of course the hunger and weight gain. Looking back at my original post I see he has gained more weigh this time. Think it's the biccys sad

    Hugs to both of you Jay x

  • janet262
    janet262

    Posted

    Hi Jay, thanks for the good wishes particularly as you must be getting the brunt of this nuisance of a condition. Tell your hubby that I understand the biccy bit. Lost sense of taste so only enjoy sugar. (that's my story and I'm sticking to it), The hardest bit is coming to terms with not being able to do the things I took for granted and not being 100% confident that the professionals know what they are doing with me. Anyway Spring is on the way. Chin up, Janet.x
  • Mary_J
    Mary_J

    Posted

    Hiya Janet and Jay due. I too can sympathise with the biccy bit. Anything sweet really and the sweeter the better so that doesn't help with the weight thing!!! My taste is terrible too so it's either sweet or very spicy foods for me at the moment. Oh the joys of steroids!! A necessary evil though unfortunately. My confidence has taken a knock as far as my driving is concerned too. I don't mind just popping to Asda as the roads are so familiar but as for anything else my husband does the driving. Oh well people we just have to plod on. Good luck to you, and me too. Love x
  • janet262
    janet262

    Posted

    Just got back from hospital. Pains got really bad in head and jaw and they found that inflam going up again so doubled the steroids until I see Rheumatologist. At least glad they are sorting it as was getting frightened. Celebrated diagnosis with Smartie Icecream from McDonalds. Highly recommended to your husband Jay. x
  • Mary_J
    Mary_J

    Posted

    Hiya Janet. So sorry to hear that you're having a flare up again. It's a bitch of a condition isn't it. Really hope you will recover quickly from this set back and get back on the road to reduction. I saw my GP this afternoon about my hand swelling and the discolouration and he thinks that it's to do with the aspirin I'm taking. It seems it may have been a spontaneous bleed under the skin due to the meds I'm on. He has taken bloods for my clotting levels and platelets. I'll get the results on Wednesday hopefully so well see what they find. You take care. Best wishes x
  • janet262
    janet262

    Posted

    Mary, I do hope that they sort your clotting levels out quickly. Unfortunately the effects of the blinking medication can feel as bad as the illness. You know this forum is quite liberating. I don't think that anyone can understand how we feel except those that experience it first hand or like Jay, has someone close.With me, it is frustration also as I have always shaken things off and been active and hated taking pills and seeing doctors even when there was no choice, but at least I had some sort of choice. With this GCA, there is no choice. Anyway, feel better having a moan from time to time. Keep smiling and hope your tests come back in a way that makes you smile. xx
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