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waiting for a diagnosis...

Posted , 8 users are following.

cathy26772
cathy26772

My GP put me on 60mg Prednisilone when I went to see him about a temporal headache which had developped over about 6 to 8 weeks.

NO OTHER SYMPTOMS but the steroids took the pain away and made me feel rather unwell. PV blood was normal. I then saw a rhumatologist, he is not convinced that it is GCA but wants a biopsy (organised for 2 weeks time.) He took me off the steroids and the pain is back. It is not a very bad pain but it is there most of the time. I am wondering if anyone out there has had the same sort of symptoms and were then diagnosed with GCA?. I feel it could all be a bit of a storm in a tea cup but on the other hand I don't relish the idea of loosing my sight and feel I have to proceed with the biopsy. I am 60 by the way!

1 like, 9 replies

9 Replies

  • EileenH
    EileenH cathy26772

    Posted

    Why did the rheumy feel it WASN'T GCA? When they do the biopsy it doesn't always give a positive result even if it IS GCA - only about half of patients get a positive result - which is a 100% definite diagnosis of GCA. But a lot of things can cause a negative biopsy - the giant cells can skip areas and if they are unlucky or the sample isn't big enough they don't see them. You don't say how long you were on pred but every week you are on high dose pred reduces the chance of finding the cells by about 10% - as you noticed, the pred worked very quickly. So a negative result doesn't mean you haven't got GCA. About 1 in 6 patients don't get any raised blood tests so that is also not a 100% accurate indicator. 

    The best I can say is that if the headache gets worse or you get any visual symptoms at all go straight back to your GP, A&E if it is the weekend, and discuss it again. I take it you know what you are looking for? Blurriness or double vision, especially after just waking up, loss of vision of any sort however fleeting or feeling as if there is a curtain over your eye. Has the back of your eye been examined by anyone? If not then seeing an optometrist might be a good idea - they can see signs of any change in blood supply to the optic nerve.

    I hope though that it is all a storm in a teacup - because that would be the best result of all wouldn't it. But don't take an risks.

    • cathy26772
      cathy26772 EileenH

      Posted

      The rheumy thought that with the absence of general ilness, a negative PV blood test it was unlikely to be GCA. But I will not take chances and go along with the test even tho I am not looking forward to it. I was on Prednisilone for 2 weeks. Now off altogether. The GP did have a look at my eye but made no comment...
  • muirkelsi
    muirkelsi cathy26772

    Posted

    Good afternoon Cathy,

    I have had Polymyalgia Rheumatica since last November, and started on 15mg of prednisolone. I have now graduated to 5mg with only mild pain in my shoulders which is really not a problem. Today I wakened at 5am. with a severe headache which has only now diminished to a slight throbbing. My eyes are slightly fuzzy, but my actual eyesight is not bad at all.  I am going to wait a few days to see what happens, and if no improvement, I will go to my doctor. I see the rheumatologist in two weeks time and he may advise me to change my steroid dozage. I hope not, as I would like to be off prednisolone before the end of the year.

    I am 69.

    Regards,

    Grace

     

    • blodwyn
      blodwyn muirkelsi

      Posted

      Hi,I can't understand your statement that your eyes are slightly fuzzy but your ACTUAL EYSIGHT is not too bad?

      And why are you so determined to be off Pred by the end of the year?

      I think that any problems with eyesight needs investigation by an optometrist.They can look at the back of your eyes and know what to look for.

      Hope you get some answers soon. 

    • muirkelsi
      muirkelsi blodwyn

      Posted

      Sorry, I did not make myself very clear. My eyesight is fine when I am reading, but as soon as I lift my eyes from the page everything is fuzzy. I  had my eyes tested when I was last at the hospital, and the optomerist said that everything was fine. I do need glasses when driving, but this just feels different.

      The reason that I would like to be off the prednisolone is the problem with my weight. I have put on two stone, which is mostly around my waist even although I made an effort not to eat any more that before. I just do not look like "me" anymore!

    • blodwyn
      blodwyn muirkelsi

      Posted

      Hi,

      Now I understand where you're coming from.Pred does have some unfortunate side effects.I was diagnosed in December last and can't seem to get below 11 mgs and I've now got very wrinkly hands, a rounder face and my hair keeps breaking off so I've had to cut it really short which everyone seems to have noticed and comments on.However,the pain is such that I have to keep taking my meds at the moment.I also feel like I've become a different person in a very short time so I entirely sympathise.

  • Jersey_Royal
    Jersey_Royal cathy26772

    Posted

    Hello,  Yes I was diagnosed with GCA 18 months ago, it started with some aches and pains (not in the head) ,

    I had a blood test which came back negatve, so I was advised to see a chiropractor for the pains in back, but to come back to Dr if pains didn't go, I foolishly carried on through the pain each week to the Chiro, but then started very painful jaw ache, couldn't chew food because of the pain.  then started to get some blurred vision in one eye, thats when I went back she immediately put me on 60mg a day, and I felt 100 per cen better within 24 hours.    

    They don't seem to do biopsys here in Jersey, but I am doing very well,.

    Hope you don't have GCA, but if you get any jaw pain I would go back to DR inbetween waiting for you biopsy. 

     

  • denise76179
    denise76179 cathy26772

    Posted

    Hi

    I hope it isn't GCA but as the others have alluded to it could certainly be.  A friend of mine had a tempral headache and I assumed it might be GCA however after she went to the Dr she was given antibiotics for a sinus problem and  "walla" it fixed it in less than a week - so obviously there are other reasons for these headaches.  Hope yours is as simple - but keep in mind GCA is quite serious especially for your eye sight.  As they say if the pain persists see you DR

  • bedilia
    bedilia cathy26772

    Posted

    Cathy, I too have had a significant HA but most of my symptoms were geared more toward PMR.  GCA is not something to play around with!  It is good you are scheduled for a bx.  As far as the steriods go, he may have had you stop them because steriods can sometimes mask true symptoms.  I know when I was working as an RN I couldn't have the PPD skin test done for this very reason.  I always had to have a chest xray to r/o TB.

    Also Eileen has some very valid points.  Do not hesitate to go back to your MD and/or go to A&E if you have any visual disturbances!  Sometimes I have to wonder about physicians.  They are not the be all to end all that they like to think they are!

    Christine

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