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recent diagnosis of GCLA

Posted , 10 users are following.

maureen63465
maureen63465

 I have recently been diagnosed with GCLA. After being discharged after one visit at Kings Mill Hospital because my blood test shewed no inflammartory markers. I was seen at Chesterfield Royal Hospital and diagnosed with the above. At both places I was displaying many symptoms and visual problems. I thought at first I had started with a left sided migraine but it continued for two weeks with scalp and temporal tenderness. I was sitting with my eyes closed because of problems focusing but the first Doctor ignored my symptoms. I am now on 40 mgms of prednisalone and visual problems improved very quickly.

I was treated by my GP in the past for a similar attack but not as severe and was given Prednisalone prophylactilly.

I am having a Temporal Biopsy in the next few days though these are not always positive. I had another test similar to the one for colour blindness and was shocked that I could not see the figures in the spotted circles. I'm not sure what this is called. I scored nil for left eye and 13 out of 15 for the right eye.

I have problems with Polymyalgia as well and flare ups occasionally.

Despite this I am a very positive person and try to enjoy life as much as my age will let me. I am a young 79 year old.

I think having this sort of attitude can help a lot to ease pain because life is for living.

2 likes, 14 replies

14 Replies

  • EileenH
    EileenH maureen63465

    Posted

    Sorry to hear of your trials - what a shame your PMR has progressed to GCA. I do hope - in a way that is - that the biopsy is positive because then there is no argument as to what it is. And I'm pleased to hear your doctors are aware of the fact that a negative biopsy doesn't mean it isn't GCA. You would be surprised how many don't appear to know, even so-called experts!

    I'm sure there will be others along to welcome you - and you sound to have a very positive attitude which does help a lot!

    Look forward to hearing more from you and hope it is all good.

    • paul45653
      paul45653 EileenH

      Posted

      If one has a negative biopsy and normal blood work, how can a GCA Dx be made? Its a long trip to go on if you are just starting mild symptoms such as occasional intermittent mild pain in the temple area. I am on the lookout for GCA since I have a20% chance, but what am I really looking for? Is age a factor? General health? Gender? anything else?
    • EileenH
      EileenH paul45653

      Posted

      A diagnosis of GCA is finally based on the clinical symptoms and yes, it can be a long trip. I probably have involvement of larger arteries - but as long as the pred keeps it under control no-one wants to investigate any further.

      A trial has been done comparing ultrasound of the temporal artery and a couple of other easily accessible arteries and it showed that U/S is as reliable as TAB. That, however, requires a trained and experienced technologist or doctor to do the scan - which will pose a problem in the UK, probably less of one in the US. You can also now find inflammation using PET/CT or PET/MRI scanning - but it requires the special equipment and it is very expensive so only found in highly specialised centres and not really applicable for routine scanning. You can have GCA without it ever affecting the temporal artery or other forms of vasculitis that don't produce giant cells.

      And no - there are no known factors that make you more or less likely to develop GCA. In people with bloodwork that suggests inflammation is present some doctors say a higher blood level is more likely to mean more inflammation and so probably GCA. Normal level markers take that out of the equation.

      The pre-disposing factors? Already having been diagnosed with PMR, in which case you are more likely than someone without PMR to later develop GCA. Or any form of autoimmune disorder which raises the likelihood of developing another one somewhat. But you can develop GCA without ever showing signs of PMR so in some ways having PMR is an advantage as you are then aware of its existence - most people had never heard of it before it appears. Women are slightly more likely to develop both PMR and GCA than men, about a 2:1 ratio.

      Feeling flu-ey plus headache, jaw pain when chewing, scalp pain, any loss of vision are amongst the symptoms that should send you to the doctor - and you don't have to have any or all so anything affecting your vision, however briefly, should trigger an immediate visit to the doctor as an emergency. Even 999 (in the UK) is justified - because visual symptoms can be a sign of stroke and that, like GCA, is a medical emergency. 

  • Guest
    Guest maureen63465

    Posted

    You may need to stay on higher levels of pred for quite a while even if you do not get a positive biopsy. Mine was positive because my GP reduced pred very fast and all horrible GCA came roaring back right when I had the biopsy. The surgeon knew to take multi samples from a long piece of artery in my right temple where the artery was bulging! I am most concerned about your eyesight...keep after that. You are SO encouraging with your positive attitude! Here is special hope that you feel better soon🎉🎉Ann11195
    • maureen63465
      maureen63465 Guest

      Posted

      Thank you for your encouragement Anne. Trouble is, like the first Doctor I saw some  only look for text book signs and should remember all symptoms can be slightly different. I am fortunate to belong to a very good GP practice who believed me. But not all are as fortunate as me It is only now I am improving that I realise how ill I felt initially. I don't suppose it helps because I always get dolled up and wear makeup. There is a deterioration in my left eye and I had a field test this last few days which I don't think was as good as the last one. Fingers crossed I'm ok. Maureen 63465
  • Anhaga
    Anhaga maureen63465

    Posted

    I hope that your treatment is successful.  Whatever you do, don't let the doctors reduce your dose too soon and too quickly.  A while ago someone said on one of these forums "It isn't slow if it works" and I think that is a good motto.  All the best!
    • maureen63465
      maureen63465 Anhaga

      Posted

      Hi Anhaga,

      Many thanks for your reply. The Doctors have told me I will be on Prednisalone for at least 2 years plus Omeprazole and Calcium tablets.

      It is great to have back up support from such nice people on this forum

      Thanks once again Maureen.  63465

    • jeanne333
      jeanne333 maureen63465

      Posted

      It is hard, I know, so many setbacks. My doctor is new to me, as i just started seeing him last Nov.; but he does seem to listen to me. On 20mg of prednisone I can function, he just reduced me to 17th for 2 weeks and I'm now having pain across shoulders and back of neck (7 to 8), also having trouble breathing and walking. Going back up to 20mg, hope he agrees. Just smile and have a Beer or Two .. lol
    • EileenH
      EileenH jeanne333

      Posted

      Ask him to allow you to reduce 1mg at a time. Three 1mg reductions done over 6 weeks or so that work are infinitely preferable to a 3mg drop that causes problems and stops you reducing.
  • Susanne_M_UK
    Susanne_M_UK maureen63465

    Posted

    Hi Maureen.

    I was diagnosed with GCA at the end of 2014, following 4 years of PMR which was almost gone.

    As others have said, don't let the doctors reduce your pred too quickly. I've had several flares and have been up and down on my dose several times. I've never got below 20mg and am now on methotrexate as well to try to taper the preds more successfully.

    It is indeed a long slow journey, but having a positive attitude like you have is a great help I think. I had to give up a job I loved, but the positive has been that I've been able to concentrate on my painting, which is becoming much more than just a small hobby.

    Keep in touch on here and let us know how you are doing. It's a great community.

    • maureen63465
      maureen63465 Susanne_M_UK

      Posted

      Many thanks Susanne,

      Like you, I have also taken up painting. It is a rewarding hobby and you tend to forget problems when doing something interesting

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