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GCA Experiences

Posted , 9 users are following.

audrey25251
audrey25251

 The discussions on this site tend to centre around PMR and they are always interesting and often useful. However I would like some input from others who suffer from GCA. I went blind in one eye about 14 years ago and saw a consultant at Moorfields who said nothing could be done. PMR and GCA were not diagnosed. More recently I started to lose the sight in the other eye and went very deaf. I had already been diagnosed with PMR and given low doses of prednisalone which did help a little. Like so many contributors to this site I found GPs varying wildly in their prescriptions of prednisalone. One called 10mg a high dose and wanted me off them as quickly as possible; another said I should increase the dose.

Eventually I saw a consultant opthalmologist and a consultant rheumotologist, but even they did not agree on the dosage of prednisolone. Finally they agreed on a massive dose of 60mg pd which I have been reducing gradually. I am now down to 22mg pd. I do not have a great deal of pain from the PMR but am largely confined to a wheelchair, while the loss of sight and deafness are worsening. I do not expect miracles and the restoration of my sight and hearing but I would like to prevent them worsening further.

So, has anyone had a similar experience and have they managed to halt the progressive loss of sight and hearing? I am most anxious to hear other peoples' experiences.

2 likes, 27 replies

27 Replies

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  • misdiagnose
    misdiagnose audrey25251

    Posted

    I think the mystery is related to the cause/s of auto-immune illnesses and how they change and differ for each individual.
  • misdiagnose
    misdiagnose audrey25251

    Posted

    Theere is not a 'test' for a huge number of illnesses and doctors need to stop treating patients as though everyone is a hypochondriac. In the days before 'if there is no evidence for it, it is not there', doctors knew their patients, listened to their patients, looked at their patients, noticed when a patient complained about minor ailments or only visited the doctor when very unwell. It's been a long time since a doctor asked me any questions. How can they ever hope to diagnose and treat without asking questions, just leaving it to the patient to tentatively offer a couple of 'complaints' when another ten are not mentioned so as not to overburden or sound stir crazy. There are good doctors and bad doctors. Anyone can make a genuine mistake but I am on the case of those who are just burnt out and don't bother to take time out to rest because they are too greedy, or the ones who don't bother to do regular training or the ones who are arrogant and nasty because they know they can get away with it because a patient is too seriously unwell to complain.
  • audrey25251
    audrey25251

    Posted

    Thank you all for your advice and encouragement. It looks as though I will have to wait and hope the prednisolone eventually stops the deterioration. I have no confidence that the medical fraternity can do anything more than that. GCA it appears can be treated but not cured. I shall visit the various forums (should that be fora?!) for support. Best wishes and good luck to all of you
  • misdiagnose
    misdiagnose audrey25251

    Posted

    Dear Audrey, have you managed to get a good consultant? You should be under the hospital for regular checks. Inflammation of the arteries (GCA) can only be held in check by prednisolone, but the drug does give the body a chance to heal itself, which allows the drug to be reduced in small stages. I am concerned that you have been failed already and I hope will not be failed again. There is no replacement for competent and responsible professional care which we might need to fight to get if it is not offered. If you don't have a good professional whose treatment you trust. I want to stress that one method of fighting for your rights is to take an advocate with you to your appointments and request that you receive prevention of further damage to your temporal and other arteries. You should be receiving diabetes and blood pressure monitoring, cholesterol and other tests to see if you need other medication which could prevent further artery damage. I do hope you get this. I also have GCA and know the problems of getting proper care and the immense anxiety and distress involved. My thoughts are with you.   
  • audrey25251
    audrey25251

    Posted

    Thank you misdiagnosis. I don't think I am being badly treated by my consultants. I just don't think there is much anyone can do apart from prescribe prednisalone and keep monitoring. This forum has confirmed me in this view. I am being monitored monthly by my GP for Cholesterol, diabetes etc. Thanks again
  • misdiagnose
    misdiagnose audrey25251

    Posted

    Hi Audrey, if you are under a hospital consultant for regular check-ups to monitor your blood pressures (4 limbs), blood workups for cholesterol, diabetes, ESR + CRP, etc., and checking for the pulse in your temples, you are getting as much assistance as can be hoped for. If you have headaches or any other pain, see your GP incase there is problem with a blood vessel somewhere in your body. Wishing you a comfortable Xmas and that the New Year brings relief from this awful illness.
  • audrey25251
    audrey25251

    Posted

    One thing which is very common in these discussions is mention of elevated ESR and CRP. Although I have regular monthly blood tests I do not know what my ESR and CRP actually are. I wish to quiz my GP on this, so could someone tell me what is considered a high level of ESR and CRP? Thanks.
    • EileenH
      EileenH audrey25251

      Posted

      What the normal range for any test is depends to some extent on the laboratory where the test is carried out so you will still need to check with your doctor what your local lab says.

      However, the ESR normal range is usually less than 30 for people of PMR age. It is a figure, the number of mm the red blood cella settle in a given time - like mud settling to the bottom of a pool. Your ESR is zero at birth and then rises slowly with age. It is slightly higher in women than in men and it used to be said that you could work out what the highest ESR you should have at a given age by (for women) taking your age and adding 10 then dividing the result by 2. So at age 50 a normal ESR for a woman would be a maximum of 30. ESR is affected a lot by simple infections, such as colds, and the handling of the blood sample is also important. It should only ever be taken as a guide.CRP is a a substance in the blood which is less affected by colds and so on so is felt to be more reliable. It depends what measurements they use at the lab but Southend hospital says it should be less than 8mg/litre, the vast majority of people have levels less than 3mg/l. It rises in response to injury or infection but falls again as the damaged cells recover - but in PMR and GCA will remain higher than normal as they are chronic illnesses. Pred combats the inflammation so the levels fall.

      To complicate things though about 1 in 6 of patients with PMR or GCA do not develop raised levels of either. I am one - I have never had a raised "acute phase response marker" (which is what these are called) in the over 10 years I have had PMR. So it must be emphasised that they are a guideline and only a guideline. For someone who does have raised levels they can be useful for monitoring how the pred is working - but are not 100% reliable.

  • audrey25251
    audrey25251

    Posted

    Thank you Eileen. i searched all the websites I could think of but none gave much information. You have explauned it succinctly and understandably. I  now will know more what I am talking about when I discuss it with the GP. I am truly grateful.
  • sarah65055
    sarah65055 audrey25251

    Posted

    I have Wegener's/GPA. I was diagnosed when I was 61 in June 2009. I was so misdiagnosed for years, I lost most of my hearing in my right ear. I have lost most of my sight in my right eye. My face has deformation on the right side, so many of my problems are on the righr side of my head. But my upper sinuses stay stopped up all the time. I feel so along because no body knows or cares how bad I feel. I don't ever feel good. I have vertigo so bad. I'm constantly falling. I feel that I have had this all my life vecause I have always been sickly. I had my first severe sinus infection when I was 18 years old. All my life I was contantly sick with sinus infections, ear infections and hurting, aching extreminities. I could not tell you how many sinus infections I have had. I took so much prednisone that I had catarects in both eyes while I was young. I feel for you. I feel so sorry for anybady that has my afflictions and problems.

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