Fingers crossed, I'm fine so far

Hello

As a newbie, I'll relate my journey to date. I can't recall any stress or viruses, but I had worsening symptoms of runny eyes, jaw/ear ache, sore neck and headache. Over 3 weeks this was diagnosed as hay fever (pharmacist and GP) and sinusitis and possible Norovirus - reaction to antibiotic (GP). Still, with a crashing one-sided headache, on 1st April 2017 I called a locum. On questioning, he immediately diagnosed GCA, took a blood test, which later that day gave an ESR reading of 93 and put me on 40 gm Prenisolone. The symptoms diminished within a couple of hours. Mid April, I saw a rheumatologist, who gave me a GCA leaflet and said I was intelligent enough to manage reducing the steroid! Two days later, a had a biopsy which confirmed the diagnosis, although it did give me an infection. My GP said to raise the Pred to 60 mg, briefly.

After surfing the internet, I joined PMRGCA and visited my nearest local group - High Wycombe 45 miles away . They made me very welcome. It is comforting to know you are not alone. This site was suggested and I have been reading it daily ever since.

Last week, I had a blood test and saw my GP today with the results. She seemed generally pleased with my progress. My ESR is 8. I have gained half a stone, despite cutting out most carbs except for the odd 2-3 shared bottles of wine a week - well there must be some enjoyment in life! My BMA is around 30. I have porridge with cinnamon for breakfast and a small tin of sardines with salad for lunch. Supper is meat or fish with lots of veg, rarely a dessert My calcium levels, with the help of Alendronic Acid and AdCal are good, as are cholesterol levels. Aspirin makes me bruise very quickly, though. I have been taking Lansaprazole for some time. My present Pred dose is 12.5 and those results show I can now reduce to 10 mg. I see the rheumatologist again at the end of October, so I can discuss with him (if all is well) slowly reducing further, as recommended in this forum.

Occasionally, I feel lethargic. I have a mildly sore neck and don't sleep well (a problem before taking Pred). Reading this forum, I think I am fortunate so far. I will keep you updated and thank you all for the invaluable discussions.

Christine aged 72

6 Replies

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  • Hi Christine,

    Good to hear you're coping well with GCA.

    Lethargy is par for the course I'm afraid to say, can be caused by both GCA and Pred, and the Pred is also the cause of your bruising, it thins the skin. So a good moisturer every day is required, doesn't need to be be expensive, Double Base gel is good, and Arnica cream for the bruising.

    Although your ESR results are good, they should be, that's proves the Pred is doing its job, but when reducing your symptoms are the key. Drs base a lot on the readings, but they only back up what your symptoms are doing.

    If you feel good in yourself, and your readings are good then reduce, but if your systems come back, even slightly or you don't feel right, then don't reduce.

    You will also find that as you get lower in dose it becomes more important to reduce slowly and in small steps otherwise you could drop below the level of Pred you need to control your symptoms.

    Good luck.

  • You seem to be managing well so far and good to hear about the efficient locum and that you have local support.

    My questions are, why are you on Alendronic Acid? Have you had a DEXA scan to confirm you have osteoporosis? Have you had the level of vitamin D in your blood measured? Alendronic Acid is not effective if vitamin D level is low. I took a daily supplement for 8 months, after which the vitamin D level in my blood (never tested before) was way too low. I was then prescribed a megadose for 8 weeks to top it up, before I started a bisphosphonate drug, similar to Alendronic Acid, for proven osteoporosis.

    There is a lot of discussion on this forum about this and I'm sure others will have their say.

    Best wishes.

  • What an inspiring story! Glad you are managing well I wish you continued success.

  • You seem to be doing really well- long may it continue! Your diet except breakfast( I have fruit, yoghurt, honey and flaked almonds) exactly the same as mine!

  • You are doing well. I sympathise with the bruising it's my major symptom now and both my right leg and arms are covered in them. I used to get very upset but now go straight to the camouflage makeup and if I can't see them it doesn't bother me.

    Dorset Lady is right, you need to be extra careful when you get to the lower doses. I made brilliant progress then flared at 3mgms You mentioned your ESR but not your CRP, that's important as it changes on a daily basis. GCA is determined by both your blood chemistry and your clinical symptoms.

    I agree you also need to know why you are taking AA

    Keep up the good work with your eating habits, it really makes a difference

    Good luck

    Edith 76

  • I think my CRP level is 2, if I'm interpreting the blood test correctly. As I was prescribed AA, I take it, but can query that when I see the Rheumatologist in 5 weeks time. As one grandmother probably had osteoporosis, I qualify for a dexa scan and that is being arranged.

    What a wonderful site this is! Thanks!

    Christine

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