Hi everyone. I am a female aged 66. I was diagnosed with PMR & GCA in September 2014. After suffering aches and pains for a long time things suddenly got worse following a spell of decorating. I had neck and shoulder pain which still hadn't improved 3weeks later, plus pains in my arms and legs and feet. The neck was very painful on just turning my head and the shoulders prevented me from turning over in bed. I went to my GP in June who suggested I increase the ibuprofen I'd been taking and gave me omeprazole as well, he also did blood tests suspecting possibly osteoarthritis as I had nobly joints on both index fingers, but said there could be some systemic inflammation going on. The blood test was borderline, I was told to carry on with the ibuprofen for another four weeks, then stop and have another blood test. The blood test was a little better, but in the meantime the pain had started up again the worst being in the early hours in bed when my hips also became very painful, sometimes the pain would ease after getting up and other times last for most of the day. My GP gave me sow release ibuprofen to take early evening to see if it would help at night. Fast track to beginning of September now. The slow release ibuprofen helped most of the time, butI started experiencing pains in my jaw after chewing, they went up both sides of my head and although I didn't get headaches as such, my head didn't feel quite right. I dismissed the jaw pain as stress. BUT at the end of September whilst walking my dog the sight in my right eye suddenly but gradually started to fade until I could see nothing but little sparkles of light, and then just as gradually it came back lasting just 20 minutes in all. I saw my GP the next morning, he tested and examined my eyes, and then I just happend to mention my jaw pain and he was on the phone straightaway to the eye unit at our hospital telling them he had a suspected temporal arteritis patient. I was sent home with Preds and told to take 12 (60mg) immediately. I was told at the eye unit that there was probably a problem with the blood supply at the back of my eye and to make an apt with the TIA clinic which I did for the following week.

The next morning my GP rang to say he had spoken to the consultant Rhuematologist and he wanted to see me ASAP. My GP also gave me aspirin to take. The rhuemy was pretty sure I had both PMR & GCA and was going to contact the vascular surgeons to do a biopsy. He also said to cancel the TIA clinic apt. The biopsy was done 15 days after first taking Preds. I saw my GP who said the results were negative and as there was very little sign of inflammation in my last blood test and as I had been feeling absolute rubbish from the preds, that being ...shaky, wobbly, fuzzy head and only 1-2 hours sleep at night, to drop the preds to 30 mg, he also spoke to my optician about a visual field test which I duly had and it was fine. I saw the rhuemy again in mid November, I still had some jaw pain but not as bad, plus tinnitus had now set in. Rhuemy said drop preds by 5mg per fortnight until I reach a maintenance dose of 10mg. He also prescribed Alendronic Acid and Calcichew. I was very unsure about taking the AA as I had read a lot about it, but another GP in our practice thought I should as I was to be on preds for a long time. So I started, but after taking it twice I realised I was feeling rubbish within a few hours, getting shaky, blurred vision, head worse and pain in both wrists. I must add that within two days of starting taking preds in the beginning I had absolutely no pain at all, wonderful! For the first time In years I could get in and out of the bath - no problem, also the car, and up and down the stairs, and get dressed so easily! however I went back to my GP about the AA and he took me off them and gave me risedronate to try. These were much better, plus by now I was sleeping much better and able to do a little more each day. Up to the present now and I find myself not so good. Somedays a bit shaky again, head not right and tinnitus louder, I am also getting just a few twinges of pain here and there, and now and then. I am looking at my diet as I know I have given in on occasion to things I shouldn't eat, but also as I was feeling better I started gardening and doing more around the house, may be I've pushed myself a bit too much, or a combination of the two. I see the rhuemy again in 2/3 weeks time so am wondering what he may say. This is my story, sorry it's so long but I wanted to give a reasonable picture.

3 Replies

  • Hi Sandybo,

    Not sure what dose of Pred you are on now, but I would suggest it's not high enough to control the inflammation/pain. And in that scenario its not doing you any good. In early stages in some people is difficult to say what pains etc are attributed to steroids, and what to PMR/GCA. However, from personal experience I would say the head pains are likely to be GCA. In that case you need to increase your dosage. If you increase by 5mg a day, it will take only a few days for the pains to diminish if it is GCA.

    You also need to remember to take things easy - until the cells in your blood vessels are reduced you are not getting enough blood around your body, not enough oxygen, not enough energy. So rest more, when you can. Good luck DL

  • I agree with DL - I think you would be better with a higher dose of pred. The time it was between starting pred and the biopsy would be enough to reduce the chances of it being positive quite a bit and it is only positive in about half of cases anyway.

    Nevertheless, you were probably on high enough pred for long enough to avert the worst risks and many doctors are of the opinion that 15mg will deal with most GCA symptoms.

    You obviously had PMR as a symptom - and that has been fairly well controlled but you may have overdone it - rest is an important part of management. You could also be having a slight flare. When you see the rheumy do emphasise the head and tinnitis. Is the jaw pain back?

    On the whole though I think you have done pretty well - a GP who recognises GCA is rare! And he wasn't totally set on AA. Welcome to the club - and may all your flares be little ones!!!

    Do tell us how you get on next time

  • Thank you DorsetLady and PMRpro for your replies.

    I am on 10mg pred at the moment this has been since the end of December.

    I am due a blood test in a few days and am preparing a list of what I want to say to my rhuemy so that I don't forget when I see him.

    I joined PMRGCAuk last November and can't believe I left it so long before joining the forum, it is a wonderful source of information from people who really know........the sufferers!

    Thank you.

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