UPDATE ON GCA RELAPSE

[Heather270240]

Last week I sent a post explaining that my GP said I had a return of GCA because my ESR had risen from 21 to 43. She immediately put me on 44 mg of Pred. I had recently recovered from a very bad viral infection and had been experiencing headaches on and off and a tender scalp however I thought 44 mg was a little over the top and after 3 days I reduced it to thirty and now to 20 mg. However on Tuesday I went to see another GP at his request. After looking at the screen for a few minutes he asked how I thought we should progress. I was a little perplexed by this question and suggested that perhaps a further blood test to see whether ESR has gone down after taking the high dose of Pred. I also suggested perhaps an eye test to ensure my good eye is OK. Good idea he said I will send a letter and arrange a blood test and that was the end of the consultation. Didn't ask how I was or anything about my symptoms.

I had the blood test and the result came back today. The surgery told me it had dropped to 21. I expected a follow-up with GP but no he put a note on the screen to the effect that he had seen the result and no further action was required!! So in effect he has left a patient on 40 mg of Pred with no directions on how or when to reduce. I am once again left to my own devices. I will have my eye test on Monday and depending on the result will contact a private Rheumatologist for peace of mind if nothing else. I feel very envious when I read posts about GPs who are so knowledgeable about PMR and GCA. I certainly don't have one in my surgery. I still have a slightly tender scalp but no headache or jaw ache.

[SnazzyD]

It can work both ways with inattentive medics. It does mean you can be ‘creative’ without the stress of being told off, but it doesn’t provide a safety net if you make the wrong decision. At the very least it feels like they aren’t doing their job but still call themselves professional. Given that you still have scalp tenderness and an ESR that is still thinking about it I wonder if you may have reduced a bit quickly and possibly the 40mg was the belt and braces that you need for a bit longer especially as you have your eye to look after.

[PMRpro Ambassador]

To be fair - the knowledgeable ones are in the minority! Unfortunately!

[SheffieldJane]

That is similar to my experience of GPs too. I agree, you do need knowledgeable guidance now. I wouldn’t reduce anymore whilst you still have scalp tenderness, I might even increase a bit because it is a sign of inflammation. The whole thing maybe related to the virus but you can’t mess about with GCA. We’re you never referred to a Rheumatologist? It is usual to be,with GCA.

[Heather270240 in reply to SheffieldJane]

Hi sheffieldjane. No I haven't seen an NHS Rheumatologist for several YEARS. I saw one privately 2 years ago and I will return to him if necessary.

[Hidden]

Hi Heather270240. I have had similar experiences. Without the help of this forum, I would be in trouble big time!