Should I be concerned?

[Griggser]

I was diagnosed earlier in the year with PMR and put on predisolone right away. Started at 15mg but had to go up to 40mg a say. Managed to get down to 17.5 but flare up saw me back on 40 mg. now down to 22.5mg. The worry I have is I have been having a lot of headaches which are definitely temperal. I saw the Dr a couple of weeks ago and he was happy it's not GCA. However I'm not so sure now as the headaches seem to be getting worse and are now almost constant. I have an appointment with my Rheumy on the 14th Aug but wondered if I should go back to the doctor before this? I did have to have new glasses recently as I was having trouble with my right eye seeing properly and the prescription changed by two incrents since March this year which was not long after I started the steroids. should I be concerned?

[Celtic PMRGCAuk volunteer]

Grgiggser, is there a rheumatology helpline at your local hospital. If so, perhaps you could give them a ring explaining about your worsening vision and head pain and see if they can bring your appointment forward to this week. If there isn't a helpline then ring the rheumy's secretary. As with GCA, steroids can also affect the eyes but with your increasing head pain it certainly needs investigating. If it was me and I couldn't get an emergency appointment with my rheumatologist I would go straight to A&E - better to be sure than sorry. Good luck and do let us know how you get on.

[Griggser in reply to Celtic]

Thanks Celtic. I have called the consultant and he is on holiday to next Wednesday which is the quickest I can get to see him.

[PMRpro Ambassador]

If you developed GCA originally (you don't say but I assume that since you were put up to 40mg) this is very early to be below 20mg and it has been shown there is still disease activity on GCA after 6 months at above 20mg. Flares of GCA are common in the first 18 months of treatment and the primary cause of a flares in both PMR and GCA is reducing the dose.

On what grounds is your GP so sure it isn't a flare? The dose you are on at the moment isn't enough to prevent a flare - different matter to PMR altogether.

If your GP isn't helpful try ringing the consultant's secretary and explaining the problem - they are usually very helpful.

Ah - just realised you've tried that. In that case - if it gets any worse, go to A&E. They can examine you far better than a GP and there will be a duty rheumatologist they can ask for advice.

And yes - we want to know how you get on!

[Celtic PMRGCAuk volunteer]

Hello again Griggser, then yes, if it was me, I would go off to A&E and get checked out - nothing to lose and everything to gain. Good luck!

[Griggser]

Just returned from appointment with rheumy and he has suggested I go on methotrexate staring at 20mg and building up to 40mg. This will mean two weekly blood test for red blood cells checking. He did say that I appear to be one of those people who are a bit steroid resistant as I am now down to 20mg of preds and the hip and shoulder pain is increasing. We discussed the headaches I have been getting and he was happy that it is not GCA. I did feel he listened carefully to what I said and considered everything and came up with a balanced diagnosis / treatment. Let's see how things go over the next 2 - 3 months as the methotrexate takes some time to have an effect. He did advise that if I find it difficult to cope with work, I am having to have sleep most afternoons, that I should consider a period of sickness to get the rest I need. It is frustrating that initially I felt better but now feel pretty rotten again.