Follow up to 'I need to rant'

[Louisepenygraig]

When I last wrote I was in quite a bit of pain and not sure where to go next. Since then I've had a phone consultation with my GP and a blood test. The GP wanted me to continue to reduce the steroids as fast as possible so I continued to reduce to 10 on a slightly faster schedule than Dorset Lady's. I'm off to visit my daughter in the US at the beginning of April and really wanted to be 'settled' on 10 before going.

I've just rung up for my results and my ESR is back up to 36 and my platelet level is high too. I have another phone consultation booked for tomorrow.

I'm not sure how I feel about the raised ESR - it's good to have confirmation that the way I feel isn't 'all in the mind' but I think I'd rather it was steroid withdrawal that I could work through. Has anyone else had raised platelet levels?

When the doctor first told me I had PMR I came home and looked it up and wasn't convinced that was the problem - I have never had the severe pain and stiffness that most people describe. However when the steroids worked I decided maybe he was right and it had been caught early enough that the symptoms hadn't developed enough. Now I just don't know. I'll just have to wait and see what tomorrow brings.

[PMRpro Ambassador]

For the moment - who cares. You have a medication that works and you need enough to keep you symptom-free until you get back from your daughter. I was first given a 6 week taper to get me through a US trip and it made it doable - without it it would have been horrible.

Everyone's expression of PMR is different - I lived with it for 5 years before it got so bad I couldn't move for a while as a result of a flare.

You have inflammation in your body and it is causing you problems. You will get to 10mg but it will be in your body's time and not because you - or anyone else - WANT to be there. And it may well be that if you go about things a bit slower you will manage to get to 11mg before long. But there is no point being on too little and you have been messing about with the dose, that never helps, and trying to do more than you really should I suspect.

[Louisepenygraig in reply to PMRpro]

Thank you so much for that, it's what I needed. I was worried about the raised platelet count but have read that steroids can have that effect. I'll see what the doctor says tomorrow.

[PMRpro Ambassador in reply to Louisepenygraig]

Ooops - sorry, forgot to address that! Yes, pred increases platelets (which is part of the reason they used to suggest that GCA patients take low dose aspirin, it is an anti-platelet agent) and it also increases WBC levels, especially neutrophils which push up the toal level.

[Louisepenygraig]

I've spoken to my GP this morning and he was very helpful. Sometimes these days he can seem quite rushed but he was great today. He conceded that I'm one of those people where it's just going to take longer and suggested I go back up to 12, or even 13 if that's what is needed and then to get a blood test when i come back. He says it's important that I am able to enjoy my time with my daughter. He's put me down for 100 1mg tablets when I renew my prescription so I have plenty of leeway. The platelet levels werent raised much so that's nothing to worry about.

I'm feeling much happier today ☺

[BonnyQuine]

An ESR of 36 sounds good to me! Mine's usually around 30 or just above. It was 86 on diagnosis (GCA) and 71.9 last month (flu?). There seems to be quite a lot of individual variation and, anyway, pred should be keeping it down. (My platelets always slightly high, but not enough to get agitated about - see PMRpro's post.)

Yr GP sounds good - not reducing pred too fast. Enjoy the visit to yr daughter.

[Louisepenygraig in reply to BonnyQuine]

My ESR was in the 60s initially and then went right down into the teens after being on 15mg for a while but then when GP reduced dose to 10 it went up into the 40s again. On about 12 it was right down again so this is a big increase. I've always liked my GP but I was beginning to have second thoughts. He was the newest doctor in the practice when I first saw him but now he's the senior doctor (and very popular) he doesn't always seem to have so much time. When I rang him up about having a blood test he did come over rather as if he was determined I should come down but seeing the results changed his mind. I've always felt he trusts me to manage any medication sensibly.

[Louisepenygraig]

Thanks for everybody's help. I'm now taking 13mg and feeling quite a bit better. Still have some aches and pains but then I used to get spells of aches and pains before I had PMR especially if I eat stuff with yeast in, like bread. Sometimes it's difficult untangling things. I have some 2.5 mg tablets left so I may try dropping down to 12.5 then 12 if all goes well. My priority at the moment is to feel I can manage the journey to Jersey City in 2 weeks time, and to be able to get out and about a bit while I'm there.