Many thanks

[Trish21]

As always many thanks for all your responses. I must admit receiving the letter was a bit of a curved ball and frankly worrying. I'm trying to get an appointment with my gp but as we know it's not an easy thing. I need some answers so I know how to deal.

[Daisychain12]

Darling what's the latest? Did you get an appointment? How are you coping. .. .xxxxx

[Trish21 in reply to Daisychain12]

Hi, well I have been to see gp today and he explained that chronic small vessel disease can be found in most of us of a certain age! It's furring of the small veins rather like that in the heart due to high cholesterol. So guess what, he wants me to come off pred so he can put me on cholesterol reducing medication!!! Well that's not going to happen. I have got to go back in 2 weeks so by that time I assume my pmr symptoms will be back and maybe that will convince this gp that I do really have the condition. I am not keen on taking statins and due to a slow heart rate cannot take betablockers so I am going to insist gp gives me 2 months to try and reduce cholesterol by diet and lifestyle change. 6.9 cholesterol reading at the moment. So all in all yet another challenge, bring it on.

[piglette in reply to Trish21]

Why does he want you off pred?

[Trish21 in reply to piglette]

Your guess is as good as mine. I just want to be as healthy as I can be and not in pain. This gp is a different gp to the original one I saw so I need to be assertive and fight for the best treatment for me.

[piglette in reply to Trish21]

Go for it, don’t let them win and leave you in pain.

[Trish21 in reply to piglette]

Gp wants me to reduce by 5mg every 4 days until down to 0, everything I have read tells me this is too fast so will do my own thing

[piglette in reply to Trish21]

It sounds pretty fast to me. I assume he hopes you will be off pred by the time you go back to see him. I must admit I could not even contemplate reducing that fast.

[Trish21 in reply to piglette]

I'm taking control of this situation, I understand that this is a long term condition which is many faceted and not fully understood by either sufferers or the medical profession and as such the parts of it I can control I'm damn well going to.

[PMRpro Ambassador in reply to Trish21]

Well THAT won't work if it is PMR - it is how you use pred in many other things, but they are short-term illnesses, PMR/GCA is a chronic one, just like RA. In RA they use pred when the patient has a flare, short term, often like that, until the DMARD they are on takes over again. There is no DMARD for PMR (even if some would like methotrexate to work) - pred is our DMARD. Ask him if he would tell an RA patient to taper off their medication like that.

And anyway - lots of people take both pred and a statin. I don't and wouldn't but there isn't a contraindication.

[Trish21 in reply to PMRpro]

Thanks for your response. I'm finding it a bit hard going at the moment, I am pain free on 15mg of pred and am happy to try to drop to 12.5mg to see how I feel. I'm very happy to make lifestyle changes to try and reduce cholesterol by diet and exercise (exhaustion permitting) I really don't want to put more chemicals into my body than I need to.