Hello I am new here

I am a 68 year old lay and was diagnosed with PMR and GCA 4 weeks ago and started on 60mg a day Prednisolone, Omeprazole, Alendronic Acid, Vit D and aspirin. Have just reduced to 30mg Pred. a day. I feel much better. My care under the NHS has been excellent from on-the-ball GP who ordered blood tests then booked urgent Eye Unit appointment at local hospital followed by appointment with Consultant Rheumatologist - all within 5 days. The medication certainly takes its toll on the body but without it I dread to think what might have happened. Missing my leisure activities (including 2 walking groups) which have had to go on hold for a while but hopeful for the future. Rheumatologist says it might take 2 years to burn itself out. Have found the blogs on this community very helpful. Thank you.

[PMRpro Ambassador]

Welcome - and you lucky person having an on-the-ball GP!

"Rheumatologist says it might take 2 years to burn itself out" - hmm, I've been on 3 PMR/GCA forums for the last 7 years and have only come across a few people it burned out in in 2 years! In fairness, I suppose most of the people on the forums are the ones who tend to have problems but don't be disappointed if you need pred for longer than that - it won't be your fault! That 2 year figure is a very optimistic one.

[DorsetLady PMRGCAuk volunteer]

Hi,

Welcome from me too!

Hopefully you will soon be able to rejoin your walking groups, maybe you could now, so long as it's gentle walking and not too far!

As PMRpro says, don't get fixated by the '2 years' comment, or you may be disappointed. Although, I do think the bigger doses given in GCA cases make it more likely to burn out quicker than PMR (I have GCA), you have to remember it takes longer to get to zero from 60mg than 15mg providing it's a straightforward reduction.

You have got to 30mg quite quickly, but you do need to make sure that at each reduction you are okay before you go to the next. The reduction plan the Rheumy has given you may look achievable on paper, but we humans don't always conform! The lower you get, the bigger the percentage drop becomes (it is recommended that you don't drop more than 10% in any one go).

Take care, and good luck.

[piglette]

You seem to be doing well, as it is quite a shock to get the diagnosis. You are lucky having good medical support. One thing, have you had a Dexascan? This is recommended to check your bone density as this can be affected by steroids. I would not be happy taking Alendronic Acid if a bone scan had not shown it to be necessary I don't think.

Hope you get back to your walking group soon. However relax and pamper yourself.

[Hidden in reply to piglette]

Thanks for the good advice - I will ask my rheumatologist for a dexascan next time I see him.

[Bethy]

I agree with the others keep an open mind with regard to when pmr burns itself out. I was able to stop taking pred after three and a half years. But rest a assured you will get back to walking, maybe not as far as you have currently been, but after a year I went back to walking but shorter distances. Take good care andbe kind to yourself in the meantime x