I'm new here

[AvisF]

I have been diagnosed with probable PMR and wanted to say how useful it has been to read the posts of other people. So I have now joined the forum.

I am lucky in that the symptoms have eased quite dramatically after 2 weeks on 15mg of Prednisolone followed by 2 weeks at 12.5 mg I am now starting on 10mg and keeping my fingers crossed.

Thank you to all the contributors for giving me more insight into this illness that came as such a shock!

[Rokerman]

Avis - if you've seen the recent post 'Is this how it is' - you will see the words of wisdom from PMRPro, DorsetLady and others. There is (usually) a magical turnaround of symptoms, following the initial dose of Pred - in my own case, 15mg wasn't quite enough and I had to go up to 20mg in order to 'get my life back' before starting a reduction in doseage. You're not on a race to get to zero mg - the received wisdom on this site is to reduce not more than 10% at a time - otherwise you risk a 'flare' and you'll be back to square one!

Wishing you all the best

[AvisF in reply to Rokerman]

Thank you for your helpful comments, Rokerman.

I hadn't been expecting any replies but must say that receiving this gave me a good feeling. This is my first time 'posting 'on any forum so I don't necessarily have the correct terminology to hand!

However, it is great to feel empathy with others.

I will heed the advice to pace myself and accept it is a long haul ahead.

Best wishes

[PMRpro Ambassador in reply to AvisF]

No - no-one will be left with no reply here! Even if all you get is a hi and I can't answer your question but someone will ....

[Mrsd12f]

Hello Avis,

I'd echo Rokerman's comments. Just wanted to add that I was in your exact position, a year ago. The initial doses had a miraculous effect and I thought it would all be plain sailing. However, I did find the reduction from 12.5 to 10 a bit too much to cope with and had to go back to 11 and then reduce slowly, so don't beat yourself up if you can't manage that reduction, which is quite a hefty one!

Slow but steady and pacing have been the watchwords for me, so don't be tempted to do too much at a time. Good luck!

[AvisF in reply to Mrsd12f]

Thanks for your comments, Mrsd.

I am grateful for your advice and will take care to pace myself.

Best wishes

[HeronNS]

My doctor neglected to tell me that pred wasn't a cure, that it only alleviated the symptoms. The inflammation is reduced, but whatever is causing the inflammation is still there, and it will almost certainly take a couple of years (often longer) to burn out. I innocently believed I'd be off pred in three months! It was the forums which straightened me out.

I suggest that after only four weeks it's too soon to be attempting to reduce to 10 mg, especially in a large drop of 2.5. If after a few days you start to feel return of pain (hopefully you won't) please don't try to wait it out. Go back to 12.5, where you've been fine, and after you are sure the symptoms are under control again, try dropping by only 1 mg. Lots more suggestions regarding tapering on this forum!

[AvisF in reply to HeronNS]

Thank you for sharing your thoughts, HeronNS.

It is worth being reminded that it is the symptoms not the cause that is being treated. I am going to pace myself and remember to rest more than I did.

Best wishes