Recently Diagnosed

[Tappo]

I have recently been diagnosed with PMR. 15 mg of prednisolone only brought marginal improvement. The dose has now been increased to 20 mg, which has brought more relief, but the pain is still not fully under control . has anyone else had an experience like this?

[Charlie1boy]

Very nearly. I was started on 20mg, then increased to 30mg to clear up all the accumulated inflammation. Stayed at 30mg for three weeks prior to starting the tapering process

[Tappo in reply to Charlie1boy]

How are you getting on with the tapering process?

[Charlie1boy in reply to Tappo]

I’m off prednisolone now for two years having been on it for seven and three quarter years!

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Many have, and although 15mg is most common starting dose, it doesn't work for everyone - nor does 20mg sometimes, but you do need to do your bit as well.

The Pred only manages the inflammation part your PMR, not zap it completely. have a look at this info post -

healthunlocked.com/pmrgcauk...

When you've settled in, a bit more info on your bio would be good.. thanks.

[Tappo in reply to DorsetLady]

Thank you. I will take a look

[sidra1968]

Yes, I had to go to 30 mg, and stayed there for 6 weeks. It does happen so don't worry too much about it.

[Tappo in reply to sidra1968]

Thanks very much

[PMRpro Ambassador]

How long have you been on pred? It took me 3 or 4 months before ALL the pain was minimal though that was at only 15 - but that 15mg had achieved a massive improvement in just 6 hours. They look for 70% quick improvement - but the improvement in pain can go on for a few months or need much more pred to get there quicker.

And have you adjusted your activity levels? Being on pred isn't a free pass to go back to normal activities and duties. I still can't carry a heavy-ish shopping back more than to transfer it from the car to a sack trolley so don't have to carry it in the house. Long walks or gardening are probably a no-no for a time at least - and long is relative, nothing like what you may have been used to before.

[Tappo in reply to PMRpro]

I have only been on it for just over two weeks. I think I need to adjust my expectations. Thank you.

[PMRpro Ambassador in reply to Tappo]

You probably do. A lot of doctors also think the relief is instant and to some extent and for some people it is - providing they are on enough pred for THEM. The difference for me in 6 hours was astounding but I had had PMR untreated for 5 years - anything was going to feel great.

But it will come - keep in touch with us if you have any questions.

[Tappo in reply to PMRpro]

Thank you - will do.

[Positive__]

👨‍🏫Hi Tappo, Wishing you luck. My advice is to hang in there it took 7 weeks on the higher 20mg dose for me to reach pain free.

I had a big improvement on 15mg Prednisolone in that the pain/stiffness in my shoulders/ neck and whole décolletage area dissappeared within about a week.

However the pain/stiffness in my buttocks thighs and legs got steadily worse over the next 2 weeks.

Luckily the Dr agreed to up the dose to 20mg.

Within a week or so of the increased dose I had a marked improvement in the buttocks/leg pain/stiffness.

The buttocks/leg pain/stiffness continued to improve to painfree after 3 weeks at 20mg.

I was left with pain/stiffness in my hands and fingers but weirdly only in the morning it had completely gone by the afternoon.

These pains did then go after around 6-7 weeks of being on the 20mg.

I was incredibly cautious about not overdoing activity.

Good luck and I hope things improve and you reach painfree. 🍹🍀

[Tappo in reply to Positive__]

That's so helpful - thank you.

[Daffodilia]

I started on 40 mg - now on 6

[Tappo in reply to Daffodilia]

Wow! Did you experience many side effects? I was diagnosed in France and they wanted me to have 60mg for five days and then stop them! Fortunately I had a retired GP friend with me who gave me the standard UK advice and I therefore started on 15MG, upping to 20mg after seeing my GP in the UK.

[Daffodilia in reply to Tappo]

I had an almost immediate relief from pain and stiffness. Moon face lasted a couple of days at 7 mg - gained a bit of weight as hungry - now getting nasty bruises as told by gp capillaries under skin are delicate - but this is after 6 years.

[marrabone]

Yes, l was prescribed 15mg in August and whilst it did provide a good 70% almost instant improvement it hadn't by any means eliminated the pain. About 3 weeks later my doctor upped it to 20 mg. I still have some pain in my right shoulder. I posted about this yesterday and have had some excellent advice. You might like to check the post.

[AtopicGuy]

It says on your Bio/Profile that you were diagnosed 18 days ago, you were on 15mg/day for "two weeks", meaning you've only been on 20mg/day for about 4 days. If your symptoms have improved by about 70% or more, you are fairly typical. Stick with it, and don't forget to rest, too.

Were your blood tests (CRP and/or ESR) abnormal? It's a good idea to keep track of those numbers.

[Tappo in reply to AtopicGuy]

Thank you that’s given me some hope. My ESR was normal, only CRP was raised. Bloods being repeated tomorrow.