After several weeks on 20mg Pred pain and stiffness still there. Awaiting appt with Rheumy.

[Tennisplayer82]

New to all this!

[DorsetLady PMRGCAuk volunteer]

As you are new to all this… perhaps you might like to read this- but have to ask are you making the fundamental [but quite usual] mistake that many newbies make, and thinking that just because you are on medication the problem is solved, and you can carry on life as normal.

Unfortunately it isn’t, and you can’t. Pred is only addressing part of your illness, not the illness itself.. so that still rumbling along - link does explain that.

But you may also be one of the unlucky ones, where the Pred is not enough…and if that’s the case, then the GP needs to know… it might be that or it may be a misdiagnosis.

healthunlocked.com/pmrgcauk...

Link is a bit long, but have a read, a think about what you are doing , or not doing, and then maybe read again.. then contact GP next week.

And please let us know how you get on.. or just ask anything yiu aren’t sure of.. why we are here…

As asked in previous post, a bit more info about you and your specific symptoms might help us to help you..

[PMRpro Ambassador]

We really don't know a lot about you to be able to offer much - but as DL says, have YOU done your part in getting symptoms under control?

Has your GP suggested trying 25mg? Many people actually need towards the top of the range of starting doses, 12,5 to 25mg, in order to get things sorted at the outset. Then they are able to taper to a lower dose. But it is worth trying that bit more - and resting! - to give your body a chance.

[Charlie1boy]

Not really much to add to what you’ve already been told. However, in my instance 20mg proved to be not enough, and my GP put me up to 30mg for three weeks, and that did get the inflammation under control.

Also, you do need to give yourself plenty of rest and tlc. Most of us learn that the hard way!!!

Good luck.

[Tennisplayer82]

So many thanks to all. Will get my act together and write some more soon. Just a bit demoralised by it all tbh. Very glad to be on this forum.

[DorsetLady PMRGCAuk volunteer in reply to Tennisplayer82]

Understandable that you are demoralised- unfortunately many doctors aren’t very good at giving all the facts, they often leave you thinking you are going to have miraculous results [and some do] - and if you don’t it’s your fault. It isn’t, it’s the nature of the beast and it can be difficult learning to manage it. But you will get there..

[Tennisplayer82 in reply to DorsetLady]

You are so kind to take the trouble to reply.. Greatly helped by your comments, just having a bad day!

[DorsetLady PMRGCAuk volunteer in reply to Tennisplayer82]

We all have them.. another reason to reach out to us -all been there and we understand.

[sidra1968 in reply to Tennisplayer82]

I also had to go to 30 mg, and my GP kept me there 6 weeks to really make sure it was controlled. So don't get too down yet, you just may be one of those people that need 30mg to start

[August7]

Hi, just to send you a big hug and a warm welcome. It’s daunting isn’t it, so much happening and trying to process all. You’re in the right place, feel supported and take one day at a time. The experts have so much knowledge to impart, some of us can only offer hugs and good wishes which I send to you in abundance ☺️

[alangg]

PMR hit me at at 57 and I felt as though I would be in a wheelchair by 60. I was making plans to give up work and trying to work out how we would manage. But the right dose of Pred worked and, by 60 I was back doing the physical work that I loved and the PMR had faded away. It will be tough but it will get better as long as you give the Pred and your body the chance to fight the inflammation.

[PlymouthAndy]

I struggled at 20mg until I split my dose (10mg in the morning & 10mg with dinner) - the very next day all the pain had gone! It may be worth trying - hope you find a solution very soon.

[Sandmason]

I was on 20mg for a month. I figured out in the first week that I had to split the dose, then I was ok. The pain got so bad at 2am I literally fainted onto the floor trying to get out of my recliner. I woke up hearing myself cry out in pain.

[spoof99]

I have been on 50/60 mg of Pred for 5 weeks now and while it no doubt saved my eyesite and got rid of actual pain in my arms and legs and pretty much every other pain in my body I still have this underlying fatigue and weakness in my legs....and that is concerning!

[PMRpro Ambassador in reply to spoof99]

The fatigue and, to some extent, the weakness are due to the serious system illness that GCA is. Pred doesn't have any effect on that - it just mops up the inflammation that causes some of the symptoms. Pred cures nothing - the actual disease process continues in the background. making you feel as if you have flu.