I've been taking pred for 5 months now following PMR diagnosis in March 2016. I am 50. Started on 15mg, went to 40 then 20 then 15 then 12.5 within 4 months and was fine. Dropped to 11mg but was in pain again and went up to 12mg. I am still stiff and sore in hips and shoulders. I have gained half a stone, which is a lot for me as I havalways been petite, and have a big neck and face which brings me down. Just recently I have been low and tearful and wiped out. I'm wondering if these are all side effects of pred or PMR symptoms. Unsure as to whether I should increase pred a bit more or if the pain will decrease if I try and stabilise at 12mg. I'm feeling really fed up. Trying to acclimatise to this condition by changing work and lifestyle but finding it a challenge at the moment.
I know the experts will be along with useful advice shortly. I think, however, that the last bit of your taper has been a bit too fast. How long have you been at 12? If it's been a few days and you aren't feeling better, or are getting worse, you probably should go up more, at the least to the place where you last felt comfortable or a bit higher - there is some sort of formula for that which I don't know but someone will.
As for the emotional rollercoaster - welcome to the club. There are days even now that my dose is really low someone only has to look at me sideways and I get all tearful. Ah well, this too shall pass. Eventually!
HI Kittilitter,
sorry to hear you are struggling at the moment we've all been there so take heart in the fact that things do get better. It's really not worth putting up with the pain and taking prednisolone is the main thing to help control your pain so don't reduce any further until you've stabilized.If anything I would increase 1mg every three days until your pain is under control then start your taper again .This method worked for me and saved months of tapering.Others have returned to starting dose then used the slow tapering method which has worked for them.It really is a balancing act to suit your individual needs but pain is definitely a case of no gain in this instance. Might be worth looking at cutting carbs and trying anti inflammatory foodstuffs to help with the weight gain associated with prednisolone and try to keep moving if you can. Even counting the steps you take each day tracking on your phone is a good motivational tool remember anything is better than nothing. It's also worth mentioning that calcium leaches from your bones ( spine in particular) whilst taking prednisolone,greatest loss is thought to be in the first six months so exercise and calcium rich foods can help here,also vitD3 supplement. If you take a calcium supplement then also look at vitk2 mk7 to help get the calcium into your bones rather than sitting in your arteries and organs. The biggest thing you can do is to take enough prednisolone to enable you to be pain fee enough to at least get walking every day. Good luck and hope you get control of your pain 🤗
The rule of thumb is to go back to the dose of pred where you last felt comfortable. If you have pain and the PMR has raised its ugly head it will not go away without more pred to reduce the inflammation. Just hanging in there on a lower dose hoping the pain will go away does not normally work and also makes life miserable anyway.
Steroids are a wonder drug, but unfortunately they do have side effects, and you do seem to have some of them. They are notorious for weight gain and moon faces. I cut out gluten and simple carbs and it did seem to work, I may have been lucky though. I find that I need to eat less than before diagnosis to maintain my current weight.
Hiya Mrs Litter.
You do seem to have reduced quite quickly. I started on 25mg at Christmas time and am now down to 11.25mg (alternating between 12.5 and 10mg daily). I feel that I am at a plateau at the moment. I've been on this dose for 30 days and will stay there until I feel comfortable. Listen to your body, it will tell you if you've come down too fast or not.
I am in the same boat with you. Overall weight gain, fat neck, bloated face, thick fat upper back, bloated stomach, etc. I dropped very gradually, under my doc. guidance, was as high as 40mg. also. I'm now down to 10mg., reduced 1mg. per week from 20mg., Pain returned but minimal, some stiffness back, but worsed don't see signs of the bad side-effects fading yet. Best to you !
If your pain has returned, even slightly, please consider slowing your taper. Look up the dead slow nearly stop method. It will help avoid a flull blown flare and the need to go up higher again.
Thanks everyone. I think I will go up to 13mg in the hope that I am a hen pain free and then start the DSNS method discussed. I had hoped to get to 10mg before starting it. Also, does the inflammation increase if I have over exerted myself? I lead a busy, active life but have tried to slow down. I'm wondering if tapering and not slowing down enough had lead to more pain? Side effects lead to wanting to reduce pred but it's backfired it seems. Thanks for advice and support. Much appreciated 😊
You need to give in to PMR as it does dictate what you can do and you can have repercussions from overdoing things. It does tend to bite back. The trouble is it is very easy to think you can carry on as if nothing has happened as the steroids have taken away the pain, unfortunately it does not really work like that. Start to pamper yourself, I never used to, but do now, massage, pedicure, relaxation in the garden. I have discovered PMR has made me allergic to housework so I have stopped doing it!
Hi, It sounds to me as if you tapered too fast. I started at 40mg. last November, then 30, 20, then slower. When I got down to 6mg. I still felt OK and honestly thought my PMR had burned out. So VERY slowly by halves I got down to 3.5. Then the stiffness, discomfort, in shoulders, arms and legs began again. Boy I was fooled--the PMR had NOT burned out, I still had it, darn. So now I am taking 5mg. and have felt better improved with some discomfort, especially.in the morning.. I will definitely increase more if necessary. I guess you could call it a flare?
In the beginning once I started the prednisone I NEVER had any discomfort, so I had wondered if it had burned out. I guess I'm no different than anyone else with PMR!
Please don't taper too fast. The small amt. you are on will give minimal side effects. good luck to you! Elinor
Hi your doses have been changed a lot, and very quickly, I was reduced from 30 to 25 after 2 weeks and have pain, so it might take you longer to reduce the prednisolone steadier but it might work better. There is a reducing table on health unlocked, taking it slow, I have written it out as a trial and will take 6 weeks to reduce what ever dose you are doing ie 0.5 mg 1mg etc.
yes go back up yo a dose that reduces your pain again and then start a reduction programme. Good luck, it harder to reduce from 15 downwards and should be a little at a time don't rush or you wil never get there.
Hi Kitty,
As the others have said, it sounds like you have reduced too much, too quickly. There's no point trying to rush it - it always bites you in the bum. I was just turned 51 when I got PMR, working full time, 4 kids, doing triathlons - so I hear you, I really do. It's REALLY hard to slow down and 'give in' but you simply have to or you will end up even sicker. Trust me, I know. After a dreadful fight I've finally stopped expecting to do everything - when I want it!
I get teary often and suffer depression - it's part of PMR AND pred - so who knows which is responsible at any given time.
You can try increasing your pred - it will help enormously - but you HAVE to slow down a bit too!
Thanks so much. I never imagined it would be so helpful to hear that others feel the same and have the same struggles as I do. Reading the forum, it seems a lot of us are used to being busy and coping with everything life throws at us and get completely floored by this condition. And it can be difficult when others struggle with us not being able to manage as we used to. I've never been told his well I look so much in my life! That makes me want to scream! Having s fat face does not mean I'm well! It's rubbish having PMR and you just have to get on with it. And although pred is awful, it's given me my life back so I need to be grateful. Thanks to all who responded. It really does help.
Just had to reply, I have PMR and my sister has Rheumatoid Arthritis....we both feel like you, when told...."you look well"...it really annoys us, my sister more....my answer now is...."It`s a pity I don`t feel like I look then! afraid the steroids sometimes give me ROID rage...I have become very direct at times!
​Good luck...
My reply when people say how well I look is 'it's the drugs!'.
Me too!
I just smile. But I can't write here what I'm saying in my head!
There is no point taking too low a dose of pred to manage your symptoms - you get all the downsides with none of the benefits to balance it out. The being wiped out, fatigue, is a part of the underlying cause of PMR, an autoimmune disorder.
Pacing is an essential part of managing PMR and there is a post on here about it:
The others have said the rest really - but beware, if you have symptoms left over on a current dose, they could build up to form a real flare. If they do start to get worse don't think they will go away eventually - that's how flares start.
Thanks Linda...I couldn't have said it better or agree with your post more !
I love it, going to use this reply every time !