What can I expect?

[Mollbhan]

Hello, new boy here, 70 yrs old, fit, suddenly floored with PMR, woke up a couple of weeks back with a sore right arm, next day sore left arm then sore everything. Blood tests indicated PMR, doc put me on 15mg pred, pattern now is wake up about 5am feeling absolutely rotten, cannot move in bed, during the course of the day things improve until bedtime. The whole process is then repeated. Is this the usual pattern and are their any effective painkillers? Thanks.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Ordinary painkillers don’t touch PMR - Pred is the only thing to cut the mustard.

Not sure exactly how long you’ve been on Pred, but if two weeks as you imply - you should be feeling a better by now...at least 70% improvement.

Either your dose is not quite enough; you’re not getting full benefit from dose (some don’t); you are trying to do too much - but that doesn't sound likely, or it’s not PMR.

I guess you’re taking Pred in morning, we do sometimes suggest either taking it at night or splitting dose for some patients , but due to the fact that you’ve only just started I think you need to speak to doctor again - as it doesn't sound quite enough to me.

In the meanwhile have a read of this - healthunlocked.com/pmrgcauk...

[Pmrmolly2018 in reply to DorsetLady]

I started on 15mg upped after two weeks to 20. Two years now..several flares later and am steady on 10. Do always split dose 5/5 now evening and early morning...get cover for most of day. Evenings still rocky...but manageable. Good luck.

[Maisiek]

Hi, sorry you’ve joined this exclusive club ; glad you’ve found this helpline as it’s been a lifeline for me. Kate Gilbert’s book is worth getting; Polymyalgia Rheumatica and GCA: a survival guide, as GPs generally know so little about PMR . Good luck on your journey .

[PMRpro Ambassador]

Hi and welcome.

Every morning at about 4-4,30am a new batch of the inflammatory substances that lead to the inflammation that is the cause of the symptoms is shed in the body. By 5am you start to feel it. The sooner after that you take your pred, the less work it has to do and the sooner you feel better. Most people do find they improve once they get going but taking your pred either when you wake and then settling down for another couple of hours or at night before bed will improve your mornings.

The antiinflammatory effect of pred lasts 12-36 hours depending on the person. Some of us manage the full 24 hours and mornings are still OK from yesterday's dose. Other find splitting the dose so you take the smaller part later in the day will extend the effect to the morning but you have to try it to find out. Like DL though I think you should ask your doctor if you can try 20mg for a week to see if the result is better - you won't be able to proceed to the next stage of tapering comfortably unless all the existing inflammation is well cleared out to start with,

[yogabonnie]

I would suggest definitely talking to doc and starting at 20. Get all the inflammation away and then you can fairly quickly go down to 15 then 12.5 and then the slow slow taper. What to expect? Everyone is different. Exhaustion was my big bugaboo.. but I managed it and after 2.5 years got down to 2mg then wanted to rush further and had a flare, so I am at 7mg. now and going to take it slowly. I do less, but still walk every day and bike and do yoga. Watch the weight gain right away... dont wait until you have gained from the prednisone and have to lose it. Start right in with no salt lots of water and cut out the sugar! (if you can!) (easier said than done.) But prednisone can induce diabetes so watch it. Skin will get thin and bruise, hair might go, but will come back! Also listen to your body. And find the positive..it helps. sometimes I found it to be quite nice to say OH I would love to but this PMR....... haha. although Covid no socializing has done it for me now. Do what you can. Dont overdo. We are, although I am sure it doesnt seem like that right now, lucky that it is THIS autoimmune disease... there are plenty out there that are much worse! Keep on this forum. It REALLY helps!!! All the best to YOU!

[GlynisE in reply to yogabonnie]

Fatigue is mine too. I have no side effects from pred. I was getting bad neck and shoulder pain in thr mornings so a couple of days ago I started taking 1.25 before sleep and then 5mg after breakfast and that seems to have helped a lot.

My rheumatologist said that they were happy with anything under 7.5 on a long term basis

[piglette]

It sounds that you are on too low a dose of pred or you do not have PMR. I could hardly move when diagnosed, after taking the pred, within twenty four hours, I was back in the land of the living, it was like a miracle.

[Cairocat in reply to piglette]

I had exactly the same “miracle”. Now, almost two years later I have managed to reduce to 1.5 mg and...still have aches and pains, but nothing like the pre-pred days. I agre with all of you experts that share your experiences..go back and ask for more.

[GlynisE in reply to piglette]

Me too.

[EscapedtoWales in reply to piglette]

Me too - it was amazing feeling the pain lift away.

[SheffieldJane]

I was started on 20 mgs and obtained better relief than you are experiencing. I think you should talk to your doctor about a temporary increase. It doesn’t have to be this bad. Painkillers don’t do much but more Pred really does.

[Daffodilia]

I get better during day and then stiff and painful through night until take pred in morning

[GlynisE in reply to Daffodilia]

Try splitting your dose.

[Lyndalou62]

Thanks for your reply- its good to know that we are not alone in all this. Its comforting that we have lovely people on this site who care enough to take the time to try to help. Take care 🙂