Could you please advice me how long Pred takes to... - PMRGCAuk

PMRGCAuk

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Could you please advice me how long Pred takes to work?

Mike1964 profile image
35 Replies

Hi

Feel like I've been hit by a car, neck, shoulders, hips and thighs so very painful also terrible back spasms. Due to age and other issues rather suspect I may have PMR.

Am planning on begging my GP to prescribe me Pred to at least rule PMR in or out, how quickly have people found their symptoms improve after starting Pred?

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Mike1964 profile image
Mike1964
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35 Replies
PMRpro profile image
PMRproAmbassador

It all depends. The received wisdom is there should be a 70% global improvement within a week with a trial of 15mg.

rcpe.ac.uk/sites/default/fi...

However - as I say it all depends. The most recent guidelines say "the lowest effective dose in the range 12.5 - 25mg" should be used. If you have high disease activity, a lot of bursitis, a lot of accumulated inflammation, while the stiffness in particular may resolve in hours (for me, less than 6 hours on 15mg) some pain may take months to go away, persuading some doctors it isn't PMR.

All you can do is try 15-20mg and see what happens. If you are a large person, 20mg may be advisable.

Mike1964 profile image
Mike1964 in reply toPMRpro

Thank you. Sadly am a bit tubby think I might try 50! :-)

PMRpro profile image
PMRproAmbassador in reply toMike1964

No, NO! The whole point is that PMR typically responds to a moderate dose of pred (15-20). If you use a higher starting dose it muddies the waters and makes it less clear what you have. Lot of things respond well to 30mg and above - and so will PMR. But it is rarely necessary in PMR and you may assume that the response means it is PMR when it might not be. There is method in the madness ;-)

in reply toMike1964

😂I an a bit tubby too. I was put on 15mg and within a few hours I could feel my neck pain easing and coukd feel it was helping but nit pain free. Some people have had to increase with drs backing to get relief. Hope you get Dr to listen and if you start in 15mg that you feel some relief.

1Purplecrow profile image
1Purplecrow

Hi Mike, hope the pred gives you some relief. PMRPro gives great guidance, listen to Words of the wise🤓

Kind Regards, Jerri

I have GCA & PMR... when pred was prescribed it was for GCA. It worked within 12 hours! I was about 60% better. She increased by 20mgs and by next day I was myself. Then, (sorry to say... the shit hit the fan!) Hahahahahaha! Been a roller coaster ever since! .... but man, those first few days after Pred were heaven!

I could hardly get out of bed, pain in shoulders, arms, lower back etc and used to struggle up to go and cry in another room, not to upset my husband. I was put on 20 mgs of Prednisolone and within 18 hours felt a different person. Sadly, in 3 months, I have never got below 14.5 mgs and am struggling at 24 now, but that is another story. I go to see my consultant Rheumatologist end of April.

Hope you get medication and some relief.

Bridget

PMRpro profile image
PMRproAmbassador in reply to

Are you simply trying to do too much? You have to do your part too - the pred just manages the inflammation but the underlying autoimmune disorder leaves your muscles intolerant of acute exercise. You have to pace and adjust to what you can manage in your new normal.

healthunlocked.com/pmrgcauk......

I'd also say that trying to reduce to that level in under 3 months was a bit crazy fast. You stay at the starting dose for 4-6 weeks, reduce at most 2.5mg and stick there for about the same and then you can try 15mg. That's always supposing you managed those reductions and there is no guarantee of that.

Trying to reduce too fast, too soon and do too much will cause havoc. Frankly - if you were still at 15mg now that would have been good - but reducing too far always sets you back to a level that doctors panic about as being "steroid resistant".

in reply toPMRpro

No, I can assure you that I am not doing too much, I am in Tenerife, being pushed around in a wheelchair most of the time and certainly no acute exercise and I tend to nap when I need it.

Re the reduction, I did what the doctor suggested, as you do initially, I am now trying to reduce very gradually. Since finding PMRGCAuk and Healthunlocked I have read the advice on this site avidly and have taken on board all the advice and help there is.

As you say everyone responds and reacts differently, but hopefully we all get there in the end. I think the posting earlier about the study done at Yale should give us hope that research will be finding new ways to treat autoimmune conditions.

Bridget

SheffieldJane profile image
SheffieldJane in reply to

Tenerife and a bit of sun, while being wheeled about sounds like Heaven Bridget. Glad you’re with us.

HeronNS profile image
HeronNS

I felt some relief in hours (didn't dare to believe it) and oddly enough I am not clear about the interim hours, but on the third morning after starting pred I woke up, got up and was puttering around and suddenly realized I hadn't had to plan how to get out of bed. I was pain free! I'd started at 15.

SheffieldJane profile image
SheffieldJane

It varies Mike, I got complete relief and a full range of motion within 48 hours - the Pred. miracle. Others have waited a bit longer. You should expect at least 70% of relief within days if it is PMR.

alangg profile image
alangg

Like HeronNS above, I had almost complete relief in a few hours on 15mg. I'm now down to 9mg after 3 months. My GP said at the time of diagnosis, try the Pred at 15mg and if it doesn't make a difference, it's probably not PMR, there will be no harm done and she would look for a different diagnosis. If only the GP that I had seen 8 months previously had thought the same way!

yogabonnie profile image
yogabonnie

wow. down to 9 in 3 months is fast. Glad you have managed to do it and not had a flare. I am plodding along but now at 11 going slow method but this week staying there. Started at 15 on Nov 15... so 4 months to get to 11. Sat at 12.5 a very long time. But I think that is because I dropped from 15 to 12.5 in the first month. Happy to be feeling so good. And lucky. And Good luck to you Mike 1964!! keep us posted.

stellafmdm profile image
stellafmdm

Hi Mike1964, my Rheumy gave me and injection to test for PMR. It was like an almost instant miracle! no pain and back to normal living!!! I never did find out how much pred he gave me. It lasted about 6 weeks until I caught a bad cold and then everything came back with interest!

PMRpro profile image
PMRproAmbassador in reply tostellafmdm

Injections tend to only last about that long anyway. And it is not unusual for someone to be given a steroid shot for something else - and realise all those pesky pains have faded into the background. Cue diagnosis of PMR??????

Andymurph profile image
Andymurph

Hi Mike, I visited my GP last October and he told me he suspected PMR and ordered blood tests which confirmed inflammatory markers. I was put on 40mgs of Pred which I reduced to 20mgs after a week.

My symptoms had increasingly got worse over the previous months and prior to taking my first dose my head, neck and shoulders had felt like they were in a vice, I had trouble lifting my arms. It was painful to sit or stand for any length of time and my walking had been reduced to a shuffle.

I took my first dose at 6pm and literally within 3 hours I started to feel popping and cracking in my head and neck and a growing feeling of relief.

I returned to the surgery a week later in a state of euphoria, virtually pain free with my walking stick consigned to a cupboard. I'd been swimming, walking . I'd even stopped and rendered first aid at a road accident. In short, I'd got my life back.

Little did I know that prednisone comes with its own "Baggage" and I was only at the start of a journey.

I've currently tapered to 12 mg , which I now take early morning because of insomnia. This taper has included a couple of flares together with the usual fatigue and breathless spells others have encountered. I also had a fairly severe reaction to another drug (Alendronic Acid) that my GP prescribed to counter calcium loss.

Good luck.

SusanEleven profile image
SusanEleven

Before I took my first dose (10mg) of prednisone I needed a cane to walk and could barely move my arms enough to dress myself. Six hours after the prednisone I put the cane away. And all my limbs worked again.

PamOakes profile image
PamOakes

Hi there

I too had suffered for months in extreme pain and stiffness. Once diagnosed and started on 20mg of pref it was like a small miracle! Within 3 hours of first dose I could walk properly, bend down and generally move without crying!

I have followed the advice on here very carefully as these people are brilliant! (In spite of my doctor at times) And so far I have suffered no flares and, after 3 years, am now off the pred completely and have been for about 6 weeks.

Press for these tests to be done and get some answers, and follow all the guidance on here.......it's invaluable.

Good luck on your journey

Pam

Soraya_PMR profile image
Soraya_PMR in reply toPamOakes

Well done PamOakes re the zero pred :)

Go easy now!

Mike1964 profile image
Mike1964 in reply toPamOakes

Hi Pam

Thank you for taking the time to post that. You have given me hope, I can't believe how low I feel after such a short (But brutal) battle, was just seeing pain before me.

Kind regards

Mike

PMRpro profile image
PMRproAmbassador in reply toMike1964

No - once you get pred right, pain becomes liveable with. That is the point. But you aren't cured.

braininjurythepits profile image
braininjurythepits in reply toPamOakes

Excellent news that you are off pred completely now! May you continue to be PMR Free 🙂

Mike1964 profile image
Mike1964

Thank you all so much for your encouraging (And sometimes rather scary! words of advice) Am off to the GP shortly to cry and plead with her to try me on pref, I really cannot believe how painful and debilitating this is.

Janicep profile image
Janicep

My Initial symptoms also improved after about 12 hours and I felt so much better. I am on 15 msg now down from 20 after 3 months and do get a couple hours morning stiffness and then can function ok. Get tired if I do too much otherwise doing ok

Margerethe profile image
Margerethe

I found pred worked quickly. I was on 20mg but unacceptable side affects. Now on 10 mg look better. It's not a miracle cure but does help.getting the dosage right is important

Stracaks profile image
Stracaks in reply toMargerethe

I am curious as to your side effects. I’m having trouble figuring out a correct dose and not sure which symptoms are due to PR and which might be due to Prednisone or my taper. Thank you!

PMRpro profile image
PMRproAmbassador in reply toStracaks

There is nothing to figure out really: you take the result you get with your starting dose in about 4 weeks or so and then reduce slowly to find the lowest dose that gives the same result. When any symptoms increase after a reduction (and it must be a small reduction or you can't tell the PMR returning from possible steroid withdrawal pain) then you go back to the previous successful dose, wait a couple ofmonths and then try another tiny reduction.

If you tell us more about your experiences from the start someone will try to fathom it out for you - we've all been there!

Stracaks profile image
Stracaks in reply toPMRpro

My doctor started me on a 40 mg burst a month ago and told me to reduce by 10 mg every 7 days. I was just interested in your “unacceptable side effects,” but thanks anyway.

PMRpro profile image
PMRproAmbassador in reply toStracaks

Margerethe hasn't replied to you yet.

Stracaks profile image
Stracaks in reply toPMRpro

Oops, the "nothing to figure out" threw me. I thought Margarethe had responded with that. I'm looking forward to hearing how you are figuring this out, Margarethe. Thank you!

I started off on 10mg in September 2018, by the end of the day most of my pain had disappeared and I was bouncing off my chair! I reduced very slowly, taking two or three months to drop by 0.5mg, until I got to 7.5mg in November, and experienced my first flare. I’m managing by a gradually decreasing original dose, hoping to get back to 8mg by end of January. I very rarely have a tired day, side effects are tolerable and now, mostly mild, and I have as much energy as I did before PMR struck.

Prednisolone has been my saviour, who knows how long for, but if it keeps the debilitating pain away, I’m happy!

PMRpro profile image
PMRproAmbassador in reply tobraininjurythepits

Had you realised this post has been dormant for over 2 years?

braininjurythepits profile image
braininjurythepits in reply toPMRpro

Oooops no! It just appeared after I was scanning today’s posts.... I’ll check next time, and I’ll get off my iPad now and go and do something useful! 😂

PMRpro profile image
PMRproAmbassador in reply tobraininjurythepits

Being here is useful ;)

I don't know why it happens - every so often there are a few old posts that get resurrected but I'm reluctant to stop replies because occasionally someone finds them and it is relevant to their question and they can manage to post on it but can't fathom out how to do a new post.

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