Newly Diagnosed

[JJP61]

Hi there. I'm newly diagnosed with PMR. Just 3 days into taking steroids. Still in a lot of pain. I'm just posting for some advice/foresight as I'm a little anxious over the diagnosis. How quickly will the pain subside, please, and what can I expect from hereon? Thanks to anyone who can help.

[Twopies]

it took me 3 days before I was able to get out of bed without help, ditto for the toilet and dressing myself. It did get better—a lot—but took time. 2 months after starting pred I saw a rheumy for a consult, still had very sore arm. He said, “oh, you’ve got it bad then…”. Eventually my arm got better too. Best wishes to you.

[piglette]

I could hardly get out of bed before taking steroids. They brought me back into the land of the living fairly quickly, but I did improve a bit more after that. Ou should improve at least 70%. The thing is PMR is life changing, all the steroids do is help the pain, they don’t cure you. You need to rest, rest, rest you cannot just go back to how you were before sadly.

[NewPMR]

I’m sure the pro advisors will respond to you shortly, I think they will need a little more information to assist you. Where is your pain, what amount of pred have you been given and what tapering plan have you been advised to do? If you have been prescribed the right amount, I would have hoped you would have had more relief by now. All the best

[PMRpro Ambassador]

Hi and welcome.

That is a bit of a how long is a piece of string question! I had immense relief from the stiffness and pain in under 6 hours - went from crawling up the stairs on hands and knees and stomping down like a toddler to going down and back up with a full mug in my hand. I'd had it undiagnosed for 5 years and only given 15mg - but that was enough for me. But it was 3 or 4 months before all the pain had reduced, hips, hands and feet took longest.

The speed of relief varies greatly from patient to patient - from hours to days and sometimes even weeks. A study in Italy found that 75% of patients got relief in up to a month using 12.5mg/day. Results at that low dose were better in small women than in larger men. It does depends to some extent on the starting dose - and unless the starting dose is enough, you won't get the dramatic response I was lucky to have and which some doctors think is essential for the diagnosis. A good doctor would increase the dose to 20mg if you don't get much of a result. The 2015 recommendations give a starting dose range of 12.5 to 25mg/day - you may need more.

Have you had any relief? Have you been resting and behaving generally like a poorly person - because you do need to give your body and pred a chance. If you do feel better - DON'T rush about trying to do the things that you have been unable to do! Pred has cured nothing, it relieves the inflammation that causes the symptoms and you have to play your part.

I could write for a week on what happens from here on but that would be overload for you - it will all come in the next couple of days with others replying to you and DorsetLady has a really good introductory post but she is on her holidays, fast asleep in New Zealand so you will have to wait for her to wake up!

[JJP61 in reply to PMRpro]

Thank you! That is very helpful. The pain is predominantly in my shoulders and arms with a lot of stiffness in hips and one knee. I get out of the chair like an 85 year old! (I’m 63!). I have started on 15mg of pred and yes, I feel there is a slight improvement. Getting sleep with the pain is my biggest problem though. I can’t remember when I last slept well.

Until I read some of these posts I had no idea of the enormity of this diagnosis and I think that’s what’s made me anxious. I thought that 3 months of pills and I’d be back to playing golf 3/4 times a week and crawling on the floor with my grandchildren. Now I’m not so sure.

However, I’m quickly recognising that resting plays a big part so need to switch off any guilt I have about sitting on the sofa watching tv/reading.

Thanks to you all for your time in replying. It’s a comfort.

[PMRpro Ambassador in reply to JJP61]

No - 3 months of pills DOESN'T cut it. But you should feel a lot better in 3 months, Unfortunately pred doesn't help sleep either so that may be a bit mixed for a while. Everyone copes with it differently - but I don't think there is any point being anxious. Someone asked the other day how you cope with chronic illness - you just get on with it I think, adjust, adapt what you can and some things you have to give up for a while. I skied with PMR, with and without pred but there the hard work is done - lifts were what made it possible to have rests between short runs!! There are golf players on the forum as well as people who do other sports. Some aren't prepared to accommodate, others do.

Sports involving a lot of shoulder activity may be difficult - my shoulders weren't badly affected, hips were very stiff but I found the ski movement loosened them up. Swimming was not an option but aquafit in a warm pool was - and left me able to then do a Pilates or Iyengha yoga class afterwards - heavily adapted of course! And they helped a lot.

Will you be able to play golf? Crawl on the floor with the rugrats? Don't know, but don't give up hope!!

[byebyebicycle in reply to PMRpro]

Hope it's not inappropriate to ask but why was "Swimming was not an option but aquafit in a warm pool was". I'm not really a swimmer but have found swimming in moderation to be an excellent exercise since being afflicted with PMR. I also do aquavit exercises in a normal pool - you just have to keep moving 😁.

[PMRpro Ambassador in reply to byebyebicycle]

My neck doesn't accept me doing any front strokes - and the pools were very iffy about people doing backstrokes!! If I got into a cool pool I just seized up so it wasn't worth trying. You have to remember I was doing them with untreated PMR, I was already very stiff and in pain getting into the pool, cool water just made it worse and I could barely move.

[byebyebicycle in reply to PMRpro]

Thanks. That puts your comment into context. I have found that I am also reluctant to doing backstroke because of busy pools and not wanting to cause a problem to others. This is because I see inconsiderate's, usually male, regularly doing it. But in general I would recommend swimming to other sufferers - it is gentle and not taxing on joints and muscles. And with the right instruction aqua exercises are equally good and it's easier to judge how much is too much.

[PMRpro Ambassador in reply to byebyebicycle]

It also depends if your PMR involves your shoulders a lot - that can limit swimming strokes too.

[byebyebicycle in reply to PMRpro]

True, but I have found with swimming you can find a balance with effort on shoulders and thighs to be comfortable. I mostly have problems with legs/thighs so put more effort with my shoulders and then they complain ...

[DorsetLady PMRGCAuk volunteer in reply to JJP61]

All things in moderation … just have to adjust life, but not give up on it…

[Fatsiajaponica]

Hi Jacquiep, and welcome to this supportive and informative place for the PMR/GCA club. I'm 8 months in having been quite disabled by this thing but lucky to have had a rapid response to 20mgs of pred. We are all different physiologically so your PMR may 'burn out' within 1-2years but many take much longer. The most important piece of advice I have been given (aside from the don't go back to normal activity, respect the illness) was about the tapering down from the meds carefully and slowly to avoid a flare of symptoms and back to an increase of meds. You need to really take care of yourself and will be back playing golf when the inflammation is under control but maybe 9 holes to begin with and shorter plays with the grandchildren. You are not about to lose everything.

Can I ask if you have been prescribed anything else to protect bones? Vid D and Calcium? There are other meds to offset the side effects of pred as well. As PMRpro says DL will be along with some more detailed information for you. Let us know how you are getting on. Best Wishes.

[Excelsior80]

I was lucky enough to go from shuffling round in pain and hardly able to lift arms - got button up shirts, couldnt put anything over my head - I was thinking of getting a frame for the toilet to help get up .... to more or less normal in hours on 15 mg pred. And apart from fatigue its been fine since, 7 months now and reduced to 6mg. Been on holiday, look after grandson at times, I just need to make sure I rest enough between doing things..... On side effects of steroids, my blood glucose is higher and I just had a dexa scan for bones to see if i need anything more than extra calcium/vit d and weight bearing exercise. Reluctant to take anything extra unless I definitely need to.

[Dumdeedum]

Hi I was diagnosed 4 weeks ago after about 4 weeks of symptoms. Initially my diagnosis hit me like a sledge hammer as I’m never ill! Prior to diagnosis I was a fit, healthy 64yr old who regularly dinghy sailed, paddle boarded & did long walks of 10-15 miles with no trouble. Started on 20mg Pred and following day after 1st dose was like a miracle as I was able to get out of bed without feeling like I needed a crane! Generally (unless I’ve not slept well) I now feel very well & have done 3 big hill walks of 6-8 miles each over Christmas which I’m very pleased with. The first week or so my sleep was very variable but that has now settled. I have always been a good sleeper and don’t do well on not enough sleep so I’m very grateful it has improved. This forum is amazing and many thanks to everyone for all their informative & useful posts. I’ve got my head around my PMR now and hopefully a return to life before it will come but as lots of people have already said it’s a very individual condition & I must keep reminding myself to not to try to “run before I can walk”!

[PMRpro Ambassador in reply to Dumdeedum]

Beware though - pred gives you wings. Or so you think. But it is a false friend and it is all too easy to overdo things without realising. Once you have done so and it hits like a ton of bricks - it may be VERY hard to recover. Above all, soft tissue, muscles tendons and ligaments are very easy to damage. Believe us - we have been there.

[Dumdeedum in reply to PMRpro]

Thankyou for your wise words. I just so don’t want to be an “ill” person!

[PMRpro Ambassador in reply to Dumdeedum]

Nor do I!!! Moderation means you won't be an "ill" person but overdoing it very possibly will.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Others have replied to immediate question, but have.a.look at this for more info - it’s a bit lengthy so please keep ro hand so you can refer to it at leisure -and in future -,when it will make more sense..

healthunlocked.com/pmrgcauk...

[JJP61]

Thank you all so much for your incredibly helpful advice and information. I will now spend some time reading and digesting it all. Much appreciated!

[Angelsmummy]

Rest,rest,rest,or you will take longer ,much longer to get better.The Pred on high doses makes you think you are Wonder Woman,and that you are NOT.I think I remember somebody on here a while back saying to think of what you used to be like,halve it and then a bit less.Life is still good but resting has to become part of the NEW YOU now.Your body will let you know if you have done too much I wish you the very best of luck J,keep in touch with the forum,so much help on here,no matter what the problem is. Happy New Year!😜🍾xx

[syashaw]

Hi Jacqui. Hopefully you will get some improvement from the steroids very quickly. I was diagnosed 15 months ago and after less than a week on 15mg Prednisolone, I felt so much better. I don't know how supportive your GP is, but don't be afraid to keep pestering them for advice and monitoring, but don't take everything they say without questioning. My GP, like many others mentioned on this forum, seems to accept treatment may last up to 18 months and then try to rush you off steroids in quite big steps. The advice on this forum seems much more consistent and sensible - take it very slowly.Good luck with your progress. Expect some ups and downs and ask questions. This site has been a huge help to me. I hope you find it equally useful.

[CocoaChanel]

If you would like a quick summary of PMR you could read this:

healthunlocked.com/pmrgcauk...

[Rose53]

Hi Jackie, so sorry to hear you have PMR I was diagnosed with GCA last May I was put on 40mg of Prednisone, tapering very slowly you should really start to improve but you must rest. I have recently come of pred I still get tired easily if I do to much listen to you body if it says rest don't feel guilty you are ill. It will improve. Take care lyn

[Angelsmummy in reply to Rose53]

Wow,you were off the Pred quick Rose.,Lucky you eh?So pleased for you,a success story.Keep well.xx💐😜

[DorsetLady PMRGCAuk volunteer in reply to Rose53]

That’s very quick - hope it remains in remission.. and would say your adrenals are still struggling so do be aware of that. Any unexpected stress could be difficult -do you still have some Pred in cupboard in case of emergencies?

[Angelsmummy in reply to DorsetLady]

Just jumping onto this DL hope you don’t mind?I am on 4 1/2 nearly4 th week of the seven.Lots of stress,chronic fatigue,Rheumy did bloods,all good,CRP 4 ESR 7 but had a short synacthen test today at hospital.Now I am on the4 1/2 do I still stick to the 1/ 2 mg every 7 weeks or should I drop dose to1/4 reduction every 7 weeks?Just a thought.xx😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

It’s probably easier to stick to the 1/2mg drop (for practicality reasons re cutting tabs) - but you can always extend the 7weeks to 14 weeks by just repeating each week. What is suggested anyway in my ultra slow taper. If you have excel copy of tapers it’s on separate page..

[Angelsmummy in reply to DorsetLady]

Many thanks DL.Will carry on as I am for now then and just see how I go.Xx😜

[Rose53 in reply to DorsetLady]

Yes I do thankfully, my last blood test for my inflammation levels was good. But I do worry I now have type 2 diabetes because of the steroids and have also been unwell over xmas something unrelated to GCA thank goodness. I am due another blood test in February but sooner if I get any symptoms but I do get so tired.

[DorsetLady PMRGCAuk volunteer in reply to Rose53]

Good to hear you have a stash of Pred -and adrenals may take up to a year to be back to 100% after finishing Pred. Although tiredness could also be T2 diabetes.. or whatever you had over Christmas-so do keep your eye on the ball..

[Woollyback1]

Hi Jacquie

I’m not an expert by any means and I never got to the stage of steroids but I started on Aloe Vera juice in a morning and slowly but surely my blood count got lower and after about nine months there wasn’t any sign of inflammation. Not saying it works for everyone not even sure if it cured me but it’s worth a try. I sympathise with you because it’s a horrible thing and I wish you all the best and good luck too. I also started wearing a Trionz magnet bracelet.

[Limpylissy in reply to Woollyback1]

Gosh well done Woollyback1 for avoiding steroids xxx I tried so hard to do that but once you have started it is hard to go back and my symptoms were so bad that I couldn’t work and keep up with the house. My biggest fear is that the side effects of pred will be more permanent than the PMR would have been. So much love to you for managing it ❤️❤️❤️❤️

[DorsetLady PMRGCAuk volunteer in reply to Limpylissy]

My biggest fear is that the side effects of pred will be more permanent than the PMR would have been

Why? And in most cases highly unlikely.. untreated inflammation can do a great deal of damage…

[Woollyback1 in reply to Limpylissy]

It wasn’t on purpose my GP didn’t want me to start steroids till I’d seen a Specialist but I had to wait that long that I only had a steroid injection. My second Consultation was with another Specialist and they ask if I wanted to start steroids but had started to feel like things were possibly 🤞changing. And I honestly thought I had PMR for life, I feel so lucky and I am very thankful that I feel how I do now. Wishing you well, rest much and be lucky 🍀

[PMRpro Ambassador in reply to Limpylissy]

After over 20 years of PMR and some 16 of pred - I have no identifiable long term effects of pred. Had I NOT had pred I would have been in a wheelchair - and possibly not here, Constant pain and disability over years when doctors are saying they can't find anything wrong can make suicide look very reasonable ...

[PMRpro Ambassador in reply to Limpylissy]

PMR is also not the illness - it is the name given to a particular set of symptoms and there is a range of underlying causes. Even ours, caused by an autoimmune disorder, can last varying times, Nine months is unusual but not impossible and probably 95% will recover in up to 10 years, half by 6 years. But a small proportion of us have a version that is for life - and life in the PMR wing is pretty uncomfortable. You can't tell in advance which point on the spectrum is allocated to you but you do know that pred stops it hurting so much. I had had 5 years before pred - and I can remember that first day of pred as if it were yesterday, the relief was indescribable.

[Tappo]

Hi, I was diagnosed last August/September and commenced on 15mg. I did respond to the steroids but very slowly. After a couple of weeks my GP increased the dose to 20mg, which gave me the 75% improvement, but again, not instant. I have never been totally pain free, but can certainly sleep 😴 well now (with the very occasional steroid induced wakefulness). Pain has improved further as the weeks have rolled on and some days I can forget I have PMR. I started tapering my steroids a couple of months ago and am taking it very carefully. I am about to reduce this week to 12.5mg. So far so good and the help on this forum has been amazing. Don’t despair, there is life with PMR. It is very early days yet 🥰.