Any advice for newly affected with Polymyalgia Rheumatica

[MikeVanBC]

Hi Folks, I was stuck on my back with legs up like a beached crab for weeks. Finally diagnosed and walking thanks to 15mg of prednisone, but still very painful across shoulders and arms. Does anyone have any experience with upping the dose to 20mg, given I’m a guy weighing 190 lbs and am 6’ tall (if and when I can ever stand straight again)!?

[DorsetLady PMRGCAuk volunteer]

Hi,

and welcome, sounds as if you may need more, but not something you should be doing without medical agreement.

Couple of questions, how long have you been on 15mg? For some people it takes a little longer to mop up all the built up Inflammation- for others it’s almost instantaneous relief. But if it’s longer than 2-3 weeks then you need to speak to doctor.

Have you tried to return to your old normal life thinking it’s all sorted? No can do, you have a serious systemic illness which is not cured, only the inflammation caused by that illness is being controlled by the steroids….so you need to take things a bit easier, certainly initially.

Have a look through this to give you a better idea -

healthunlocked.com/pmrgcauk...

If you still have concerns that 15mg is not enough for you (and it may not be, as you say you’re a strapping lad) then please contact your doctor and talk it through….and keep us informed please.

Good luck.

[PMRpro Ambassador]

If 15mg hasn't given 70%+ relief - your doctor really should try a bit more. The 2015 Recommendations say "the lowest effective dose in the range 12.5 to 25mg".

The starting dose used to be generally 30mg - then they got all scared of using too much pred but it really does appear to many that the old 30mg probably was better in the longer term than the latest concept of lower starting doses and speedy reductions.

[piglette]

The recommended starting dose is between 12.5mg and 25mg. It is surprising you were not given 20mg based on your height and build.

[123-go]

We would have made a good double act: you like a beached crab and me like a beetle on its back! You WILL stand up straight again but remember that your muscles and surrounding tissues are inflamed. So, no weightlifting, no bricklaying, no football or half marathons and give your body a chance to reset as the steroids (correct dose) start doing their job. This will take as long as it takes. Walking is good but start off with short distances and gradually increase remembering that you have to do the return journey. Stretches are good but don't overstretch. Balance exercises will help. Lots of info online. If you can find a physio who is knowledgable in PMR in my experience it's worth it.

Good luck.🤞🏼

[MikeVanBC in reply to 123-go]

Thanks very much 123 😘

[MikeVanBC]

Thanks very much for all of your kind and thoughtful replies. This is my 25th day on prednisone. Things have improved to the degree that I can finally get a decent night’s sleep, but I wake up to excruciating pain across my shoulders and can only raise one arm. I am however now able to walk for a couple of miles most days, at a reasonable pace, without the need for the cane I bought when I thought I was over and done for.

I’ve been resistant to increasing my prednisone dose above 15mg even tho my Doc suggested boosting it a bit, simply because I mistakenly assumed I’d bounce back more quickly and am not a big fan of prescription drugs. I have just today taken an extra 5mg so we shall see if 20mg makes a difference.

Any other thoughts, ideas and personal experiences are very much welcome and appreciated.

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

If you have a look at the FAQs-linked -you see other peoples PMR journeys as well as advice on exercise etc - just have a browse through - healthunlocked.com/pmrgcauk...

Probably best to ask specific questions if you have issues…

[MikeVanBC in reply to DorsetLady]

Thanks very much for all your sage advice Dorset Lady! You certainly have a lot of valuable experience and knowledge on this affliction.

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

Too much experience maybe😳 …but am through the other end of it now so hopefully that’s gives you hope you can as well.

[MikeVanBC in reply to DorsetLady]

How long was your ride?

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

I had GCA not PMR -and best part of 6 years, but that was because it took 18 months to get a correct diagnosis -then just over 4 years on Pred until remission. Been free for almost 6 years.

[MikeVanBC in reply to DorsetLady]

Very interesting. It does seem difficult to get a firm diagnosis. My health professionals believe it’s PMR, and certainly all symptoms align with that diagnosis, but there appears to be no test that provides 100% certainty.

The good news is that the proscribed treatment has helped substantially, although not to the extent that I’m free from pain. While some suggest a higher pred dose may solve that, others appear to report they are never free of discomfort regardless of their dose.

Given this forum is where I’ve first seen references to tracking total pred over time, I’m trying to find the sweet spot to walk the line. But it does appear I’m increasing my dose to try and get there, instead of starting out above it and reducing down to find it.

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

No, there is no specific test for PMR…it’s more a case of eliminating other diseases for which there are more reliable tests. Then it’s down to symptoms and how the patient responds to the steroids….at least an 70% improvement in symptoms is deemed acceptable. …and most achieve that, lucky ones 100% improvement.

But like most long term illnesses it a matter managing the symptoms as best you can to give a reasonable quality of life - and to be honest, frustrating as it might be, PMR is not as debilitating as lots of illnesses.

[MikeVanBC in reply to DorsetLady]

Thanks 🙏 I appreciate your positive outlook. Is your middle name Pollyanna? 😊

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

Nope….hang around long enough and you’ll find out! But I am a Viking Goddess -aka Freyja

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to MikeVanBC]

PET-CT can make an almost 100% confirmation of PMR by showing the very typical area of inflammation in soft tissues around the joints. But it must be done before pred is started. And if a biopsy is positive - 100% confirmation it is GCA, But a negative biopsy doesn't mean it ISN'T GCA.

Like almost all sutoimmune disorders it is symptom management - but at least they burn out for 90% of cases. Most a/i disorders don't.

[MikeVanBC in reply to PMRpro]

Thanks Pro. I did have a hip XRay and MRI scan pre-prednisone when I thought this may have been a pinched nerve there or in my lower back, but the radiologist made no comment about significant inflammation.

Anyway, I’ve upped to 20mg of pred for the 2nd day and will see if that reduces pain further. Although I like the bucket example that Cranberry shared, in theory the fact that there was some significant improvement with 15mg clearing up most leg issues leads me to hope I’m now close to the right dose zone.

[PMRpro Ambassador in reply to MikeVanBC]

I originated the bucket theory - a dripping tap fills a bucket eventually unless you remove more of the water with a scoop than the tap is letting in. If it is dripping fast you might need a beer mug, if it is dripping slowly - a coffee cup will be enough ...

[PMR2011 in reply to MikeVanBC]

As Dorset Lady says. You will want to arm yourself with knowledge as PMR has a mind of it’s own! We have all found that once symptoms are controlled it is the slow and steady approach to Pred tapering that goes smoother. There is also lots of info on the site on managing Pred side effects to minimize them. Sorry you’re on the journey, but you’ve come to the right place for support, information and advice!

[Daffodilia]

I started on 40 mg - weighed 11.5 stone and only 5’3’ so May be you need more pred - now on 6 mg after 3.5 years

[cranberryt]

A helpful way of understanding PMR and Prednisone… Predisone is the bucket. The inflammation is the water. As long as the bucket can hold all the inflammation being produced daily, you shouldn’t have much pain. If you start with a 15mg bucket, but your body is producing 20mg of inflammation, your bucket overfills and the pain returns. You need to start with a bucket big enough to control all the inflammation. Even a bucket that is only slightly too small will allow a tiny bit of inflammation to overflow and that overflow will continue to accumulate, leaving you feeling worse and worse. The idea is to start with a big enough bucket and then slowly reduce the size of the bucket until either 1) the bucket gets too small and pain returns - increase your bucket slightly for a few weeks or 2) the disease burns out and is no longer producing the inflammation. While doctors like to say this happens in 1-3 years, it is more common in reality to take much longer. While the side effects are worse at the higher dose, starting with a high enough dose is the only way to get it under control and give the body the chance to heal.

[MikeVanBC in reply to cranberryt]

Thanks Cranberry. That’s a very compelling analogy.

[MikeVanBC in reply to cranberryt]

But I hope that doesn’t mean the only way to quit prednisone is to kick the bucket

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

Nope!!! I avoided the bucket..😉

[PMRpro Ambassador in reply to MikeVanBC]

No- eventually the leaky tap I use as the analogy with the bucket gets repaired and the bucket stops filling up ...

[MikeVanBC in reply to PMRpro]

Yes, that makes sense. But isn't it presumably still consistent with that analogy that the bucket may be catching all the new fill, and that I'm just looking for enough of an additional Pred boost to mop up the previous overflow?

[PMRpro Ambassador in reply to MikeVanBC]

It is yes - but there isn't really anything more you can do but manage your symptoms. Or take lots more pred - which no-one really wants to do.

[cranberryt in reply to MikeVanBC]

That made me laugh out loud!

[TB1208]

I was started on 15mg. Rheumy told me I would feel like a new woman....it was a big improvement but not quite new woman! She wasn't sure if I should go to 20mg as she said she had never prescribed that dose. I said I would like to try and she agreed. She told me she could cure me in 18 months. 6 years later I am still on steroids...have bad days and not so bad days. Rheumy discharged me last year.

[PMRpro Ambassador in reply to TB1208]

Basic error: you can't CURE most autoimmune disease. Just manage the symptoms.

Such arrogance ...

[Grammy80]

Welsom Mike, You have already received tons of good advice....and your sense of humor will certainly help. I'm a GCAer and this site and the wonderful giving folks on it....saved my sanity AND armed me with knowledge to be a better patient~! Glad you are here.💕

[MikeVanBC in reply to Grammy80]

Thanks for your very kind welcome Grammy. Much appreciated, 😘

[PMRCanada]

I started at 20mg pred and had a miraculous response within about 12 hours. At the time I was very overweight and my GP thought it best to start at 20mg for 4 weeks to mop up all the inflammation that had been building up for 6 months prior.

I hope your recent increase in dose addresses your pain.

By your name I’m assuming you are from Vancouver, BC. Beautiful city. Hello from a fellow Canadian. 🇨🇦

[MikeVanBC in reply to PMRCanada]

Thanks PMR. I’m ready for a miracle, as I’m sure we all hope for one. But as the songs and saying go, there;’s a stairway to heaven, and a highway to hell, so it the latter appears to have more traffic! 😜

[cycli in reply to MikeVanBC]

Hi Mike. Sorry I'm late to the party. Same age and if you read my profile you'll see I too was a crab and had given up. Also have GCA so really hope yours is just PMR and that 20mg works. I never had enough to start mopping up inflammation and still suffering consequences. We are all different but you are at the right place on here with good advice, understanding and support which you will need. Your muscles were starved of oxygen, they cramped and locked. This physiological condition was imprinted in muscle memory and you need to retrain the muscles. Stretching whilst PMR still active won't work until inflammation is controlled. The hip flexors are the worst and need to be opened up in order to take a proper full stride. my exercise regime takes you from cripple to full flex in easy stages so try it and see if it helps. Welcome to the club no-one wanted to join. healthunlocked.com/pmrgcauk...

No miracles or spring back Mike. If there were I'd be a likely one as everything I've previously overcome has been like that however serious. This disease is a doozy and totally unpredictable. The one consistent factor is that it is in charge, not you. Accept, Assess, Adjust. My 3A's. It doesn't stop you hoping for a return to something like your previous condition pre-PMR, but it allows you to accommodate your present state and stops you from trying to force your body to do something you will be physically incapable of doing. Doing so will only set you back on a flare and you'll have to start all over again. Good luck.

[MikeVanBC in reply to cycli]

Thanks for the info Cycli 👍

[cycli in reply to MikeVanBC]

lots to digest. How are you doing Mike?

[MikeVanBC]

Hi 2Cue, thanks for the info. What happened when you jumped to 40mg, and how long did you stay there? Any positive/negative info on that course of action?

[MikeVanBC]

Wow! Thanks for sharing the details. That is one heckuva wild ride! What was your cumulative total in prednisone, and did it cause you any other problems? And after all this, are both conditions in emission?

[MikeVanBC in reply to MikeVanBC]

Remission?

[MikeVanBC]

Up, Down or Sideways ???

Hello Kind Folks,

To provide a brief update, since diagnosis on April 26th I’ve increased my Pred dose from 15 to 20mg given I’m 185 lbs. I guestimate an 80% improvement because I can walk again and finally put on my own socks!

Lower body from chest down is essentially pain-free. Right shoulder remains tortuous, and I can’t lift that arm. Neck and left arm are sometimes stiff and painful, but it’s the right side that’s of concern. Of course, wouldn’t you know it, I’m right-handed, so there are all kinds of actions that trigger pain or discomfort.

Given there have been so many improvements elsewhere, I’d appreciate opinions as to whether I should stick with 20mg and hope the right shoulder/arm has gradual improvement, or boost a further 2.5-5mg in the hope that may settle it down?

I know all increases will later need to be reduced gradually, so I’m torn between accepting some degree of painful discomfort and seeking to at least temporarily vanquish the villain.

I’ve seen a few references to finding the med dose that provides a 70% improvement, and I am thankful to have achieved a higher threshold, but that may in part be because I was so severely overwhelmed to the extent I could barely move.

The strange thing with the right shoulder and arm is that it can be more painful some days than others, to the extent it’s too acute to sleep. Today is one of those days. It’s like that old saying, Cheer up, things could be worse. So I cheered up, and sure enough, things got worse.

Yesterday I had an X-ray and ultrasound, to see if there’s something else going on with this right shoulder, and should have a report in a few days. If there’s no sign of some other problem, do you think it’s worth trying to up my pred to try and settle it down, or just accept that I won’t be able to win at Wimbledon any day soon?

[PMRpro Ambassador in reply to MikeVanBC]

Before I write a long reply here - I suggest you post it as a new separate thread. Because of the way HU works more people will see a new thread - only people who actively followed this thread will be notified about this reply. Which really means DL and me

But I suspect this is not entirely "just" PMR - it is your dominant arm, I bet you use it a fair bit and probably more than you should, especially if there is any damage there. If you have achieved the 70% improvement I think it is probably better to be patient and certainly wait to see if they find any damage there. If there is soft tissue damage then more pred isn't going to help that in the medium to longer term.

It is possible that you have myofascial pain sydrome affecting that set of muscles - caused by the same inflammatory substances as PMR except in MPS they are localised in trigger points in large muscles rather than being systemic. Pred does help some - but you need a lot of oral pred and locally applied techniques are often more effective.

[cycli in reply to PMRpro]

not just you two. Mike you haven't come back to me but that's ok. You've got a longer journey than you are currently planning for. Be patient and bear with it. Good luck

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

I would think there has more going on with shoulder (tell me about it!) .

If it varies a bit day to day, have you done extra the previous day or two..doesn’t take much for it to complain.

You could try painkillers (not ibruprofen) or topical gel on the days it’s bad, and see if there’s any relief. If so, probably suggests other things, if not, likely to be PMR…

Then you can decide if you need to up Pred.

Do empathise about the no sleeping -been there pre GCA diagnosis -and post with OA - replacement shoulder 2 years ago - so now not an issue. But I do remember it well.

Hope you soon get answers

[MikeVanBC in reply to DorsetLady]

Thanks to you both for your thoughts I appreciate your feedback, and am not sure exactly how to start a new thread, which may not be necessary given your advice anyway. Thanks again 🙏

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

Well it’s up to you -but if you can copy your comments above and then paste them into a new post -select the WRITE option at top of screen -everyone will see it.

PMRpro and I can then copy our responses as well for completeness.

[PMRpro Ambassador in reply to MikeVanBC]

Same as you did when you started this thread

[cycli in reply to MikeVanBC]

Mike you haven't come back to me but that's ok. You've got a longer journey than you are currently planning for. Be patient and bear with it. Good luck

[MikeVanBC in reply to cycli]

Thanks very much Cycli 👍

[MikeVanBC in reply to MikeVanBC]

I just read your amazing story. Wow! It’s encouraging to hear of the progress you’ve made on the other side of all this adversity.

[cycli in reply to MikeVanBC]

Cheers Mike. Not there yet but still hopeful. To be honest it is a bit depressing to watch the body deteriorate so much from where it was but can't be helped. Falling downstairs and cracking a rib hasn't helped but it's manageable. Skin damage is nasty and blood thinners to prevent another full blown PE doesn't help either. Hopefully on the up soon. I reckon that it has bottomed out now and hoping to start reduction of pred again soon so we try again if the inflammation has been controlled. You'll learn a lot about how the body really works now as you will have to think about it seriously because it won't do automatically what it used to get getter. Your body's defence has been working against itself. Quite a shift in attitude to accommodate. Have fun.

[MikeVanBC]

Thanks DL. You made that easy enough for even me to understand 😘

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

Not saying nuffink!