Hello from Canada 🇨🇦

[Boxinglife88]

Can anyone recommend a pain killer that isn't ibuprofen? It feels like someone took a hammer to my legs and hips, at different times of the day.

[Nextoneplease]

Hi Boxinglife 😊

Sorry you’re in such pain. Does it feel like PMR? If it does, I’m afraid that only pred (or a steroid sparer such as toczilimab) will help. If you are flaring you may need to up your dose and/or reduce your activity levels.

If you have other problems such as arthritis, then painkillers such as paracetamol, or drugs like methotrexate may help.

Can you describe your pain a bit more? And have you seen a doctor about it? Does it seem like PMR or something else?

Sorry about the questions! I hope you get some relief soon 🤞All the best to you x

[Boxinglife88 in reply to Nextoneplease]

Thank you for your reply. It is definitely pmr. It is a deep, dull ache, in my hips, buttocks, thighs, shins. I see my dr regularly, but she is not that up on the disease, but does listen. I saw the rheumatologist about 3 years ago, she said I wasn't severe enough for a specialist and I may have to stay on 4 mg indefinitely.

[Orange_2022 in reply to Boxinglife88]

I occasionally have that awful ache inside my thigh - seems to correlate to a dose reduction and it comes and goes. I found ibuprofen gel helps when it's really bad but ibuprofen isn't recommended. I believe that the gel isn't so bad but shouldn't be used regularly. You might just have to stay on a higher dose for a while longer and hopefully the pain will subsude so you can taper slowly in future. You have my sympathy as it's a horrible feeling.

[Nextoneplease in reply to Boxinglife88]

Just a thought - have you tried VERY gentle stretching type exercises? Sometimes when I don’t feel good I find that I ‘hunker down’ and actually stiffen up through lack of movement.

Heat also helps - a warm blanket over my legs and knees while sitting, for example.

Do consult your doctor about your dose and pred taper though 😊

[Boxinglife88 in reply to Nextoneplease]

Yrs, thank you. My Dr. isn't much help, but I believe she wants to help, if that makes any sense?

[Nextoneplease in reply to Boxinglife88]

another thought. Have you had your calcium and vitamin D3 checked? I had the sort of pain you describe years ago (pre PMR). It was awful. No painkillers touched it. Turned out I was vitamin D deficient and a high strength course of supplements helped immensely.

Really I would hope your doctor could think outside the box on this x

[Boxinglife88 in reply to Nextoneplease]

I do take Vitamin D daily, but don't think I have had it checked

[PMRpro Ambassador in reply to Boxinglife88]

Yes - it all depends on that baseline. The usual supplementation level are rarely enough to get a low level up to replete. Worth getting it checked and seeing if a higher dose is appropriate.

[123-go in reply to Boxinglife88]

We’ve had several posts from patients in Canada recently: it does seem that knowledge in PMR is sketchy. Rheumatologists are supposed to be specialists and ‘should be’ experts in treatment and management of musculoskeletal diseases: I’m not sure what you mean when you say the rheumatologist said your condition isn’t severe enough for a specialist. PMR is a chronic, debilitating disease and it’s clear that inflammation in your body is widespread; can you convince your doctor to increase your prednisolone to 10mg for at least two weeks and see how things go? Have you ever been pain free? It is of no use to be on 4mg if you are experiencing so much pain.

I’m sorry if I appear to come across as negative in some of my remarks but you deserve better.

[Boxinglife88 in reply to 123-go]

In my small town it is very hard to see a specialist, your condition has to be so severe you are unable to function. I am rarely out of pain, but do not want to increase my prednisone

[PMRpro Ambassador in reply to Boxinglife88]

But it isn't as simple as pred bad, no pred good. And when you aren't taking quite enough, then you might as well not bother in many ways, The ongoing inflammation is causing damage too and it may be that if you took more pred for a short time and got things properly under control, you would get almost back to where you are but with a far better quality of life.

[Boxinglife88 in reply to PMRpro]

Good to know! I asked if It was doing any damage pushing through the pain and I was told NO

[posthinking01 in reply to Boxinglife88]

You will exhaust the adrenal gland even further!

[PMRpro Ambassador in reply to posthinking01]

It isn't anything to do with the adrenal glands - and they don't get exhausted!

[posthinking01 in reply to posthinking01]

Disagree - Pred etc. are to supply the adrenals with cortisol they are lacking.

[PMRpro Ambassador in reply to posthinking01]

That isn't the right way round. The pred suppresses the normal production of cortisol - think of a wood burner in the room where the thermostat is for the central heating boiler. As long as the wood stove (pred) is producing heat, the thermostat tells the boiler (adrenals) it needn't run and produce heat in the radiators because there is already enough present.

[posthinking01 in reply to PMRpro]

Well sort of - but as an Addison’s patient plus plus multiple medical issues - the pred supplies the cortisol being under supplied - I know as on a daily basis I have to work out my dosing - even weather affects it - the reason for the pain in PMR is inflammation etc. exacerbated by lack of the anti inflammatory steroid produced naturally by the little bud on top of the kidneys that supplies all the sex hormones oestrogen progesterone DHEA Pregnenalone and life giving cortisol - I have emergency injection kit to be taken if minor surgery etc. - I think you are getting confused that when you take steroids the feedback loop drops the natural response down because it doesn’t need to work so hard as drug being taken and the thermostat of the body is the thyroid gland and the adrenal glands and thyroid are interlinked !

[PMRpro Ambassador in reply to posthinking01]

Ah yes - but that is different. You have TWO illnesses. Very few PMR patients are in the same situation as you so what applies to YOU doesn't apply to them.

[PMRpro Ambassador in reply to Boxinglife88]

Depends how you look at it - the muscles and other soft tissues are delicate due to the inflammation and the pred as well as are more prone to developing DOMS or being injured. How much do you know about how muscles respond to exercise to develop the training effect? VERY basically, during exercise, two parts of the muscles fibres slide against each other, causing microtears - that is what is the cause of DOMS. When they heal, the muscle is stronger and can do more next time. When you have PMR your muscles have two problems - one, the muscles are unable to tell you they have had enough and you should stop. So you overdo things. And they don't heal as well to develop the training effect and take much longer, they may even not heal properly. Especially if you push through the pain and/or continue to exercise despite the pain. Contrary to the "no pain no gain" belief (which should be banned) pain is there as a warning and you take risks ignoring it. When you still hurt from the last exercise and go out and do more - the microtears may never have a chance to heal. And you continue to hurt. So yes, you CAN do ongoing damage as well as feeling rubbish. Constant pain is not good for you and can cause other problems.

[123-go in reply to Boxinglife88]

“…….barely able to function….” sounds brutal!

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

We’ve had several posts from patients in Canada recently: it does seem that knowledge in PMR is sketchy.

I think that’s putting it politely -seems to have been like that for many a year!

[123-go in reply to DorsetLady]

I try to be polite 😉. “You wouldn’t like me when I’m angry”…I turn into the Incredible Hulk!

[Potemkin]

have you tried baths with Epsom salts? I found some relief from symptoms when I did that. Helped me sleep.

[Sheilamac]

sounds like you are not on nearly enough Prednisolone

[PMRpro Ambassador]

The only real options are paracetamol or codeine preparations. But since you say this is definitely the PMR - nothing except the right dose of pred will sort it out. As for a rheumy claiming PMR isn't severe enough to need a specialist - well, 123-go has said it. And I'd say this is a situation where a rheumy SHOULD be able to sort things out - though on the basis of what I hear from our Canadian friends here, I'm beginning to wonder!

Other suggestions have been made - can you get your vit D checked? Can you get an appointment with a physio and investigate things like GTPS (greater trochanteric pain syndrome) and the various bits now included in that - piriformis syndrome and bursitis predominate there.

Can you be ore specific about your pain?

[Boxinglife88]

Thank you so much for all your information, it has helped me get through the day to day struggle of this ever changing disease. My dr usually asks me what I think I should do??? Ummm, aren't you the professional? My bloodwork never seems to show much inflammation, other than when I was initially diagnosed, but I am definitely inflamed.

[PMRpro Ambassador in reply to Boxinglife88]

"My bloodwork never seems to show much inflammation"

Which sounds as if it is showing some? Any is too much, this isn't a disease you can tolerate a bit, it is either managed or it isn't. You need a high enough dose of pred to get the markers low and stable, i.e. not still falling and the symptoms also stable and a few as you can get.. And then that is your guide - the best state you get to with the higher doses. You should never feel worse at the end of a taper step than you did at the start. But symptoms ALWAYS trump markers. ALWAYS.

He may be the professional, but he hasn't had PMR himself and everyone is different anyway, it doesn't come with a handbook. Count yourself lucky that you have a doctor like that - he is likely to let you manage things better.

[Boxinglife88 in reply to PMRpro]

I think I need to start taking this seriously! Thanks for your expert advice ❤️ I have been overdoing it since I was diagnosed ( may be why the pain isn't under control) I walk, ski, do a boxing workout twice a week, paddleboard. I have had to modify how I do things, but I always much through.

[PMRpro Ambassador in reply to Boxinglife88]

Ah yes. You have a whole NEW normal now. You can't push through the pain - you leave your poor body in a permanent state of DOMS (delayed onset muscle soreness). I continued to ski for years but not as intensively as before. And you have to start from scratch establishing your limits, I took 3 or 4 weeks at the beginning of the season to get going. It meant shorter runs - so I could rest on the lift at shorter intervals. It increased through the season but I never got back to how I'd been before. You have good and bad days - and what went yesterday may not go tomorrow.

[123-go in reply to Boxinglife88]

Perhaps your doctor could be persuaded to join this forum-seriously. He doesn’t have to post or comment on anything but he would learn a lot that would boost his knowledge and be of great benefit to you. There is a wealth of information in FAQs. 🙂

[Nextoneplease]

Ah Boxinglife, I should have guessed from your username!

You don’t have to stop exercise completely (😣) but you do need to take it easier and in stages until you find your new level. Frustrating, I know, but essential…..

Good luck and don’t rule out a temporary rise in pred (for a week or so, if you follow the flare protocol) just to get yourself on an even keel. But for now it seems that your main goal is to find your new exercise level xx

[HeronNS]

Just adding to the great information already here, I agree you most likely need a bit more pred and a little less pressure on yourself trying to be as active as before. PMR is a treatable but serious enough systemic disease so coddle yourself a bit.

Have you tried soaking in a bath with Epsom salts? That can be very relaxing at the very least, and the magnesium absorbed through the skin will probably have some effect on any pain or stressed muscles.

Do you use a slow taper method when you reduce your pred dose? If not, please do when you start to taper again from whatever dose eventually sorts out the pain. That way you'll know when you've reached your (temporary) lowest best dose and avoid a flare. 🍀

[Boxinglife88 in reply to HeronNS]

Thank you. Yes, I take baths with Epson salt regularly. I have tried to taper below 4mg over the years. Very slowly 4 one day 3.5 the next for a month, then 3.5 for a month and so on.

[HeronNS in reply to Boxinglife88]

Maybe that is your lowest best dose? I was at or near 2.5 for years, with frequent attempts to taper. My PMR + pred journey lasted almost exactly 8.5 years! Been off pred for PMR for 11 months now. Unfortunately have discovered pred was doing more for me than treating PMR pain, and that 2 mg had been controlling an autoimmune skin condition (relatively minor sarcoidosis symptom), so now in the position of taking 5 mg and my kind GP has supplied me with enough pred renewals that I should be able to taper back in the usual slow way to 2 or 2.5 again. Looks like pred will be my companion till end of life. Sigh.

[Boxinglife88 in reply to HeronNS]

Did your pmr go as fast as it came on?

[PMRpro Ambassador in reply to Boxinglife88]

HeronNS says in her reply she had it eight and half years! So no, don't think it went fast!!

[HeronNS in reply to Boxinglife88]

No, it didn't come on fast, nor leave fast. I certainly had it in its glory for a year before diagnosis and probably had something lurking before that. So add that to the 8.5 years with pred and we are getting on for 10 years, a large proportion of that at a very low dose, and time taken for very slow tapers. My first effort reaching zero was 2020 and I had to start pred again within a few weeks and take it for about 3.5 more years.

[lalar]

Good morning I am in Canada as well but on the West Coast. Where abouts are you?

I have a fabulous Rheumy - 2nd one. She even called me the night after my breast surgery to see how I was! I could ask her if she knows of anyone around where you live?

I have had PMR going on 4 years this February. I have reduced to 5 mg of pred. I am having a flair as I write this possibly due to all the other stress and surgery I have had the last few months so I am now upping to 10mg and then back down.

The advice on here is fabulous and by reading the posts is how I got thru the first 2 years of PMR.

My first experience with a Rheumatologist in Canada wasn't great but I persevered and found this wonderful soul that I have been seeing now for 2 years.

My routine I don't go to bed without my magic bags(available at drugstores) and yes I always where socks to bed. This significantly helps with my pain and also helps me to get a better sleep.

[Boxinglife88]

Thanks for the great information. There is only one rhuemy in Cranbrook, BC, she is such a lovely person and apparently a very good Dr., however, my pmr could be treated by a gp, to free upbthe rheumy long what times, but they don't seem to know much about pmr.