Pain deep in thigh muscles and upper arms PMR or something else?

[PipandDots]

I have tapered from 15mg to 1mg since May 2022 and have been at 1mg for a month, feeling pretty good. However for the last week I have considerable pain in the front of my thigh muscles (feels deep inside the muscle) and also some pain in the top of my arms. I'm wondering if this is PMR raising it's head or something else. Do I ride it out or up the Pred? Hoping someone can help me.

[DorsetLady PMRGCAuk volunteer]

Would plump for PMR grumbling— 17 to 18 months is not long in the lifespan of this illness.

This link gives advice on dealing with a flare -

healthunlocked.com/pmrgcauk...

but you may find that a smaller increase will suffice - but there’s no way of telling until you try.

[SnazzyD]

Oh dear. 16 months is very good going to get to 1mg. It’s a bit suspicious that it is bilateral and your arms are complaining too, which points to PMR. First question is, have you done any unusual activity a few days before onset? Also have you had anny unusual stress/illness? Did you have any niggles at all that you were happy to put up with before?

[PipandDots in reply to SnazzyD]

Thanks for your reply

I did have a long weekend in Croatia 2 weeks ago and did a lot of walking

[DorsetLady PMRGCAuk volunteer in reply to PipandDots]

That could have caused a flare … had it been DOMS (delayed onset muscle soreness) then would have expected it to be issue before now.

[SnazzyD in reply to PipandDots]

So it started a week later not a couple of days. The fact that the arms are brewing as well and its early days as DL says, suggests a flare. You’ve been given the info and acting now might just head it off at the pass without a big increase.

[123-go]

I was just about to send same link as DorsetLady. I also felt that you have had PMR for a relatively short time-not unknown but fairly uncommon. Good luck with dealing with these symptoms by following advice for a flare.

[piglette]

Sounds very like PMR still hanging around. I would increase by 5mg for a week or so and see if that helps. Then drop back down ideally in two steps to make absolutely sure things are OK. Whatever you do DON’T try and tough it out. PMR will win!!

[PipandDots in reply to piglette]

Thanks so much for your reply I’ll give it a go although it feels like I’ve failed and it’s making me feel sad

[piglette in reply to PipandDots]

Don’t feel like that. You have got down to a very low dose much faster than most of us. I know how it feels having to admit you need to increase for a while, a horrid feeling.

[DorsetLady PMRGCAuk volunteer in reply to PipandDots]

You haven’t failed -although some doctors may imply that.

You have to realise that the way you can reduce -how fast or how slow -is in the hands of your illness … some people get through PMR easier than others…

Unless you do something really silly along the way -it’s not your fault. 😊

[Sharitone in reply to PipandDots]

In the eyes of most of us here, you are a resounding success!

[PMRpro Ambassador]

I suspect that 1mg is just slightly too low - did you drop by 1mg from 2mg? That is a massive change in dose relatively speaking! I would add 5mg for a week and go back to 2mg and stick there for a couple of months at least. It is already a very low dose - you have done well.

YOU have NOT failed - you are NEVER reducing the dose relentlessly to zero. The pred cures nothing, it is a management strategy so you start with a springclean to mop up all the accumulated inflammation in the soft tissues and then you taper slowly in a process called titration to find the lowest effective dose, the lowest dose that works as well as the starting dose did. You do that just like you did in chemistry at school - the first time you keep tapering until the symptoms start to appear and then you go back to the last dose that was good, Once symptoms are there, you often need the cleanout first before the low dose is enough to leave you with minimum pain.

Half of patients get to 5mg in 18 months, the rest take longer - you are way ahead of the curve. Don't be sad.

[PipandDots in reply to PMRpro]

thank you for your advice and kind words of encouragement

[SheffieldJane in reply to PipandDots]

I was being kept awake by aching legs the other night and rubbing Flexiseq. In brought me almost immediate relief. But you have gone down fast, PMR has its own pace. Don’t be sad, the disease is the boss - sadly.

[PipandDots in reply to SheffieldJane]

you are so right, I just need to cut some slack!!

[PipandDots in reply to PMRpro]

Hi PMRpro, I was tapering at 0.5mg each time since last October when I was on 6mg. Staying at each stage for several weeks. So I was on 1.5mg for a month before dropping to 1mg for a month. I figured that was slow enough but it has come back to bite me! Everyday is a school day!

[PMRpro Ambassador in reply to PipandDots]

However slowly you taper - nothing will get you below the lowest effective dose. You need enough - 1,5mg can be plenty, 1mg may be too little.

[PipandDots in reply to PMRpro]

Thanks so much, you explain it so clearly x

[Indigo2417]

Can’t help with the medication advice as I’m just starting on the PMR road, but I can empathise with the pain in the thighs and arms. Well before PMR reared itself, I had pains in my thigh muscles down the outside, at in bed at night that I attributed to doing too much with physio exercises during the day. Physio that I saw said it was Trochanteric Bursitis and gave me different exercises. I still struggled with them, but I’m thinking now that it was my body starting to say it had had enough. I found I have to get up and walk around for a bit and maybe give legs a gentle massage before trying to lay down again. Best wishes to you.

[PMRnewbie2017]

I have a similar tale. Rome in April, lots of walking. Pred 2mg. Thighs sore and screamed when climbing stairs. Interestingly Ibuprofen at bedtime helped so i assumed DOMS etc. I continued to taper very very slowly via 1.75mg, 1.5mg, 1.25mg to 1mg . At start of September I was on 1mg and thighs were still a problem then I noticed my neck and upper arms were becoming sore. I went to the theatre and I couldn't climb the stairs without extreme discomfort. Then I realised I had been flaring albeit simmering, since Rome. Like you, I am so disappointed but now I'm pain free and have my quality of life back thanks to an increase in Pred. I've been at this for nearly 6 years now, there really is no point getting upset. That only increases stress. Find your optimal dose and stay there for a month before you reduce again by following DSNS and no more than 10%.

[PipandDots in reply to PMRnewbie2017]

Thank you for taking the time to share your similar story, I really appreciate your advice. What dose are you now pain free on and does the Pred give you any side effects at this dose? Thanks

[PMRnewbie2017]

I hit it with 7.5mg for 3 days. Then 6mg for 3 days. Then 5mg for 3 days. Now on 4.5mg for a week and totally pain free. I will start another DSNS at the weekend. I suspect my dose is around 2.5mg. My Dad had PMR and was never Pred free so I'm psychologically preparing myself that I may be the same. TBH if I stay on 1 to 2mg for life (I'm 65) there are worse illnesses and drugs out there.

[PipandDots in reply to PMRnewbie2017]

Thanks so much that's helpful.

Good luck for your future x

[Loveopera]

Thankyou all for this post - reading through it has helped me decide I need to go back up with my dose. Ive been going gently down from 5mg Pred since December but now trying to take another step down from 2.5 . Ive been trying ignore recent discomfort thinking its just arthritis i must learn to live with at my age (feeling otherwise relatively young at 78 !) i have replacment knees which are getting a bit past their sell by date too. Quite severe pain in my upper arms morning and now evening and struggling to get out if bed in the last couple of weeks has kicked in so im pretty sure its a flare - so ill go back uo to 3mg to see if that helps. Im very disappointed but it seens the only way…

[PMRpro Ambassador in reply to Loveopera]

Not a flare really - just you have reached your destination of the lowest effective dose. You titrate the pred dose to find it by getting to a dose that is slightly too low to manage all the inflammation so you can feel it and then go back up to the dose that managed it.

[Myfoe]

My wife and I took a trip to the west coast of USA in last weeks of July I was at 8mg prednisone 20mg methotrexate I was diagnosed Aug last year I was feeling better than I had since PMR started we walked the beach nightly walked the stores and 2 casino days all with no I’ll effects we got home I went back to work the hvac broken 100deg F outside 80s in offices after being home 2 weeks I was slated to drop from 8mg to 7.5mg I woke up with some arm, neck and quad pain but it was minor I didn’t heed the warnings but 2 mornings later a full blown flare had developed I needed help out of bed I jumped to 10mg I am just now getting back to feeling better… sorry long ramble but if this sounds familiar please heed the warnings your body is giving I would be incredibly happy if I was below 5mg you are doing incredible

[PipandDots in reply to Myfoe]

Thank you for sharing your experience and advice. Good luck on your journey

[Albyn32]

I didn't realise that thigh pain and arm pain could be signs of a flare. I have both of theses and was putting it down to DOMS or too much golf! My ESR has been gradually rising after each recent taper 0.5 taper(tapering to 5 at present) but has still been in the "normal" range so I thought all was well. Maybe I should reconsider and treat this as a flare

[DorsetLady PMRGCAuk volunteer in reply to Albyn32]

Maybe I should reconsider and treat this as a flare

Think that would be very sensible….and rising ESR levels should be taken account of… a one-off higher reading might be just a blip, when when it’s repeated it’s time to consider it might be a flare, even if still considered within “normal levels”.

Usual advice for flare contain in here-

healthunlocked.com/pmrgcauk...

[Albyn32 in reply to DorsetLady]

Thankyou for your help

[PMRpro Ambassador in reply to Albyn32]

"My ESR has been gradually rising after each recent taper 0.5 taper(tapering to 5 at present) but has still been in the "normal" range so I thought all was well"

The normal range is NOT a range that is acceptable for one person. It is the range of levels found in 95% of a large population (usually 10,000) of nominally healthy subjects. SOme have low levels, some higher, some in the middle. Some are healthy with levels outside that range. If YOUR ESR starts increasing from the lowest you have achieved when on pred - there is a problem. Many things can increase it, a cold or something more serious, so a single raised level shouldn't trigger a knee jerk increase in dose but the test should be repeated a week or so later to establish if there is a rising trend. If there is, it signals the current pred dose is inadequate to keep the inflammation under control and you need to go back to the last dose.

[Brooklyn747]

Oh how I feel for you PipsandDots your dilemma is so relatable to me and given the responses to a good number of P.M.R. sufferer's. Just like you I tapered pretty quickly, on advice from Drs, and yo-yod with multiple flares, which I know makes one despair. Truly I cried reading your post as no matter how hard you try this disease just wants to bite you on the bum....and lots of other places as well!!!Take heart, you are not alone.

And aren't we lucky to have brilliant ambassadors and kindly supportive members who come to our aid.

Wishing you all the best 👍

[PipandDots in reply to Brooklyn747]

Such a kind message which warmed my heart, so thank you so much xx

I hope you’re in a good place now and I’m sending my very best wishes for you x

[Brooklyn747 in reply to PipandDots]

Thinking kindly of you Pipsnddots