Atypical muscle aches?

[sferios]

Hi again everyone,

I am really struggling to answer something and am hoping some of you might be able to help.

Basically, I am on 7 mg pred, and I have mild muscle soreness in my shoulders and thighs. My rheumys don't not think it is PMR inflammation. They think it's either pred withdrawal, AI, or DOMS.

I would like to know your thoughts and opinions. Here are some factors to consider.

1. I don't feel achy in the morning. It's always later in the day. (I take my pred at 7am, about an hour after I wake up. That hour before I take the pred is the best hour of my day.)

2. The intensity of the soreness seems to be correlated with increased physical activity a day or two before, but it's hard to tell because I don't engage in much physical activity these days except short walks, and I feel the soreness to varying degrees every day.

3. I felt the same on and off soreness even at higher doses of pred. Nothing has really changed in terms of muscle soreness during my taper, which has been over many months (probably faster than most of you would recommend, but the pred was causing me major emotional, psychological and cognitive symptoms.) In any case, the soreness has not been getting any worse. I've been on 7 mg for three weeks now.

The reason this is so important to me is that both my rheumys do not think I have active autoimmune inflammation. (Blood work is fine.) They want me off the pred, and I want off because I am not dong well on it. The mental effects are horrible, and now I have 110+ fasting glucose also.

But I have always heard here not to taper while experiencing symptoms. The advice has been to see if the symptoms go away over the course of a week to know whether it is pred withdrawal versus a flare.

Well, the muscle aches haven't gone away, but at the same time, there are indications that they aren't PMR inflammation (see 1-3 above).

I am in a conundrum because I am worried that even this dose of pred may be harming me (pre-diabetes despite being on keto diet, for example), but I absolutely don't want to have a flare and then be forced to go up to an even high dose.

If anyone can help me understand what is going on I would be immensely grateful.

Thank you.

[piglette]

Pred withdrawal only lasts two or three days. Tylenol should help. Do painkillers help your soreness?

[sferios in reply to piglette]

Painkillers do not seem to help.

[piglette in reply to sferios]

Painkillers do not help PMR although they normally help other things.

[sferios in reply to piglette]

If I have sore muscles from steroid myalgia (delayed onset after activity, perhaps), will 500 mg Tylenol (I think you call it Paricetamol in the UK) help? I have never before used Tylenol before, but I tried it the other day and it didn't seem to help much.

The strange thing is that I don't have morning pain or stiffness. This is making it really confusing for me to understand what's happening.

[piglette in reply to sferios]

Tylenol does not really help PMR but can help steroid withdrawal and should help steroid myalgia. Although I did not think steroid myalgia caused much pain??

[sferios in reply to piglette]

There isn't a lot of pain. It's just a mild achiness and tenderness, mostly in my thighs. And it comes and goes. Always in the afternoon. Never in the morning. And has been with me for many months. Does not feel at all like the PMR pain I had initially, pre-pred.

[piglette in reply to sferios]

I should go on at your doctor for a diagnosis

[PMRpro Ambassador]

Sounds more like DOMS to me than PMR or possibly and effect of myofascial pain syndrome. The rheumies are wrong on one point - if you are on at least enough pred then even if the underlying cause of the symptoms we call PMR is still active, the markers will be low, blood work will be "fine". The only way you find out if it is gone is by tapering off the pred without the symptoms returning.

[Purple-Owl in reply to PMRpro]

What is DOMS? A few days ago I reduced Prednisolone after several months at 5mg to 4.5. I have now developed an ache on moving my left thigh and buttock. I am wondering how long I should put up with this, hoping it's an adrenal readjustment, rather than deciding it's a flare and upping my dose.

[Bcol in reply to Purple-Owl]

DOMS -Delayed Onset Muscle Soreness

[PMRpro Ambassador in reply to Purple-Owl]

The soreness you get typically after exercising a bit too much.

Difficult to say what that is - for me would be bursitis, early stages of greater trochanteric pain syndrome usually. Maybe the pred was calming it enough not to notice. Or maybe its coincidence.

[Purple-Owl in reply to PMRpro]

Thanks Bcol and PMRpro. I think I'll stick with the reduction and hope for the best.

[PMRpro Ambassador in reply to Purple-Owl]

Sounds like a plan - but don't be tempted to ignore too much ...

[SnazzyD in reply to Purple-Owl]

Have you looked up piriformis syndrome?

[sferios]

Thank you and yes, I'm keeping that well in the forefront of my consciousness.

Rheumies will be rheumies. 🙄

[Booklover57]

I have exactly the same, and have been off the pred since February. My osteopath has mentioned myofascial pain too. I also had much the same muscle aches, especially in the front of my thighs, at both higher and lower doses of pred. I can’t definitely link them to activity levels, it seems more random good and bad days.

I also did badly on pred generally, and developed glaucoma so would be loathe to restart. I have sort of learnt to live with them, paracetamol can help a bit. Good luck with the rest of your taper.

[Exflex]

I suspect the return of symptoms can happen at any dose… for me it was at the end of a 4W taper from 0.5mg to 0.25mg (would you believe that!! Drs wouldn’t!)

I upped my dose of steroids to 1mg for 7 days, then reduced to 0.5mg where I will stay for a few months before trying the previous taper again.

This Ai disease we suffer from is absolutely crazy. But if you need a certain dose of Pred to be out of pain, that’s what you need.

[Cobalt2sister]

Hi. Just wondering: do you take stations which can cause muscle pain and soreness? ( and have CK blood work checked). All the best to you.

[PMRpro Ambassador in reply to Cobalt2sister]

Statins and autocorrect I assume?

[Cobalt2sister in reply to PMRpro]

Yes,sorry didn't see the autocorrect thanks for catching!