I'm having a hard time with this. My thighs ache, but not in the morning. It's usually in the evening, long after I took my dose of prednisone, and also after I walk or garden or exert them in any way. (I'm not doing major exercises. Just normal, routine stuff.)
How do I know if these pains are PMR-related or prednisone-related? I have read that prednisone, itself, can cause muscle aches.
I'm three months in to this and my rheumy had me taper too quickly twice now, so I'm still trying to figure out what my correct dose is. I'm on 25mg but I still feel these aches in my thighs as described above.
Also, I have a really strange symptom in my legs I have not heard anyone else talk about. Basically I am having continual, long lasting small muscle spasms ("fasciculations") in my legs. You can literally see them happening--everywhere; in my calves, thighs, hamstrings. Again, this usually happens in the evenings as well as after I walk. It can last for hours.
Does anyone else experience this? And is this from PMR or from prednisone?
Lastly and relatedly, if prednisone slows down healing while simultaneously reducing pain, and I have small tears in my hamstring tendon insertions (revealed in an MRI), then I assume I should interpret my minor hamstring pain as injury pain rather than PMR pain. Is this correct? My hamstring pain is a sharp pain. It comes intermittently. It is totally different from my the generalized achiness in my thighs.
I think it's important that I know the difference between PMR inflammation pain and pain resulting from something else, like an injury or prednisone-induced mylagia. It's kind of crazy to me that prednisone can induce myalgia. Talk about complicating the situation!
Thank you in advance for anyone who can help shed light on this for me.
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sferios
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Holy cow! I just read some past posts about DOMS (delayed onset muscle soreness), and the fact that this is NOT a flareup. I think this may be what I've been experiencing in my thighs in the evenings (and the next day) on days I go walking, and especially after days I do my gardening (stand up, squat, stand up, squat).
Why don't rheumatologists tell patients about this? I thought this whole time I have been having active PMR and might need to go higher on my prednisone.
I'm going to spend more time reading old posts. I am almost finished with Kate Gilbert's book. I really wish my rheumy told me about these resources. I had to find you on my own. I am learning so much and feel so much better just understanding things. Since I joined here over the past 48 hours my anxiety levels have dropped tremendously.
Also, aside from what I'm learning, just knowing that other people have gone through exactly what I am going through is so helpful psychologically.
Are their other communities like this one? (I almost didn't join because I live in the US and thought it was only for UK people.)
And just to clarify, if one of the pros can answer... What I am understanding is that I am very likely to continue to experience some soreness and pain even when I am on the proper dose of prednisone... Whether it's DOMS or the slow recovery from my hamstring tendon tears, etc... and that I should *not* interpret this pain or any pain as a flareup *unless* it gets progressively worse.
We have lots of members from the US/ Canada and Europe and do try to make our replies relevant to people from all over the world, in spite of having different medical systems and drug names. You have landed in the right place. You have a significant systemic illness and as you have learned the hard way you have to work with it by pacing your activities and getting plenty of rest. Pred acts on the inflammation like a painkiller might but has no curative properties. It merely helps whilst the disease runs its course. Magnesium is a helpful supplement for the pains that you describe. Doctors sometimes think that by listing possible side effects and symptoms we will imagine that we have them. This is not helpful, and sometimes they just don’t know. Thanks for your helpful post.
Hi SheffieldJane. Isn't it correct to say that pred stops the inflammation? It might not have curative properties, but it's a little more than a painkiller, right? I have heard it also prevents damage.
And that brings up another question. Does pred really have no bearing on remission? Is it really just helping with pain and inflammation until the disease runs its course on its own? Or does it hasten the disease running its course in some way?
Maybe there are no studies that can conclusively say this one way or another, but are there any theories about this?
It is one of the most effective antiinflammatory medications available. Leaving long term consistent inflammation to continue causes damge to the cells it affects which can have longlasting, even life-long, consequences. Longterm systemic inflammation can predispose to many other disorders including cancers, vascular disease including heart disease and many other things. Moderating that inflammation is important.
Pred has no known effect on the underlying cause of the disease so no, it doesn;t speed upi attainment of remission in that sense, just drug induced remission.
So interesting. Thank you. Is there a theory as to why PMR goes away at all? It seems that most other autoimmune disorders don't tend to go away on their own (at least not in most people like PMR does).
No, it just does. In fact, inflammatory arthritis will also go into remission at times. Some patients start with palindromic rheumatism which moves around and can also disappear for months at a time. And about half of patients who demonstrate early RA symptoms go into remission
"Early inflammatory arthritis is remarkably common. However, in up to half of patients the disease resolves spontaneously over a few months.1,2 In the rest, the processes driving the natural resolution of inflammation are disrupted, leading to a switch to chronic persistent disease characterised by the accumulation of large numbers of lymphocytes, macrophages and fibroblasts in the synovium."
It is also seen in GCA where there may be a short period of typically GCA symptoms which then just disappear on their own - it happened to me, I had jaw claudication and a sore scalp that resolved on their own.
You are very early into PMR, and as you are discovering it takes time to differentiate between the pain associated with that and other things [such as DOMS]. Can I suggest you keep a diary - and then you can see if there are any specific triggers.
As you are working through old posts, maybe have a look at the FAQs - they will cover most of the things you are experiencing. …and as they also have responses - which other platforms may not - you will glean more of an insight.
As for you main question, you may experience some soreness or pain which is not necessarily always PMR pain…. I did send you a link regarding steroids withdrawal versus a flare in reply to another post - but have attached again -
Doctors don’t tell you lots of things, because they don’t know…..or don’t think it’s important.
This is the only dedicated PMR/GCA forum on HU platform, but the charity does have a Facebook page [more chatty I think] and there are other Facebook pages - not supported by charity, so couldn’t say how good they are.
The charity is UK based, but you will find there are a lot of other nationalities here, mainly because there is nothing similar in their own country .. and of course it does have its own website -
Thank you. I started a journal about a month ago. I write in it twice a day, morning and evening, and I write all my symptoms. What I *haven't* been doing is writing my daily activities. Now I'm going to start that also.
Last night I cried in bed with my wife. (The pred has been making me cry a lot, but it's always about real things.) Anyway, I told her that I have turned a corner, that I finally understand what's going on with my body, and what I need to do. This has been very hard for her as well. She's never seen me afraid and worried and confused like I have been.
I am sure I'm in for a number of surprises, but I feel I have a grasp on the basics finally.
Good to hear you are adjusting -and yes it is difficult for loved ones -it’s not only your life that has been turned upside down…sometimes as patients we forget that.
The more she understands, the more you can both discuss it -the better. Maybe give her this link to read - it probably won’t sink in immediately (for either of you) but as you go on, it will make more sense-
Re your muscle twitches, i got them really bad in my face when i started pred. It eased when the dose reduced. Hopefully yours will be the same. Good luck with everything, dont overdo the gardening!
For the muscle twitches you could try magneium supplements - pred makes you lose more magnesium through the kidneys, Blood tests don't show it until you are very very depleted, the blood scavenges from the muscle cells to keep its level up and you can't measure cell magnesium very easily.
I think your pains are more over-use of certain muscles - squats as part of gardening are hard work! Once muscle soreness starts it takes time to recover - repeat the action while you are still sore and it never heals.. The training effect is created by making microtears in the muscle fibres which strengthen the muscle once they have healed. That happens quite quickly in the healthy muscle - much more slowly in the PMR pr pred affected muscle. The idea is to avoid it ever happening in the first place and that means accepting a whole new normal and starting with a very low level of activity and building up very slowly,
Some medications can cause fasciculations. I had them in my calves years ago and it turned out they were caused by the particular HRT I was taking at the time . Obviously this doesn’t apply to you but it may pay you to look up side effects on any other medication you may be taking.
Glad you found us and are beginning to make some sense of this very confusing illness. We all experience it differently.
Personally, it took me a long while to figure out how to differentiate PMR pain, with DOMS, a flare of arthritis and/or hip bursitis. Now, I try other treatments for each of these before jumping to flare option. However, if I get my typical unique PMR pains that continue to worsen no matter what I do, I consider a flare.
I live in Canada, but spend the cold winters here in the heat of Panama.
Keep reading and asking questions. And by the way, there are no stupid questions.
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