Something doesn't seem quite right with my symptoms. Even my rheumy still isn't 100% sure that I have PMR. She calls it a "PMR-presenting vaccine induced myalgia."
First, the short history is three months ago the emergency room doc started me on 40mg prednisone because he thought I had myositis. Then a month later (after two taper attempts that were both way too fast, an an MRI that absolutely ruled out myositis) my rheumy gave me the PMR-type diagnosis.
Well, now I'm at 25mg and I have these symptoms that I don't feel are inflammation symptoms. Essentially I have these aches in both thighs that begins every evening. It's a muscle soreness kind of feeling that also includes tenderness to the touch. And if I stay on my feet too long (like ten minutes), I also feel it. God forbid I do an hour of gardening (squat, stand, repeat) or else my legs ache so bad it's terrible.
The thing is, if this isn't inflammation pain, but rather prednisone-induced myalgia, then it might mean I am way too high on my prednisone. But if it *is* inflammation pain, then maybe I'm too *low* on the prednisone.
In the beginning, when they put me on 40mg, all my pain was gone. I did not feel any leg aches and I could even do a mile walk every morning. But after the two way-too-fast tapers that caused major flare-ups (I had gone down to 15 mg from 40 in three weeks), I went back up to 30 for a few days, then 25 where I have been for three weeks now.
And it's about that time (2-3 weeks ago) where these thighs aches started. I can't even walk a quarter mile now, and I feel I might need a motorized wheelchair just to be able to do outdoor summer activities with my wife... like walking and hiking on the nature trails.
Now please understand, these leg aches aren't so bad I can't get around the house, or even drive to a store, buy things and come home. I might be a little achy after that but I can handle it. It's more like I can't do long walks, or garden, or anything that taxes my leg muscles even 10% of what I used to be able to do before this disease (whatever it is) struck me.
I really really need to figure out what is causing it. Is it inflammation pain, or is it muscle soreness related to something else (like the prednisone itself).
Here's more information... after three weeks on this dose and I have no other symptoms except some mild and intermittent focused hamstring pain right where my MRI shows I have tendon tears. So I think that pain is injury pain.
None of my pain has increased over these three weeks. This makes me think it is *not* inflammation pain, and that I should go down on the prednisone. (I have been planning on going down to 22.5 tomorrow morning.)
I do not feel this pain when I wake up. I take my pred an hour after I wake up, and that hour is always the most pain-free time of my day. I think this *also* indicates it's not inflammation pain. The pain usually starts early evening, or maybe 4pm... about seven hours after I take my prednisone. And it comes on faster and harder if I do physical activity with my legs.
Also, when I dropped to 15mg, I had a different kind of pain that appeared in my hips and glutes, as well as my shoulders and neck, which felt just like the initial pain I had before I started the pred. So what I *think* is that I this pain (the shoulder/neck/hip/glute pain) as the real inflammation pain, and that I should use *that* pain to assess my inflammation.
What do you all think?
Related to this is whether I should get a motorized wheelchair and whether what I'm experiencing is normal for a younger PMR patient like me that was previously in excellent shape. (I'm 53 and was very physically active before this.)
Am I just on way too high a dose of pred and it's giving me severe myalgia in my thighs?
Might I have something else besides PMR? (If so I cannot find anything online that matches my symptoms.)
I would be so thankful for any advice or shared experiences from anyone here, even if it only tangentially relates to my experience. I really don't know what to do.
Thank you everyone. 😀 ❤️
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sferios
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It kind of looks like I'm the only one up and not in bed! You will get some good input from the more experienced and scientifically educated tomorrow. I have GCA and really not equipped to give you solid PMR info. But...I had to say this...you are young and considering a motorized wheelchair to be able to go on walks with your wife and keep up some connected activities, right? I'm 82, but when I was 45, my health was a mystery, and I felt concerned. I went to the Mayo Clinic, got diagnosed, and set on the right path. Since you are in the States, that is always an option. Just a thought. 💞
Your symptoms sound very much like mine before I started the steroids. You have dropped quite quickly which may be causing the problem. I think I would be visiting my doctor for help though.
Have you been checked for LVV( large vessel vasculitis). Had PMR, GCA,LVV.
Anything tight on my legs(clothing) or repetitive movement including bending caused a burning and aching feeling to the quadriceps muscles in the front of the thigh.
The only diagnostic procedures I have had are blood tests and one MRI. I don't have GCA symptoms. When I look at all the different sorts of vasculitis in this article, none of them match my symptoms.
Did they test you for fibromyalgia? Test involves doctor ‘prodding’ you in various places over the body, which results in a score out of 18 & tells if you have it. I’ve had it for about 15 years now, & I suffer periods of time where my legs ache, just ache! Like you say I can drive, walk, but none of it pleasurable as the ache is so persistent. Just a thought, & something to rule out, perhaps?
Hi Pixx. Thanks for the suggestion. I don't think I have fibromyalgia. When I look it up, my symptoms don't seem to match (even before I started the pred). Do you have both fibromyalgia and PMR at the same time?
Wowza! Best wishes to you for healing. At least the PMR is supposed to go away eventually. Your more than half way to the average remission time, so I've heard.
Personally I think you are still overdoing the exercise or activity simply because you haven’t come to terms with the limitations of your condition. It is very early days to have got on top of the inflammation which you started with and the daily release of additional cytokines.
I was also at that point of thinking I would end up in a wheelchair which did not suit my lifestyle and expectations at all because I keep a pony and drive a trap. For many many months I struggled with the pain and stiffness in my thighs and legs before the PMR was diagnosed; my notes show that it took a long time to get it under control and resume my activity. Any extra demand on my body both mentally and physically raised my pain levels and exhaustion.
I did find that splitting my daily dose of pred allowed me to function better in the morning and I still take about 1/3 before bed and the balance first thing in the morning. Why do you leave it for an hour? The release of inflammatory cytokines at 3.30/4am needs addressing by either taking slow release coated pred at bedtime or waking up at 2 ish to pop your tablets and take a small bite of yoghurt, banana, something.
My own PMR was not induced by the vaccination it just came on suddenly while I was already being treated with pain relief including fentanyl opium patches which I continued to use for about a year after diagnosis. At a considerably reduced dose now and six years later I still get pain if I overdo things or am very stressed and also the pain of other things like age related arthritis.
I would say that it is very early days for you to get a proper handle on your condition and I fully understand your impatience to get your life back on track. You have not been well served by your medical advisors but perhaps they simply don’t know so much about vaccine induced PMR or even if it is the same condition. They will be being cautious in case the drug company gets sued for causing it and it seems to have happened a lot judging by comments on this site.
It is shocking to me that you have been given so little information about your condition and treatment. I would have liked to hope that research had moved forward on this, but as I say the vaccine induced condition might differ from the Polymyalgia we experience and they might be a bit cautious. Ellen Brokowich comes to mind here.
The saying is USE IT OR LOSE IT, so I would not advocate a wheel chair, maybe a rollator or or some similar walking support, you will get better if you go steady through this life changing diagnosis. Best wishes, Chrissie
Thanks Zeb. The confusing thing for me is that I take my pred in the morning about one hour after I wake up. But the morning when I wake up is the most pain-free time of my day. My leg aches start in the evening. But after a period of sleep they are fine. I don't experience the morning pain and stiffness like I did before I started the pred.
Yes! I thought that perhaps he could ask about it to his Rheumy. I see in you comprehensive reply you mentioned that you couldn’t use a cross trainer. Can you tell me why that would have been worse than short runs?
I had been considering hiring one until this recent aggravation of bursitis in the hip.
"It's more like I can't do long walks, or garden, or anything that taxes my leg muscles even 10% of what I used to be able to do before this disease (whatever it is) struck me."
You have a new normal and reading your post I suspect what you have done and are continuing doing is simply too much for PMR-affected muscles. You have developed DOMS, delayed onset muscle soreness, because of doing too much and you are adding to it by continuing to do more than you should before the DOMS has healed.
At 15mg the pain is the inadequately managed PMR inflammation. The pain you have now is DOMS, the pain that develops in muscles when used more than they are capable of.
That precipitate reduction from 40mg to 15mg was crazy and you have not been educated about the illness you have - the pred manages the inflammation, it does not change anything of the underlying autoimmune disorder that is continuing to exert its effect on your muscles. We have all been there and I know it is galling at your age BUT you have to get the inflammation under control and then start from scratch to build up your ability to do things. I was 51 when my PMR started, it built up slowly and wasn't diagnosed for 5 years. I skied regularly, I even spent a lot of my winter here in Italy so I could ski more, but even after starting pred every winter I had to start from scratch. I couldn't use the crosstrainer or bike to get my legs in trim for skiing so I started with not more than 3 very short runs, with rests on the lift between them which were essential. The next day I rested, it took a few weeks to be comfortable and do another run. If I tried to do more too soon, I knew about it and it simply wasn't worth it - it is very difficult to bale out half way down a run!
If you don't learn anything else with PMR, whatever the cause, you will learn patience, You have a serious systemic illness - if you had proper flu and tried to carry on as usual then something similar would happen. You can't fight PMR into submission, you do have to adapt. A wheelchair won't allow you to garden, they won't give you access to a lot of places.
I don't think an electric wheelchair is what you need - a change in mindset maybe. You will get through this and you will get back to relatively normal activities with some adaptations. Skinnyjonny was in a wheelchair when he was first diagnosed but the autumn before Covid he climbed Annapurna IV - same age as you.
Hi. Can you just say why you could do short runs but not use a crosstrainer or bike? I was thinking of hiring one until the recent bursitis. I’m keen to find heart lung exercise with as little effort as possible! I feel very over weight and running would not be a good idea. I’m not in line for new hips or knees, luckily but would probably need two new legs if I started running!!
What I am hearing you say is that is that my quadriceps aches are *not* PMR inflammation, and also *not* myalgia from the prednisone, but rather DOMS from pushing myself too much.
This may be true, but I really should stress that I am not "overdoing it" in any common sense use of that term. I am not exercising at all. The aches in the thighs come on like clockwork every evening no matter what I do. One time a few weeks ago I did a few hours of gardening and paid the price for five days. That's the one time I might have overdone it.
Now, after 5pm on an day of the week, I can't be on my feet for more than ten minutes without feeling the burn. In other words, simply standing up hurts. I'm not exercising. I'm not gardening. The only walking I do is from my office chair to the bathroom or kitchen and back. Occasionally a package arrives at the door and I bring it inside.
So when I hear you say this may be my "new normal," I can accept that, but I need to make sure it is correct. Because if it is correct, my presentation of PMR seems far worse than others here. Even you speak about doing light ski runs during your illness. There is absolutely no way I could do a ski run right now. I likely tore my hamstring tendons (in both legs) simply by walking. So please forgive me for being a bit cautious. If I have a severe presentation of PMR, I can accept that. I am not psychologically resistant to accepting this disability or the "seriousness" of this disease. I just want to know whether I am on the right course of treatment.
25mg of pred controls most of my symptoms (except what I have described in this post). If those symptoms are *not* inflammation, but rather DOMS, then I should be able to go down today to 22.5 safely, and monitor myself for any increase in pain. (I'm going to take my morning dose in one hour.) But if my symptoms are inflammation, then they will likely get worse if I go down to 22.5, and perhaps I should really be at 30mg.
But I don't know anyone here who is on this high of a dose, and my rheumy also has told me multiple times that she is concerned that I am experiencing symptoms even on such a high dose. It's the one reason she keeps looking for alternative diagnoses.
I am inclined right now to believe I have PMR, and that it is just severe case, despite what my rheumy says. I am inclined to believe my thigh pain is what you say it is; DOMS. But if this is true, it really is a severe case, and if I am going to go down to the river with my wife this summer, or hike some flat trails in the Sandias (our local mountain range here in Albuquerque), I am going to need a wheelchair of some sort, even for the shortest of distances, because right now I can't walk ten minutes without feeling like I'm going to injure my legs.
I just need to know if what I am experiencing on 25mg pred is within the range for PMR, or if I should be concerned (as my rheumy is) that something else might be going on.
"I really should stress that I am not "overdoing it" in any common sense use of that term."
You have a new normal - the rules pre-PMR no longer apply. You said yourself "And it comes on faster and harder if I do physical activity with my legs" We can only go on what you tell us.
I used my skiing experience to try to show I could no longer ski all day and had to build up the amount I did from a silly low level. You are at the begining of the illness - and you are probably still suffering to some extent from that early experience that took 5 days to recover.
You haven't been here long, there are plenty of people who struggled even at above 20mg to start with and there are several who needed 25-30mg at the start for "just" PMR. They did get to lower doses but I needed 20mg last year when I had a flare after having had PMR for 17 years. I'm only on less now because I am on Actemra. Someone has wondered about LVV - it is often resistent at first but without looking in the right place your rheumy isn't going to "see" that. Has she done IL-6 levels? PET-CT is the best option for PMR but you are already on pred which interferes but your PMR symptoms as such are managed. Some of us are never pain-free. It is also possible to have fibromyalgia as well as PMR.
A retrospective study found about 5 different responses to pred - by no means all are the same. One version is that the response takes a higher dose and then tapering initially is hard but later it goes better. Skinnyjonny was in a wheelchair and the only exercise he could do at first was in the hydrotherapy pool and very gentle. He thinks it was that that allowed him to get back to running after about 18 months. This disease works on months and years - not days and weeks.
Oh sferios. I feel for you. PMRpro is right but you must keep an open questing mind. It is hard to understand and to accept how reduced one is. I am still trying to get things right as I start year 5!
Hi sferios, agree with PMR pro. Sounds very much like you are overdoing it and paying the price. A good place to start for information is Kate Gilbert’s book: PMR/GCA a Survivors Guide. You can still do gentle exercise (walking, light gardening) but need to scale way back. Do the activity for a short period of time then stop and rest. Sitting for long periods of time is also not good. It needs balancing. This is not the time to push yourself! I know, I was diagnosed with PMR at age 52. I learned the hard way that my life had to change. One big lesson was learning to say “no” in order to take care of myself.
Not only does your activity have to slow down, so does the Pred taper! This disease lasts 2-5 years and it decides when to go into remission, not you or your docs. So you may as well strap in for the ride. Put your energy into finding out what you can about the disease and about managing Pred and it’s side effects.
Sorry, but I beg to differ. I've had it for 13.5yrs so far and it's showing no signs of going into remission yet. Furthermore, PMRPro has had it for 18 years and is still under the cosh. So don't just think it will automatically go away within 5yrs, it might not, and you have to be prepared for the loooooooong haul, just in case.
you are so right, I should have said on average. I have been on the journey for 12 years. There is a subset of people who might have it for life (which I think I may be one), however that is a smaller number and I don’t want to have someone newly diagnosed getting very discouraged right at the start.
Thanks PMR2011. I have read Kate's book. My sister bought it for me. It's what pointed me to this forum. I am so grateful to be here. I am inclined to believe PMRpro. See my response to her above. Thank you again. ❤️
Hello sferios!What a difficult time you are having at the moment.
I know very little as my pmr journey is new to me but I understand how frustrating and annoying it is not to be able to do things especially in the garden 🙃
I do think there's a tendency in me to want to try too much.
I think the little exercise is better for now and build up slowly.
It seems that each of our pmr has a shelf life and it will stop when it's done.
Adjusting is the only way and not allowing what our old norm was to get us down.
Hope you get the help you need from your gp and rheumatologist 🙂
And perhaps try new fun things you can do together.
Hi WLTR. I love your name. I have been a runner since I was a teenager. I have an appointment at the Mayo Clinic in ten days, so hopefully I'll get a better rheumy there. The only problem is that it's expensive. I'm currently fighting with my insurance company because they don't want to pay for "out of network" providers. Wish me luck! Also, has the pred helped you? What dose are you taking?
😊🤗Thank you! Hopefully we will both be running sooner rather than later!I started on 20 mg prednisolone at the end of March. Was also prescribed omeprazole but have decided to give it a miss. I can change my mind if I feel differently. Yes pred has changed my life to what it was. I can dress myself and walk now (not far) and I can sit and watch my family and hub run parkrun. I'm able to potter around and do little things in the house. It was totally the best decision for me. I'm resembling more of the old me.
I'm not better. It's early days. But I am more optimistic about being able to extend my little walks and hopefully will be able to extend the distance soon.
I'm sorry you are having extra stress with the insurance. Hope it's sorted soon.
Best wishes with rheumatology. Hope they can help you with all your concerns.
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Now I know why I am feeling so Ill.
Am I just being a wuss?
I am a new to all this...
I am going round in circles trying to decide what do for the best!
I am done. I am also done tappering
