I did some research on my own after having these pains in my shoulders, upper arms, hips and lower back. Getting out of bed, turning over in bed, getting up from a chair, or reaching for something was very painful. I’ve been having back issues with a slipped vertebrae for about 2 years. I’ve had 3 epidural injections and an ablation. When returning to the orthopedic doctor 2 weeks after the ablation, I had started having these other pains. I saw a PA until I could get an appointment with my doctor. I was given a prednisone dose of 30 mg for the first day, decreasing by 5 mg a day for a week. By bedtime that night, my pain was gone. As the dose was reduced by 5 mg a day, my pain came back. I had some prednisone from several years ago, and I have been taking it until I can see my primary care doctor. It is keeping me almost pain free. . I am waiting to get an appointment with a rheumatologist at this time. Any opinions on whether or not I have PMR?
Do I have PMR?: I did some research on my own after... - PMRGCAuk
Do I have PMR?
Certainly sounds very much like it… from the symptoms you describe and your reaction to the Pred - initially sorting issue and then return of symptoms as you reduced.
Just as a matter of interest what dose are you self medicating on?
Info on PMR etc - and do let us know how you get on with PCP/Rheumy-
healthunlocked.com/pmrgcauk...
I’m not sure if you got my reply today, but I was on 15 mg for the past few days. Saw my PCP and he did blood work and wants me back in 2 weeks. He agreed he thought I have PMR. He said he would probably refer me to a rheumatologist when I go back. He said to try 10 mg and see if I can manage on that. Thanks
15mg is usual starting dose dose, and whilst you may feel okay on that - a drop to 10mg is probably too much [certainly if PMR, might work for other diseases] so just be aware it’s likely to flare again. But it will be more ammunition in proving it is PMR.
All fits the pattern and it isn't uncommon for someone to realise a short course of pred sorted the pain at higher doses, only to return as they reduced. Where was OK, where not?
It seemed when I tapered to 10, the pain started returning.
I see your GP suggested going back to 10mg for a start - if that doesn't feel right, try going back to 12.5mg and work from there if he will let you. Sometimes you have to have a clear out before the lower dose will work. The trouble is that when you reduce the dose so fast it isn't as clear where you crossed the border between OK and not OK because it can take a day or two for the inflammation to get to symptoms level. It might be at 12mg, it might be 14mg and in that case 10mg won't work this soon.
Thanks. I found last week when I dropped to 10 from 20 for about 4 days, the pain was getting worse again. Do the tablets come in 1 mg? What I have now are 20.
Yes 1mg, 2,5mg 5mg and 10mg according to this-
20mg is useless for managing PMR - you have to be able to taper in small steps and your GP should know that. But a drop from 20 to 10 was always likely to cause a problem,
Speak to a pharmacist - they should be able to tell you exactly what they can access easily. And if they have to do a bit of work, that's what they are in the job for!
I will also caution if you are in the US… if you are already on prednisone before you see a rheumy, they are going to resist giving you a dx because they cannot see your symtpoms. Plus any bloodwork they run will probably not show the results they are looking for because the prednisone masks it. There are a dozen blood tests that should be run to rule out everything else before you get a PMR diagnosis. Did they run any of those tests? It is important to get those tests or you may end up with a fight with the rhuemy over a diagnosis.
I had thought about that also, since I have been on the prednisone for about 10 days, and about 5 days before with a short break. I think they were going to check for CRP and sedimentation rate. And yes I’m in the US.
If you don't have much in the way of symptoms because you are on pred, then the CRP and sed rate are likely to be artifically low. They are only really meaningful at the start before pred and even then, some people don't have raised levels and some rheumies will use that to claim you don;t have PMR>
as you already know the symptoms sound like PMR, but I wouldn’t self diagnose, leave thwt for the rheumatologist when you see him or her, in the meantime appears to make sense to keep the pain and inflammation under so degree of control. Good luck , sue
Thanks Sue, I was in so much pain, I had to do something. I saw my primary car Dr because I checked with the closest rheumatologist to me, and the first appointment was January of next year!
I’m so sorry that it takes that long to see a rheumatologist..stay in touch with this group, so many are there to help you
Thank you!
You need me I shall be here for you. So many leave the site once they are off prednisone, but I hang around in the background to tell of my journey and help in any way I can…sue
Good job some of us do…..😊
Dear DorsetLady,
I apologize for writing to you directly--- but I was not sure where was the best place to post my need for advice.
I would like some advice if possible--- I was visiting my family for a month just after I had just began a taper to 2.5 which seemed to be going well. I did a lot of walking because I did not have a car. As the weeks went by I started to feel pain in the muscles around my hips and difficulty standing up--- which was very evident after sitting and not when I was walking. At first I thought these symptoms would go away but then they spread to one shoulder and all these symptoms did not relent. As soon as I got back I was able to see my GP who ordered many tests which turned out to be normal but my sed rate 23 and my crp 4 although within the normal range, were unusually high for me. My levels are usually are around 11 and 2.
In one of the articles on this forum addressing a flare, there was a suggestion to add 5 mg to the current dosis and stay there for 7 to 14 days. If after doing this for two days, the symptoms almost disappear by adding 5 mg, is there a danger of a rebound if one stops the 5 mg. and begins reducing before the 7 days? Should I stop at 3.0, 3.5 or 4 mg. ?
I am unable to reach my reummy for a few more weeks. Because my initial diagnosis was CGA, i was concerned that not responding to possible PMR would make me more at risk of a relapse of CGA. Your feedback is really important to me.
Thank you so much in advance!
The idea of the flare protocol is that because you are only on the increased dose for a short time you can safely drop back down to just above previous dose without having to taper.
But would say you probably need longer than 2 days - 7 is much better, although you can do up to 14 days if necessary. You need to ensure you have your PMR back under control fully… otherwise you do risk flaring again.
However, if you really think you want to reduce earlier, then maybe step down to say 5mg for a week, then to 3mg - and stay there for a few weeks before you restart taper proper.
Unfortunately you won’t know what works best until you try it… but trying to rush things very often doesn’t. If you don’t have GCA symptoms- then I would say it’s just your PMR that grumbling…but with GCA in the background that’s another reason to make sure you have got everything back under control.
You have put this on the open forum in another post - but as you have replied to me I’ve seen it, but like PMRpro I do save every post, and a few others will also read it.
If you raise a new post then everyone will see out, or if you want you can send me a Chat - then only I will..
Dear Dorsett Lady, I am so grateful for your prompt reply and for the important information you convey. I will stay on 5mg. for at least a week -- so far so good!!
Again many blessings!!!
I will try to post in the open forum-- I have posted in the wrong place in the past-- but I want to learn--
You have posted on open forum, but in an existing thread, but now see you have raised your own post- so good. Will copy my above reply there…
The location of the pain sounds like PMR as well as the relief you get from Prednisone. When I first started having the pain, I lost a lot of weight. I could eat almost anything and still not gain. In fact, the weight loss was the only thing that came out of this awful disease.
Did that accompany your pain?
I’m afraid I wasn’t losing any weight! And I started the prednisone less than a month after the PMR started. Now I have more appetite and I’ve gained a few pounds.
Take avoiding action - better prevention than cure! Cut your carbs ...
I’m trying to do that more now. My husband and I went on Keto about 5-6 years ago, but I think my body metabolism has been adjusting for the past year. It’s been hard since to keep off the pounds. I’m about 7 over what I would like to be.
Really keto or just low carb? When you are on pred it is almost impossible to maintain ketosis as the pred triggers the liver to release random spikes of glucose into the blood from the body stores in liver and muscle which does sabotage things a bit!
I don’t think I was ever really in ketosis, but just very low carb. Now I’m finding it hard to be satisfied with the low carb foods. The pounds had started creeping back on before I started the prednisone.
You probably need more non-carb food to still the pred blood sugar rollercoaster pangs. Hard to resist when the blood sugar level drops so reducing the carb injections should help.
I am in San Diego, and it looks very much like PMR from my experience.
My initial health flag was low red blood cell and hemoglobin count at a regular yearly physical / blood work check in June 2022. About two months later I developed soreness in my upper legs and one upper arm. The blood work results had led to my GP prescribing a CT scan which was clear. A hematologist then worked with the GP and did extended blood work which was inconclusive in determining the low blood cell counts.
After 4 months the blood numbers hadn't changed so the hematologist ordered a bone marrow biopsy which was all clear. At this point the hematologist referred me to a rheumatolgist as none of the tests had indicated a source of infection or issue that was causing the low numbers. The rheumatologist suspected PMR as the soreness symptoms had not changed, and his blood work showed a CRP of 10 and Sed Rate of 65. He also had ordered a PETCT scan which was all clear. At this point in January 2023, he diagnosed PMR and immediately put me on 20mg of prednisone a day and within two days all symptoms were gone. I stayed on 20mg through March, 15mg in April, then 10mg for May, June, July.
I would meet with the rheumatologist each month after blood work and the CRP numbers have been consistently around 1 and Sed Rate in the low to mid-twenties. Since I have not had any symptoms then I meet every 3 months with the rheumatologist and review blood numbers. I have been reducing the prednisone level by 1mg a month as no symptoms and I am now down at 3mg a day. My red blood cell and hemoglobin count took about a year from the original diagnosis date to get into the normal range.
In summary I had numerous blood tests, CT scan, a bone marrow biopsy, and a PETCT scan to try and find the source of the infection the body was fighting before PMR was diagnosed.
The rheumatolgist has been very conservative in his approach in reducing the prednisone amount. It seems to me from reading some of the other posts that large sudden changes in the dosage levels can cause problems.
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