Hi everyone. I'm 53 years old. My onset started in January. I can't seem to taper below 25 or 30 mg of prednisone without experiencing symptoms. Is this normal? I am worried that I may have something worse than PMR because it seems most people only need 15 mg or less.
My symptoms match PMR; bilateral proximal limb pain. Shoulders, neck, hips, thighs and hamstrings. Sometimes radiating into my biceps also.
But I have never had a high ESR. Just a high CRP. I did have mildly high CK, which caused my rheumy to think I might have myositis, but my MRI showed no muscle abnormalities. Just tendinosis and some small tendon tears in my hamstrings near the insertion points. So my MRI is more consistent with PMR.
I just want to know if needing 25 or 30 mg of prednisone is normal for being two months in to this disease. Or should I be worried that my rheumatologist is overlooking something?
Thank you. - Emanuel
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sferios
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Have to say if you have PMR - and certain aspects sound very like it - your Rheumy has an odd way of treating it. 40mg is a high starting dose [although it does seem more usual your side of the pond that elsewhere] - usual recommendation is between 12.5mg to 25mg. .. sometimes as much as 30mg.
Not sure how long you were on the initial dose, but reducing 10mg a week is bonkers - which may indicate your Rheumy doesn’t really understand the illness…and how it works.
It’s not a matter of take the initial high dose, then reduce as quickly as possible.. it’s staying on the initial for long enough to clear out the built up inflammation - and then reducing [in a timely manner] to find the LOWEST dose that gives you the same level of relief the initial dose did… but are you doing your bit as well? You have a serious systemic illness which needs treating with care - the steroids only deal with part of the problem.
Thank you. That article was helpful. Let me explain that I was initially put on 40mg prednisone by the emergency room doctor. Because of my elevated CK levels, he thought I had myositis, which requires a much higher dose. Then I saw the rheumatologist a week later. She wasn't sure the myositis diagnosis was correct, because my CK was only mildly high. She wanted me to taper 10mg per week to "let the disease declare itself." Now, this might also have been bonkers. But it gives a little more context.
The article seems to indicate that 25 mg may be withing the range for initial onset PMR. I really just want to know if it is a correct decision to assume this is what I have, and treat it as such. If so, I will go down 10% a month and see what happens. Thank you again. You're the first person to respond to my very first question here. I really appreciate it.
You’re welcome… and yes I can now see why the Rheumy wanted you to reduce quickly… higher doses of Pred can mask a lot of other issues…
Very often other things have to be ruled out before you finally get a diagnosis of PMR, unfortunately there no single test to confirm ‘you have PMR’’… more’s the pity.
Just come back anytime with queries etc…and hope you get a definitive diagnosis …
I was started on 15mg but that dose had no effect at all and neither did 20mg. 25 was the magic number with almost instant relief. Stayed at 25 for a few weeks and have steadily reduced down to 4mg, over just under two years, with, perhaps luckily, no flares, just stiff and slightly painful hands that started at 4.5mg (I don't think the pain and stiffness is down to PMR, just think the Pred was masking the problem).
The 2015 guidelines say the lowest effective dose in the range 12.5 to 25mg, exceptionally 30mg. But some people do need more for some reason, but above all, you need to stay at the starting dose for long enough to let it work and that means a month at least. It is too late now to do a PET-CT which would have been more conclusive than an MRI.
I think she would have been better working from the 40mg and accepting it was probably PMR but hindsight is a wonderful thing.
Thank you. May I ask another question? Basically, I want to know whether I need to be completely symptom free the entire time it takes to reach the remission stage. Or is it okay to have mild symptoms? I have read everywhere that "see-sawing" is not good. But what about mild symptoms? Everyone wants me to be on the lowest dose of prednisone possible, but how do I assess whether the dose I am at is appropriate? Is it when I experience no symptoms at all? Or is it when the symptoms are just very mild.
Right now on 25 mg they are very mild (achiness and slight burning sensation in my thighs mostly, but no more upper body symptoms in my shoulders and neck like I was having at 20 mg). Are thee mild symptoms not good to have? Do I need to be completely symptom-free to eventually achieve remission?
This is the mist important question I have right now, because I'm trying to determine whether I should go up a little bit more on the prednisone or not. When I was at 30 mg, I had no symptoms at all, but at 25, I fill the tiniest bit. I don't want to take more prednisone than necessary, but what *is* necessary, and how do I determine that? Is it no pain at all, or just pain I can live with?
Thank you again for answering my questions. I haven't had anyone to talk to who understands except my rheumy she is hard to get a hold of.
You may never get to be totally symptom-free, some people don't. But the yardstick is the best you can get with the starting dose and the markers as low as possible and stable. Then when you start to taper, you should never feel worse at the end of the taper step than you did at the start. You taper until you get to a dose where the symptoms are not quite as good and go back immediately to the previous dose where you were good. Some pain that is stable is OK but not if it worsens, even very slowly, over time. There is no virtue in being too low just for the sake of it. If it is the PMR inflammation causing it, each little bit of left-over inflammation will build up - the dripping tap analogy we use - until you are back where you started. Any increasing pain is a sign you are too low.
Some pain that is stable is OK but not if it worsens, even very slowly, over time. There is no virtue in being too low just for the sake of it. If it is the PMR inflammation causing it, each little bit of left-over inflammation will build up - the dripping tap analogy we use - until you are back where you started. Any increasing pain is a sign you are too low.
This is important for so many of us to hear!!! Great advice.
What a kind person - NOT! There are things to tough out -but not returning pain due to increasing inflammation in PMR. That's like King Canute stopping the tide ...
Needless to say, I haven't listened to them. If I do start to feel pain in my neck (the first place I feel either a flare or steroid withdrawal), I take a Tylenol, and the pain has gone away, so I haven't had to increase the Prednisone level. DSNS has worked so far for me as I continue to taper, currently from 5 mg to 4.5 mg.
Wow!!! There are so many medical professionals who need more education on PMR and GCA. I think the issue is often that they don’t want to listen to their patients and learn from them.
Wowza! Lucille you may have just enlightened me tremendously. I have been using my neck pain as a guide to when I need to go back up on my prednisone during a taper. But I have never tried giving it a week (like I do for my leg pain). For some reason I have been more afraid of the neck pain. I always thought to myself that it was more related to early signs of GCA, and that I didn't want to allow that to go on, even for a minute. But maybe that's wrong. Maybe I should wait a week and see if the neck pain goes away before being too afraid.
I usually notice the neck pain when I wake up. I’ll take my prednisone and wait a few hours, and if the neck pain doesn’t go away, I’ll take a Tylenol. If it goes away, then it is most likely due to steroid withdrawal. If it doesn’t go away, I’ll take another Tylenol about 6 hrs after the first one and see what happens. For me, so far, it has stopped the neck pain.
When I was reducing in the fall of 2021, as my mom would say "like a bat out of hell", I started to get neck and back pain, but just figured it was due to sleeping incorrectly. Because the pain was not that bad at all, I never realized it was from going too low on prednisone and the inflammation building back up. (I hadn’t found this wonderful group yet!) Finally, the pain got back to where it was just before I started taking prednisone, so I finally figured out that I was having a flare (which Tylenol does not help at all).
I now listen to that "niggle" in my neck. It is something I monitor closely as I taper below 5 mg.
May I please ask another question? I'm an "atypical" case because my ESR has always been normal. Prior to prednisone my CRP and CK levels were high. But then they have always been normal (except one other time my CK was high). This is why they aren't sure if I have PMR or myositis. But then my recent MRI showed no muscle abnormalities so my rheumy ruled out myositis. Is that accurate? Can an MRI definitively diagnose myositis? Lastly, this all started after my covid booster, so what my rheumy is now saying is I have some type of "PMR-presenting, vaccine-induced, autoimmune myalgia."
That's clearly not very specific. And because I was put on 40 mg prednisone right away, could this be something else? And how can I figure that out?
I actually have an appointment at the Mayo Clinic on April 27th. I have to pay out of pocket for that because my insurance won't cover it. I am hoping they have more expertise in these things. But I want to go in armed with all the information I can. If I have something worse than PMR that the prednisone is hiding, how can they tell? What should I be demanding in terms of diagnostics?
Or if there isn't a way to know for sure and we assume this is a "PMR-presenting" autoimmune illness from the vaccine, should I just continue with the prednisone treatment? And if so, when should I start to be concerned that it might be something else? And what should make me have those concerns?
For example, let's say in a month I go town from 25mg to 22.5 mg and my symptoms get worse? Is that an indication this is something worse than PMR?
I know this is a lot. It was actually more than one question. I am so appreciative to have found the PMRGCAuk website and this forum, and to have people who can answer my questions. Thank you again.
They are very keen to label all sorts of patients as atypical - until at least half are told that at some point, It doesn't mean you are particularly unusual, whatever a lot of doctors think.
If it looks like PMR and responds well to pred and nothing else, then you continue with pred. But you have to go about it correctly. Once the inflammation is under control the doctor should titrate the dose to find the lowest dose that works for you - if you still need a very high dose after going about it in a sensible manner, something else needs to be considered. PMR is trigger by something - and it can just as well be a Covid jab as a flu jab or a shingles jab or anything else, There really isn't anything that special about Covid jabs and the immune system. A lot of Long Covid cases are probably some regular autoimmune disorder or other - including PMR. PMR isn't the disease, it is the name of a set of symptoms caused by an underlying disorder and there are quite a few. And that is what he is saying,
My Rheumy cancelled my muscle biopsy after the MRI showed no evidence of myositis. Was this incorrect? The MRI was supposedly "to pinpoint the location for the muscle biopsy." But then after the MRI came back clean, she changed her diagosis once again, back to PMR. She told me I didn't have myositis. Is this correct?
She based the initial assumption of myositis on two elevated CK levels, 604 prior to starting the prednisone, and 459 one other time... high but not exceptionally high).
Also, since I started the prednisone, my CRP has been perfectly normal. And my ESR has never been above 2, the lowest number on the scale (every time). I suspect this is also why she initially suspected myositis. PMR is supposed to have high ESR. (Also I responded so well and instantly to the 40 mg prednisone prescribed by the emergency room doctor.)
She had me taper 10mg a week "to see what happens" and "let the disease declare itself." When I got down to 20mg it was terrible.
Maybe this taper was too fast for whatever disease I have, but what is confusing for me is the fact that here I am at 25mg after two months on prednisone, and I still cannot go lower without pain. This seems like a high dose compared to other people's experience with PMR, and it makes me worry I have something worse (though I cannot find any other disease that matches my symptoms).
I am a bit relieved to read about the experiences of others here who also have needed higher doses. Maybe the only reason I got stuck is because my rheumy tapered me too fast in the beginning. Maybe if I stay here at 25mg for two weeks and then do the slow taper everyone talks about, I can get down to 10mg in 2-3 months.
"Levels of CK can rise after a heart attack, skeletal muscle injury, or strenuous exercise. They can also go up after drinking too much alcohol or from taking certain medicines (certain abx and statins) or supplements. "
It isn't specific but a raised value alongside muscle weakness is likely to make them suspect myositis - but muscle PAIN is not common. And your levels were relatively low, over 1000 is more likely with myositis. So once the MRI didn't suggest myositis, they will have realised they were on the wrong track there.
You are looking too far ahead - no reduction step should be more than 10% of the current dose and you need 3 weeks at each dose to settle down for success, I would be very surprised if you get to 10mg in 2-3 months. I took over 4 years to get reliably to below 10mg. It is very common for a theumy to decide they want to get the disease to "show itself" or for a patient to have a scan where pred interferes, force them to reduce quickly and afterwards they struggle to get things under control.
I was put on a 6 week taper of 15/10/5 and stop, I responded in 6 hours to 15mgm was fine at 10, still fine at 5mg. SIx hours after missing the first 5mg dose I was in agony, in bed in tears. I didn't get back to 5mg for literally years and it only lasted 18 months before I relapsed. We see it all the time - no idea why, but it happens. I had another attempt to get low to have a PET-CT scan just at the start of Covid, For the following 2 years I needed far more pred, I'd been OK at 11mg, I was back to above 15mg. There were other complicating factors, my husband was very ill, but I could NOT get lower.
OMG thank you sooooo much! I am learning so much from you. I feel for the first time since this started I am beginning to understand what as happened over these last three months, from the disease to why my rheumy did what she did. (She doesn't explain her reasons for her decisions.)
To hear you say that other rheumys have forced patients to taper for a scan just validates what happened to me so much. This is exactly what just happened! I was told specifically that I needed to "be in pain" and to "suffer muscle damage" in order for the MRI and biopsy to effective (for determining the subtype of myositis I supposedly had.)
This was the second time in two months she had me taper way too fast. The first one was to "let the disease declare itself." I don't even know what she was trying to discover with that. I went into agony and then immediately went back up on the pred. Then she asked me to do it again for the biopsy. Now that it's pretty clear I have PMR, I'm going to do the DSNS technique.
This forum is amazing! You are amazing! I'm crying now (could be the prednisone). I have already donated to PMRGCAuk and I plan to give back to this community and help others when I feel I have more knowledge and experience. THANK YOU for taking the time to answer my questions in such detail.
"Then when you start to taper, you should never feel worse at the end of the taper step than you did at the start. " "Some pain that is stable is OK but not if it worsens, even very slowly, over time." V helpful, thank you. Even though it's obvious, being new to PMR I hadn't thought about it in that way.
My severe inflammation started suddenly on Jan 14, 2023. I am now on 60 mg/day of Prednisone. Your case does not sound extremely unusual. I am 64 years old.
The doctor's diagnosis is tentatively PMR with possible Giant Cell Arteritis. Imaging has not confirmed the arterial swelling associated with GCA, but several of my symptoms are more consistent with it.
Diagnosis will always be a guess, based on reported symptoms, blood tests, imaging, and physical exams, of which I've lost count.
My initial CRP wes 346 mg/L, which is unusually high. ESD was just under 100 mm/hr.
I started on 10 mg of Prednisone on Feb 3rd, then in a few days went to 20 mg/day.
However, by March 2, the inflammation was so bad, I began having double vision and had to go to the Emergency Room, where after a 12 hour medieval ordeal they confirmed no stroke and no inflamed arterial signs of cranial Giant Cell Arteritis.
The ER doctors put me on 60 mg/day of Prednisone on March 2. Within days, my inflammation markers - CRP and ESD - went to normal for the first time since mid Jan.
I changed rheumatologists to one I thought had my best interests more centrally in their view.
I began Actemra (tocilizumab) weekly injections yesterday and now will taper the Prednisone fairly quickly. I am scheduled, assuming no relapse, to be down to 20 mg of Prednisone by May 6 and then to 10 mg by May 27.
Assuming no relapse, tapering then goes more slowly and ends in a 6 month period at 0 mg on Oct 7. The weekly injections of Actemra stop then, too.
I began Actemra (tocilizumab) weekly injections yesterday and now will taper the Prednisone fairly quickly. I am scheduled, assuming no relapse, to be down to 20 mg of Prednisone by May 6 and then to 10 mg by May 27, Assuming no relapse, tapering then goes more slowly and ends in a 6 month period at 0 mg on Oct 7. The weekly injections of Actemra stop then, too.
No wonder you don’t think sferios’s case is unusual compared to yours! Yours sounds very GCA ish to me…..and as for your comments regarding tapering, good luck with that - there are a lot of assumptions in your comments…. And honestly it’s unlikely that PMR or GCA will be in remission by October this year. Hope I’m proved wrong…
Aware. "...there are a lot of assumptions in your comments". Maybe read my post more carefully before critical comments like this. Not very encouraging are you?
Tapering, as I state twice, depends on no relapses. I also state that that the diagnosis is a mystery based on observed symptoms, and that I may have GCA, but no one knows, and the doctor's diagnosis is at best "tentative".
Almost ALL of what I state are actually factual experiences.Speculation about the true source of my inflammation is left only to my stating what the doctor's opinions are.
Sorry that you feel that way, and was no criticism of you personally, but trying to point out, that over 10 years of being on this forum [and in my case personal experience of GCA] the possibility of achieving the timescale you quote, whether yours or your doctors is unlikely - and will lead to disappointment and frustration.
We have read too many posts of patient being given unrealistic tapering schedules by their over optimistic clinicians - only to fail to comply, and being left to believe that it was their fault.
As I said, I hope you manage to achieve your goals, but just be aware you may not... better to be forewarned than lulled into a false sense of security...
P.S. I never flared with my GCA, was on Pred only [at the time TCZ had not been authorised in UK for use] - but my taper was much slower....
Of course I agree that the tapering schedule seems extraordinarily fast.
But it is actually the same 6 month tapering schedule published in the NEJM trials of Actemra for GCA treatment in combination with Prednisone.
Ignorance and fear are also not good places to lead people to.
A link to the NEJM paper is below, and the key graph is attached. Of those taking weekly Actemra injections, which I am on, 80% were successful tapering on the schedule without relapse out to the length of the trial, which was 1 year. The taper begins quickly, but then slows down dramatically once 10 mg/day of prednisone is reached, and is completed at 6 months.
These are facts that each person can interpret in their own way.
Emotionally, I hope I am in the 80%, but clearly realize I may not be and that PMR/GCA relapses are very common. Anecdotally, many need Prednisone for much longer at lower doses.
However, I've been at 60 mg/day for Prednisone for the last month, as I stated in the original post. Rapid tapering from that level is the rule rather than the exception. Side effects become a very serious concern at this level.
And as I stated TWICE in my post, the tapering schedule success is dependent on no relapses. A realistic assessment is important. Hence my original post was factual, and I left it up to the OP to assess how they felt about those.
My emergency room double-vision experience, which I described in my original post, made it very clear to me and I think the others that bothered to read my post with an open mind, that that there are serious concerns about underdosing with Prednisone.
Yes, the dangers are very real - and for those with possible GCA, include risk of stroke and blindness.
NEJM published Prednisone tapering schedule in trial of Actemra/Prednisone GCA treatment
When I started on TCZ for GCA it took 2 months of weekly injections before I felt better and could taper Pred. Do be careful of tapering too fast and overshooting the mark.
I have been on TCZ nearly 4 years. Off Pred for 3 as it took a full year to taper and let my adrenals wake up. Came off TCZ a year ago and GCA reared it’s head again! Currently on every other week injections. As others have said, there is a wider range of how long the disease lasts than our medics lead us to believe. Most on here have found the conservative approach to work best.
I agree with DL - if this is GCA you absolutely won't get to 10mg by the end of May. And I'd be surprised if it succeeds if you have PMR though you might, But whoever is managing you doesn't have much of a clue about PMR. No-one I've ever come across would start a patient with markers like yours on 10mg which is skirting the levels needed for anyone. But markers like that are more consistent with GCA and would get at least 40mg to start.
Our comments are based on years of experience and thousands of patients on the forums. Reducing the dose at that speed isn't allowing any opportunity to know the dose you have got to is still enough and managing the inflammation. YOU may think we aren't encouraging - WE see it as realism and heading off disappointment if it doesn't work. Most of GCA/PMR diagnosis is a clinical decision - on the basis of signs and symptoms. Even a biopsy isn't a reliable negative diagnosis - that just means they didn't see what they look for and there are several reasons for that including it isn't affecting the temporal artery they look at.
Tocilizumab doesn't work immediately - my rheumy finds it is better to allow a few weeks at least before starting tapering and even then go slowly. He has worked with it extensively and in the trials as well. In the clinical trials it was found that half of patients don't get off pred altogether because GCA has at least 2 other mechanisms that may cause inflammation and they don't respond to tocilizumab at all as biologics are so specific. We have seen so many patients setting a date to be off pred - and being disappointed. It is also very unusual for 6 months of TCZ to be enough to allow the GCA to go into remission, even the UK allows 12 months.
I hope it all goes they way you think. We just want you to be prepared that it doesn't always.
As I said in my original post, I changed rheumatologist after about 3 weeks of treatment. The original 10 mg dosage was from my PCP, who was unfamiliar with the disease, but at least was able to make a diagnosis after 3 weeks of intense pain (feeling of broken bones 24/7 throughout my body.)
This was quickly changed to 20 mg (after 2 days), before I even saw a rheumatologist, The rheumatologist I was originally referred to turned out to neglectful and in over their head, so that I ended up in the emergency room with a possible stroke.
The ER doctors prescribed 60 mg, and I changed rheumatologist at that point.
Rapid tapering from 60 mg is the rule, not the exception.
Fear and ignorance are also not good places to lead people emotionally. We're all adults here.
A realistic assessment of the facts is what is needed. My original post stuck to those.
I am just seeing this but since you keep saying the same thing I feel the need to respond...I am one of the adults on the site. I think.I can comfortably say most of "us" would tell you the one thing you're wrong about is these women DO NOT LEAD PEOPLE WITH FEAR AND IGNORANCE. In fact the opposite. I came here completely lost and very very sick trying to understand how this differed from my other pain and fatigue producing autoimmune diseases. I am like the person writing this post....a year of 30 mg of pred. I have learned so much from these volunteers and everyone who tells their story. I have received lots of TLC. The reason to post is to.ask questions even when they.seem stupid. You want clear honest info where it exists and personal stories to add info and "color" to the experience. I read these posts several times and they were doing their job...."what is the norm?" You might benefit.from someone saying "that would be great BUT...." It is not to cause fear at all. Information can help reduce fear.
If it goes according to plan you can come here and we will celebrate with you. If not then we will support you if you need it.
Also just an aside...please remember we are sick, spaced and tired....I am talking about the general folks...not volunteers. I.don't know what post you are referring to....I read threads.... I can't search out older posts...so as we all do.you might answer something or remind folks of what you said before. But pointing back to it doesn't help. If someone doesn't get what you are saying, just clear it up in the current writing.
I.really.hope you are able to meet your schedule. I would LOVE TO BE OFF PRED.....I start infusions of Actemra Monday. Now I 🙏. I need to wait and see what will happen.
Good luck with your journey. I hope you.can take my comments as intended. I hope you feel stronger and healthier.sooner rather than later. Happy healing.
Started on 40 mg pred 18 dec 2018 Started Tocilizumab /Actemra weekly injections 19 feb 2019. Dropped in stages ( in my profile) to 10mg by 20th April 2019, down to 5mg by 28 June 2019, 0 mg by 27 September 2019 All along side weekly Toc injections. Carried on with injections untill the last one in Feb 2020. It still took well over a year to feel normal but no relapse has occurred (as yet). I know this may not be the norm and I have been very lucky, so keep realistic with the help of this brilliant forum. I wish you the best of luck.
By the way, for GCA, which a closely related disease to PMR, higher initial dosages of Prednisone LOWERED the total time needed to taper to 5mg. It's not good to start lower than needed.
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