New to PMR and wondering about prednisone dosage - PMRGCAuk

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New to PMR and wondering about prednisone dosage

Richnroo
Richnroo

Hello, this surely seems like an informative group! I’m sure someone out there will be able to give me some input as I have yet to meet anyone personally who suffers from PMR so I feel I’m kind of going it alone. I’ve been on prednisone for a little over a month having worked my way down from 60 mg to 20 mg. I realize the 60 was a high starting point but my doctor was working to get me functional as the onset was so acute and severe and left me almost unable to walk. Anyway, the prednisone was like magic. All the way down to 30 mg. I’ve now been on 20 mg for just under 3 weeks and wow. I do not feel nearly as good. I just returned to work ( I’m a nurse but fortunately have a desk job) and I’m exhausted. I’m stiff and sore, even before I started back to work. My thighs are very painful and that heavy feeling has returned. So my question is this..... do I ride this out at the 20 mg and see if there’s improvement? 20 mg seems to be the upper limit and I’m not sure I should go higher. But I don’t want to risk back sliding either. Am I needlessly putting myself at risk by tolerating the increased symptoms or did I just have a false sense of security because I had been on such a high dose? Thank you to anyone who may be able to chime in! ( I do see a rheumatologist but not until the end of next month)

33 Replies
oldestnewest

The more common PMR start dose is anywhere between 25 mgs and 15 mgs. I wonder if you would do better on 30 mgs as it was your last comfortable dose? I think I would return there to settle the symptoms before anymore tapering. I think your rapid descent has probably caused most of the problems. We advocate a slow taper of not more than 10% of your dose. The very act of getting ready for and going to work will cause stress on your body and mind even though your job is thankfully desk based. Are there any other things you can negotiate with your health and safety/ HR people that will make your working life easier? The average duration PMR is actually 5.9 years, so there is plenty of time to get this right. The aim is to get to the lowest possible dose that controls your symptoms.

I recommend Kate Gilbert’s book on PMR available on Amazon. It gives you a better picture of the whole PMR experience.

The people on here are happy to advise on specifics, based on their experience and research.

Thank you so much for your quick reply! In my heart I’ve felt like 30mg was the right dose for me at this time, but it just seems so high and I’m worried about not doing this right. I’m not sure what my doctor will think about that, but maybe I don’t have any choice but to try. I think maybe I’ll go back to the 30mg until I’m mostLy asymptotic like I was and then go to 25 mg instead of 20. Does that sound reasonable? I have a decent amount of prednisone right now so I could do it and see how it goes. ( ask For forgiveness Later haha). And if that does sound reasonable, do I drop to the 25 as soon as I seem like the inflammation has cleared out, or do I stay there for awhile?

I think that your instincts are correct. Don’t attempt a taper until your symptoms have mostly settled. I stayed at my initial dose for 6 weeks - one of the best stable periods of the whole illness that for me lasted 4 years. In spite of a cautious approach with tapering my PMR became GCA. I was mostly left to my own devices by doctors, with the knowledgeable support of this forum. There are good tapering programs pinned to the right of your screen. Tolerating symptoms tends to lead to a full blown flare and back to the beginning again. Symptoms rule, trust your body. Some doctors have an agenda where getting off Pred fast is the top priority. This does not work for the patient and we see the muddled results of it here, all the time.

Thank you so much!

I’ve been having trouble getting a reply to go through but thank you so much! In reading these forums I’ve come to understand that what you are saying is correct. A general google search leads one to believe that you’ll taper straight down and go on your merry way. I’ve learned that’s not the case. I ordered the Kate Gilbert book you recommended. Thank you for that. Regarding my work it’s pretty low key and everyone is very flexible. I’m very fortunate in that. I will however be filing some paperwork with HR that will allow me to take leave on a moments notice if necessary. My doctor so far has been very good about treating my symptoms, I hope he will be on board with my self increased dosing. I’m very glad to have found this place to come ask questions as well as seeing what others have and are going through. Hopefully eventually I will be able to help others as well. Thank you!

yorkieme
yorkieme in reply to Richnroo

Reading your posts reminds me of my own when I first discovered this forum.Like you I started on 60mg,( seven months ago for me,) and simply wanted a cure to kick in so that I could get on with life.

Since then quite a few fellow travellers on here have provided guidance,a couple have told it the way it is and being a Yorkshire type I get the best of both worlds,tough and gentle when needed.

My journey has had a few wobbles but the first issue was finding those knew what the acronym stood for,never mind those who could advise.

So the first job is to find those who can support you,needn't be doctors etc but it does need to be people who understand the pain and complexities,right across the board.

Second job ? accepting that your case is unique and doesn't always meet the requirements of mine,or anyone else.

Third job,I have been a massively active sports person,pretty fit and always active doing something.Stick it on the back burner,you haven't lost it you're just keeping it warm.

Fourth job,you sound pretty well organised,methodical etc, this illness will change that plus other things and if you want a fight it will give you that too.( PMR/GCA is very clever in that I was always taught to pick a fight that you know you can win,PMR wins everytime if you aren't crafty,) Save your energy because believe me it isn't going to be straight forward or with a natural upward progression.

There are lots of other jobs you will find,my present struggle is letting the housework go,a sort of religious taboo for me but here I am looking for a cleaner ..... my wife is shell shocked.lol.

Some,quite a few of my battles have related to my personality/characteristics and that is where I am now,adapting.

I am posting this from the Alaw ward in Bangor hospital surrounded by quite a few people who sadly have lost other battles but my point is that however special these cancer nurses and doctors are most turn glassy eyed when you mention PMR.

First job; Find those who can provide your support network. Take care and good luck.

scats
scats in reply to yorkieme

What wonderful, considered advice to anyone starting on their journey.

yorkieme
yorkieme in reply to scats

It is isn't it ? I received it from people like you and just passed it on.

Richnroo
Richnroo in reply to yorkieme

Thank you for your response! Yes I’m learning that I have to let stuff go and the housekeeping was the worst! I do have my adult daughter doing that for me now. Like you I was also very active and all this goes against my very nature! May I ask what dose prednisone are you now on? Also if you are in the hospital, I wish a speedy recovery for you and hope you don’t also have cancer? ( due to the mention of cancer doctors and nurses)

yorkieme
yorkieme in reply to Richnroo

I am on 15mg/day just dropped from 20mg. I do have Non Hodgkins follicular lymphoma but not being treated for it at the moment.In fact the answer to your question demonstrates the difference between those who can help and those who lack the experience.For two years I have had some lovely knowledgeable people looking after the cancer side. My G.P. has done really well,he hasn't hidden from the possibility that he made mistakes at the start but worked really hard to bring the strands together. A&E Best I keep quiet. Rheumatologist ? the jury is still out but she does have a five star reputation.

Where I have received exceptional service is with regard to how I have been steered through the availability of such as C.T. P.E.T. M.R.I. scans and every other test.

Last Friday I was brought in to A&E,high temperature but with serious pain.(no surprises there,) tested for the virus and cleared.

Last night I had an M.R.I.(someone cancelled,lucky me.)and the results declared this morning,broken T4.

So,back to stage one,finding those who can help and dumping those who cannot.Yes,I've been lucky but I have also had some very very strong support from people on here.

Don't know about you and your daughter but my wife is a Leo,I am a Ram,with the best intentions in the world and much as I love her she has refused to let go,I have tried to explain that it is my illness and she cannot live it for me or make decisions about it.I think she feels a bit put out because I bang on about Health Unlocked and those who help me but it is yet one more little issue for me to resolve.

I kid you not,I have been laying on the bed in one of our spare bedrooms crying like I have never known,almost ready for a breakdown with the sheer load of the physical and emotional torture.

It's a lot better now,I am going to be here another week and she is unable to visit but I have a strong feeling this was needed,it doesn't have to get to this stage but PMR will take you there,no problem.Be interesting to follow your journey.

PMRpro
PMRproAmbassador in reply to yorkieme

OUCH! OH fractured T5 or T6 (can't remember which now) back in January. He'd fallen on his back - is yours just a compression fracture?

yorkieme
yorkieme in reply to PMRpro

Further news to follow on this one so unable to answer but the word broken was used, the Haematologist has done me a big favour really as it doesn't come under him but he is happy to produce the pain relief programme.

I'm a patient of his but taking up a cancer ward bed so fair enough he could be looking to move me on.I would prefer go home though.

I believe your husband has had a pretty tough time of it with his injury ? He must have been through hell of course but then how can you/we create a comparison table of suffering,in December last year I thought the PMR pain was without doubt the worst ever. Then I had four weeks of Tramadol/15mg steroid thrashing around on the floor agony,pneumonia to boot and now I wonder how the hell we cope..

Richnroo
Richnroo in reply to yorkieme

Wow! You have a lot going on!!!! I sure hope you get answers and improvement soon! I’m a Virgo and my husband is a Sagittarius :)

My taper plan (DSNS plan over 4 weeks) worked well for me which was no more than 10% each time and then stay on the new dose for a week after you have reached it before starting to taper again. So each taper took a minimum of 5 weeks and I only started the next taper when I was certain that the symptoms were not building up again.

If you've come down from 60mg to 20mg in 1 month that could have been too fast and your body hasn't had time to adjust.

Richnroo
Richnroo in reply to alangg

I agree with your assessment! I am learning so much from this forum. Question: when you say you started next taper only when you were certain symptoms were not building up again, do you mean you were symptom free at that dose, or were you at a level you deemed acceptable? That’s one of the things I cannot figure out. What to look for as I go down. I do have to say, the way I’ve been feeling at 20 mg and especially today, I’ve decided NOT acceptable. But I do want to be realistic. At 30 mg I had some twinges here and there, but overall felt pretty darned good. I’m assuming (Hoping) that’s what I should aim for?

alangg
alangg in reply to Richnroo

Yes - twinges here and there but the general feeling that I had full mobility, negligible stiffness and no muscle soreness. I could get out of bed easily, put my socks on without having to sit down, tie my shoelaces and walk failrly speedily without a limp. Those are some of the things that I couldn't do if the PMR was active.

I presume that you have looked at the DSNS taper plan? If not, find it on this forum or I can let you have my Excel spreadsheet that I used!

Richnroo
Richnroo in reply to alangg

Thank you! Yes!!!!! What you describe is exactly where I was on the 30mg. So now I know what to look for. Yes I have looked at the DSNS taper plan. Everything is still so new and overwhelming that I haven’t done any more than look. Also for some reason, since my dose is still so high, I was somehow thinking it would apply more as I got lower. I’m starting to rethink that assessment! Are you able to link an excel spreadsheet? That would be most helpful. Side note: fingers crossed my doctor will be on board with higher and slower taper. He’s been great so far, but as we all know, the medical community ( of which I am part of ha!) is not always accepting of patient control.....

PMRpro
PMRproAmbassador

I would suspect your trouble is getting used to such a large reduction in such a relatively short time. There really is no justification in using such a high dose for "just" PMR - I was also barely able to walk but got an amazing effect in under 6 hours with just 15mg. The high dose of pred may have given you an unreasonable expectation of what is possible to achieve with PMR - that high dose will have given the Duracell Energiser Bunny wings!! All the pred does is relieve the inflammation and the symptoms - the actual autoimmune disorder that causes what we call PMR is still there and active, attacking the body tissues and leaving you feeling as if you have flu. The pred doesn't help that bit unless you go to doses that really are not a good idea long term.

If it were me I wouldn't go back to 30mg, 25mg perhaps but even 1mg can make a big difference. And I think you may have to take the pacing side into consideration;

healthunlocked.com/pmrgcauk......

The 10% rule on tapering becomes more important as the dose reduces - and it isn't often needed to get down from such a high dose as 60mg even in GCA and, as I say, 60mg even for a brief time in PMR is probably very OTT and most rheumatologists would have a fit! 30mg is the top of the recommended starting dose range in PMR and even that is for exceptional use. It isn't a good idea to use a much higher dose of pred just because you feel better with the energiser effect - long term it will increase the cumulative dose considerably and that could lead to trouble in the future.

Richnroo
Richnroo in reply to PMRpro

Thank you for your response! What you say is why I was hesitant to entertain the idea of going up. I too wondered if the higher dose had given me a false sense of how I should feel. However, it’s not lack of energy that I’m feeling on the 20 mg. It’s the thigh pain that’s keeping me from standing more than a few minutes. It’s the stiffness in my neck and everywhere else that’s making me feel 90 years old again. It’s the heavy leaden feeling in my legs. This has all been creeping up over the last weeks on 20 mg, each day getting worse rather than improving or even leveling off. I understand what you say about long term increasing the cumulative dose. Again, one of the many reasons I was concerned with dosage increase. But due to the fact I’m definitely going backwards rather than even sideways, I’m thinking a dosage increase is in order regardless. I’m concerned about the level of inflammation that appears to be accumulating. Perhaps you are correct in that 25 would be better than 30. To be honest, I had wanted to stay at 20 because i felt I “ should”. And yes I’m guessing it’s likely that my problem is that my body was unable to adjust to such a large reduction in such a short time. In your opinion is it likely that a person would adjust over time or is it necessary to go up in dose then come down slower? I realize I’m basically asking the same question as the original question, but everyone has valuable input and each answer has me looking at different angles. Thank you so much!

PMRpro
PMRproAmbassador in reply to Richnroo

That's different - and it is the extra information that changes my opinion.

Steroid withdrawal rheumatism (as it is called) appears as soon as you reduce if that reduction was too much and then improves over time. It can feel like the PMR. However, if you reduce below the dose you need then you will gradually build up to a return of symptoms as the excess inflammation each day builds up, just as it did at the start. It sounds as if you are in that situation.

But this is a problem that emerges when a doctor decides it is better to go in with the heavy artillery right at the start. One of the diagnostic criteria for PMR has been a good and speedy response to a MODERATE dose of pred, up to 20mg. More recently that upper level has been raised to 25mg/day. Exceptionally they say 30mg - probably for a very large or muscular patient. Severity of the symptoms isn't really looked at initially, PMR really can respond dramatically in hours to even 15mg. Uncomplicated PMR should show a 70% improvement to this sort of dose and within a couple of weeks - if that doesn't happen then it is classed as atypical for PMR and then it should be referred to a specialist for assessment. PMR isn't the real disorder, it is a set of symptoms and they can be caused by a range of underlying conditions. GPs tend not to think like that and the using of such high doses of steroid masks this potential screening use of pred. It is felt that only PMR responds so positively to a moderate dose - many of the other potential causes would also respond to a high dose like 60mg. PMR is a diagnosis of exclusion - exclude the other possibilities and PMR is left.

Some forms of inflammatory arthritis may present like PMR, they will respond to high doses of pred and pred can be used to manage them but they will respond better and be managed better with the correct drugs and with fewer adverse effects for the patient. RA, for example, will respond to pred in terms of pain and disability in the short term - but it won't slow the damage done to the joints over time which is what causes the deformation of the joints and disability so familiar in the past for RA. Often 15-20mg won't achieve the speedy relief to the same degree - and then alarm bells should ring. By using 60mg straight off instead of trying the lower dose first you lose that signal.

There is a set of graphs looking at response to pred in Sara Muller's webinair from a few weeks ago - one is of a small improvement that then returns to base over time - probably NOT PMR. (At least, I think it was in that webinar, seen a few recently!)

healthunlocked.com/pmrgcauk...

And very relevantly - PMR symptoms that need more pred to stop them worsening suggests to me it could be GCA or LVV (large vessel vasculitis, affecting the trunk arteries) underlying the problem. But the use of such high doses has reduced the specialist's options for looking for that using imaging. You should be pushing for referral to a specialist as an atypical PMR presentation in terms of response to steroids.

Richnroo
Richnroo in reply to PMRpro

Absolutely I have considered everything you just suggested. I’m sure this is atypical and I do have a rheumatologist referral (my doctor referred me right away). But that appointment isn’t until the end of August. I’m just trying to figure out how to manage the symptoms. After all the research I have done I concluded that it would have been better to have started at the moderate dose and have gone from there. But I didn’t know that at the time and now what’s done is done. I was tested for RA and it was negative. It could still be seronegative RA but I really I don’t have any joint involvement and I don’t think it’s that. I really have thought it might be LVV and still think that, But I also am sure PMR is there, unless it’s totally something else, which I really cannot find anything else that matches everything I’m going through so well. So again I’m back to the fact that most likely I started out on too high of a dose and the waters are muddied. I just want to figure out the best course of action going forward. So if what I’m having is steroid withdrawal rheumatism( which it sounds like), is the answer to go up in dose and then come down slower? It sounds like staying at the same dose is probably not likely to lead to improvement.

PMRpro
PMRproAmbassador in reply to Richnroo

Well yes - PMR is on the symptom list for both LVV and GCA.

No - the fact it is getting worse suggests it ISN'T steroid withdrawal rheumatism. It is increasing inflammation - that could also suggest that it is LVV or GCA.

I assume your referral was as urgent? Do you have ANY more usual symptoms of GCA? Because if you do and 20mg isn't holding it, I think an emergency referral might be more appropriate.

I wouldn't go straight to 30mg - you'd be surprised how much difference even 1mg can make sometimes. Try 25mg first.

And whatever you do - if you get any symptoms that are more GCA-ish, you need to get medical advice quickly. A&E/ED if necessary if there are visual signs.

Richnroo
Richnroo in reply to PMRpro

Oh thank you I misunderstood. I thought Getting worse meant it WAS steroid withdrawal rheumatism. No symptoms of GCA . No I have been watching for that and nothing. Regarding emergency referral to rheumatologist, we have one practice in town and they are booked out many months. Covid made things worse. My doctor personally called the doctor and getting in at the end of August is remarkable compared to how long others wait. Sigh. Ok I like your advice about 25 mg. I was gung ho for the 30 but do understand Why it may not be optimal. I do appreciate this forum and the help you all are providing!

PMRpro
PMRproAmbassador in reply to Richnroo

It comes down to you need what you need - it might be 21, it might be 26 - only you can identify which.

Richnroo
Richnroo in reply to PMRpro

Thank you!!!!

Richnroo
Richnroo in reply to PMRpro

Oh I just want to add that I didn’t know the part that you said about not looking at the severity of the symptoms. During my initial presentation it had gotten so bad so quickly that the severity truly was what I was concerned with and I think my doctor was too. He’s been my doctor for over 30 years and I know he just wanted me out of misery. Lesson learned I think. I had been thinking if a little prednisone is good, a lot should be better, right? Wrong!!! Shows how little knowledge there truly is about this disease and that makes me sad 😞

PMRpro
PMRproAmbassador in reply to Richnroo

It is in some ways - but what starts out high must come down!!! It's just a shame he didn't give you 25mg first - reserving the right to go up if that didn't work enough.

Richnroo
Richnroo in reply to PMRpro

I agree. Hindsight is 20/20 of course. I’m sure hoping 25 does the trick. Not to be annoying (I’m sure I am) but how long would you suggest I give it at 25 to know if that’s going to do the trick?

PMRpro
PMRproAmbassador in reply to Richnroo

A week? Though if the symptoms continue to increase even on 25 that will tell you quicker that it isn't enough.

Richnroo
Richnroo in reply to PMRpro

Thank you! That sounds reasonable.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Have a look at this as well - bit more info. healthunlocked.com/pmrgcauk...

Richnroo
Richnroo in reply to DorsetLady

Thank you. Yes that is very helpful. Now I’m just crossing my fingers that going up to 25 is enough to knock down this inflammation that has accumulated so I can start tapering more slowly.

PMRpro
PMRproAmbassador in reply to Richnroo

Take a few days off and rest - that will give the dose the best chance.

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