New to PMR for husband. Need info

My husband was diagnosed with PMR about 2 weeks ago, thought it was gout initially. Did the gout meds with no help. Then 50mg prednisone for a week. symptoms miraculously disappeared in about 8 hours. After five days, dr. stopped the prednisone to get an ESR crp, pain came back full force in a day and a half off the prednisone. ESR and CRP came back elevated so Dr started him on 15mg daily. Pain disappeared but after five days achiness started coming back so dr increased to 20mg. This morning he had a flare so we gave him and extra 5 mg and pain disappeared. He is six feet tall and weighs approx 225 pounds. Is a starting dose of 25 mg for a man his size too high?

Eileen who knows a great deal more about drugs and physiology than I do will surely be along to answer you.

Your husband’s experience mirrors that of many of us with regard to diagnosis and initial response to prednisolone but there are many individual variations as to what regime will a) keep us comfortable and b) at what rate we can taper our doses.

I believe one of the problems is that different people absorb different percentages of the pred. and this will, obviously, be reflected in our response. I don’t think that this is related to body mass but Eileen will know.

I weigh less than 120lbs. and when I was first diagnosed my GP prescribed 30 mgs. This worked within four hours and three years later I was down to zero. When PMR returned for a second round after three years remission the same GP said that he would treat it less aggressively this time ( didn’t explain why.) My reductions were not as straightforward the second time but I did get there eventually and have now been in remission for more than five years.

Do hope things soon get sorted for your husband and do keep in touch with this forum; it’s invaluable.

The suggested starting dose of pred is between 12.5mg and 25mg so 25mg seems fine for a largish guy. The trouble with giving more than that is that other things also work for higher doses of pred so it is not always PMR that is the problem. From what you say it does sound like it is probably PMR though.

No - for a large man it is perfectly reasonable and might even be used for someone smaller - a study some years ago in Italy found that 75% of patients achieved an acceptable result in a month with as little as 12,5mg. Small women did better on that dose than large men - go figure! And most people want a result quicker than a few weeks. The 50mg was too high though. The usual “is this PMR?” dose should be 15-20mg as PMR responds to that sort of dose where other options wouldn’t. Then you find the lowest dose that is effective in the range 12,- to 25mg/day - because everyone absorbs different amounts of the oral dose and responds differently.

However - at a guess he thinks he can go back to normal activity now he’s on pred? I’m afraid not - the pred only manages the inflammation that causes the symptoms, the actual underlying disorder continues in the background, making your muscles intolerant of acute exercise and causing fatigue, a bit like flu. That must be managed by pacing, resting appropriately and lifestyle changes.

This is our resources post with a load of useful and reliable links:

and if you ask particular questions someone will help out - someone will have been there!

thanks so much!!

I’m glad you got the diagnosis after one werk only. Many of us stayed in pain for quite a while. my journey started six months ago and was finally diagnosed correctly after six weeks of pain. i started at 15 mg of pred and was pain free. I’ve tapered down to 12 using the DSNS method. I’m a man, 6 feet, 175 pounds. you’ve heard from our expert, Eileen.
Best wishes

As above 25mg is not unreasonable in a large man. The other thing to consider which worked for me is splitting the dose to take a small proportion last thing at night to help stop the early morning symptoms on waking. I started on 15mg once in the morning and pushed up to 20mg due to residual morning stiffness and aching but became virtually symptom free once I split to 15mg morning and 5mg last thing at night. I wonder whether I might have managed to stay on 15mg if I had tried splitting it first. I have now cautiously started tapering by dropping the morning dose to 14mg.
The other thing to be aware of is the possibility of suffering muscle cramps due to the steroids which apparently respond to magnesium supplements which I am just going to try out myself.

hi radman…I’ve been getting almost unbearable muscle cramps and “charlie horses” in my calves and feet lately! am I understanding you correctly? this might be prednisone induced? is magnesium helpful? I’m desperate to get some relief!

I get cramp off and on. I actually use quinine sulfate which works brilliantly, but it seems it is becoming frowned on nowadays.

I found out about the magnesium issue from this forum, it wasn’t mentioned as an issue by my rheumatologist but when my wife picked some up for me in town today the shop said they sell loads to people on steroids. I woke up last night with bilateral calf cramp which I never had a problem with before I started the pred. Taken the magnesium so hoping for a better night tonight.

Good luck to you! I’m going to pick some up at the store later on…keep me posted on how it’s working for you!

Pretty sure Eileen should be credited with the magnesium suggestion. Not something I came across when I did gen med before entering radiology. Hope it works for both of us!

Thanks for the credit!!! I somehow think that I (or one other others who have been here a long time and heard my recommendations) will have mentioned it to anyone who complains of cramps! Mostly me as I live in mainland Europe and the first thing recommended here for cramps is magnesium: “Have you tried…” is an early question from any GP. It is available in every supermarket and that’s where you are sent first. In the event it doesn’t help fairly quickly - they then look further.

Eileen, thank you for telling me about your PMR friend in France. I’ve made contact with her now. It’s been very helpful hearing from someone living in the same area as us, and who has had similar experiences with GPs and so on..

Thank you so much for your advice on the split dose!! 15 mg in the morning and 5 mg at night and he is like a new man. No pain at all for two days now. Our children could never do 24 hour allergy pills, they always had to split the dose because they could never make the 24 hours.
I’m glad that I found this site!!
Utaker

Maybe there are other migrants - you can found a Haut Vienne PMR support group! :wink:

That’s good to hear. The next issue will be how to reduce steroids on a split dose regime. I still haven’t completely figured out this part yet. I tried reducing the morning dose to 14mg 3 days ago thinking that 1mg wouldn’t really make a difference although I had only been on 20mg for around 3 weeks. I admit I was surprised to find a little aching reappearing in the hamstrings and the left wrist symptoms which have been part of my illness just starting to come back slightly so I have gone back to 20 mg for the time being. It seems that PMR can be quite dose critical in terms of response to treatment which has been interesting when as a doctor you tend to think of steroids as a fairly blunt instrument.

“It seems that PMR can be quite dose critical in terms of response to treatment which has been interesting when as a doctor you tend to think of steroids as a fairly blunt instrument.”

I wrote a post some years ago called “What a difference 1/2mg makes” - in the context of reducing at slightly below 10mg. I was using alternate day dosing (it worked well for me) so that was 1/2mg over 2 days!

Normally steroids ARE a blunt instrument - and in PMR so is the starting dose, it is one that should be high enough for everyone. But once you start tapering it is a different matter. There is no way available of assessing the underlying disease activty and it is different for everyone. I believe that in the first 6-12 months it is at its highest for the majority of patients and that it possibly cycles in something like a sine wave format. If you happen to be reducing on a falling phase you will reduce reasonably easily but may experience a flare as it increases again - although mostly the new peak activity is lower than the last one and it depends on how fast you are trying to reduce. And eventually as you reach your “lowest dose” for the moment it is pretty critical, not perhaps in a day or two, but like the single biscuit that over the year leads to a couple of pounds weight gain, over time the left-over inflammation because of not quite enough pred fills up the PMR bucket and it overflows to cause symptoms. There are probably no significant symptoms until there is a given level of inflammation - so how well it was cleared out in the first place is important.

As for which to reduce when you use a split dose - again we all differ, Experimentation again! And by the way, did your symptoms arrive on day 1 or day 3? And had you been doing much the day before?

Good morning Eileen!,
I think I gradually noticed the symptoms over the course of the first two days, wasn’t sure but by day three it was pretty clear particularly when the wrist tenosynovitis started to flicker. I also get a stiffness in my left shoulder which was the most recent subject of surgery around 2 years ago.
Although I am still learning about PMR my impression already is that it is a function of the level and duration of an antibody producing B- cell population responding to an as yet unknown initiator driving the disease that determines its severity and duration which would explain the typical disease course of around 18 months prior to some form of remission as that population of immune cells naturally falls away like in other immune reponses to an acute insult. I’m also wondering if a history of previous joint surgery might be relevant. It would be an interesting research topic to do a detailed serum immunoglobulin electrophoresis screening in newly presenting cases or maybe someone has already looked at this?

For the first time in my life that I can remember I had calf muscles cramps in both legs on waking yesterday morning . Really severe and had to take time before I dared put feet to ground. Today the muscles feel very sore presumably as a result of the cramps.

I cannot blame Pred. though as I’ve not taken any for more than five years. Should I try magnesium? Routine U+E’s ( kidney cyst of long standing ) a month ago were normal.