New to PMR for husband. Need info

thanks so much!!

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!

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

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.

"the typical disease course of around 18 months prior to some form of remission"

Depends what you call remission I suppose, drug-induced remission of symptoms can be achieved far sooner than that, median time to achieve 5mg/the lowest dose is possibly 18 months, but I can promise you that a duration of under 2 years is the exception rather than typical! Eric Matteson and co found 30-odd% are off pred in under 2 years - and I'd say that was about right given the forums are likely to be skewed populations and perhaps have more longer term patients than generally found. In over 10 years on 3 different forums I have come across only a few who were off pred in 2 years and remained off for a significant time. One of them developed PMR about 4 years after getting off pred for GCA. Even GCA tends to be nearer 4-5 years.

It isn't just B-cells is it? I thought there were a few different mechanisms that had been proposed. I've never looked to see if there has been an electrophoresis study - I doubt it somehow and I don't think that Sarah Mackie included it in her ongoing study though I might be wrong. She was hoping to get some mitochondrial work done - depending on patients being willing to have muscle biopsies and I do know a few who happily agreed.

Joint surgery is one of the things that some people mention as having been in the run-up to PMR appearing - but the flu shot also gets a lot of mention. Severe stress is also a major feature - though not entirely in the immediate past but it also has a big effect in flares. OTOH, although I have had metalwork, that was 26 years ago (so 14 years pre-PMR) and I had never had a flu jab. And I know a few who had struggled to get their pred dose down until after hip replacement - it was as if the PMR had fed on the OA pain. The only real theme we see is that slow reduction in the first year or so (as supported by Quick and Kirwan and their keeping patients at 10mg for a year, so above 10mg for 15months at least) seems to assure a simpler journey with next to no flares and happier patients - irrespective of presentation and history.

3 days to noticeable pain sounds very flare-ish - and that your current dose is barely holding it. Have you ever had your IL-6 level checked? I did once but nothing was said about it and it was in the UK so I had no automatic access to my results - the only thing ever said was that he didn't think it was PMR. A trait we have noticed is that there is a desire to make a fairly typical presentation of PMR into psoriatic arthritis, even with no history of psoriasis, or anklylosing spondylitis. Anything to avoid pred...

By the way - this

https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica

suggests electrophoresis as one of the labs to be done in the differential diagnosis. So would that be for one of the differential diagnoses? I'm sure I knew once upon a time! Well - myeloma I suppose but it seems that doesn't seem to get done in every patients as I know someone who has now been dx'd with myeloma after her original medical team having messed about for nearly a year unable to understand why she couldn't reduce.

Its a fascinating subject which is stretching and updating my atrophied knowledge on immunology however although the effects of prednisolone are complex and far reaching if you believe wikipaedia (don't laugh) the major mechanism for therapeutic immunosuppression is via inhibition of nuclear factor light chain enhancer of activated B cells. There are some more complex T cell effects but another possible key action for me is suppression of humoral immunity which results in diminished B cell clone expansion and antibody synthesis. It just seems most plausible to me that the explanation for the very close relationship between steroid dose and disease response is on the basis of control and reduction in circulating levels of a causative antibody rather than the far more complex effect on T lymphocytes although this area could have more of a bearing on overall disease duration and likelehood of late flares.

I have had regular flu vaccination for the past few years due to working in hospital where it is pretty obligatory however of interest I actually suffered a fairly severe episode of what was likely to be the aussie variety in february this year due to being given the cheaper trivalent vaccine which had no protection against this variant (that's the NHS for you). I was off work for a fortnight which was very unusual for me.

I am also fascinated by the fact that the symptomatic articular/periarticular symptoms which came with my version of PMR only affect the two joints which have undergone previous surgery.

I was tested for myeloma as well as several different viruses.

It would be simple to measure serum antibody levels in patient suffering acute flares to see if there is a corresponding peak in IgM levels.

No reason why not to try some magnesium supplements seeing as they are more of a dietary supplement available at health food shops in UK rather than being a medicine. I have not had any more cramps since I started taking some.

Many thanks; I'll hope it was a one off but if it happens again will take your advice.

Are they SURE it is PMR? Though there is a theory that the autoimmune part is attracted to existing weak spots - which might fit.

The general assumption is that pred only manages the inflammation but they don't seem to know why. However - have you seen the study Dasgupta did with Imperial?

https://www.ncbi.nlm.nih.gov/pubmed/24158630

I noticed this at the side: https://www.ncbi.nlm.nih.gov/pubmed/22640655

I don't think GCA/PMR are in any way heterogeneous disorders . But I don't know enough to "get" much of the immunological stuff - too old and been out of the field too long!

PS - I don't laugh at Wiki! There is a lot of good scientific stuff in there if you are lucky.

Hi Eileen,

'They' basically means me and my rheumatologist. We are as sure as you can be based on a typical symptomatology with a rapid improvement on steroids having excluded hopefully all the other likely causes with multiple blood tests and viral serologies. Whatever I am currently so much better on the pred and now have to remind myself to take it most mornings as the disease no longer does this for me.

You keep yourself pretty well-informed for some-one claiming to be out of the field if you don't mind my saying!

Jem