Recently Diagnosed with PMR: So happy to find... - PMRGCAuk

PMRGCAuk

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Recently Diagnosed with PMR

Draperies
Draperies

So happy to find information on your site! I woke up with a terrible neck ache. (7 days prior, I was moving a heavy drop leaffed table and I dropped it when I experienced a terrible pain in my neck) I had to use my hands to lift my head off the pillow. I am a tough girl and I thought - this will go away. Well it did but the pain moved to my shoulders. It was constant but I thought it would go away. One night, I went to bed and I woke in severe pain barely able to get out of the bed. I could not raise my arms or use my upper body. My hips were sore and I had difficulty walking. I am 60 years old and I felt like I was 100! I went to the Emergency Room and after a few weeks, it was determined that I had PMR. I went to a rheumatologist who started me on a very low dose of prednisone (4mgs). It has helped and my symptoms are much better. Because of the side effects, I initially asked for a low dose. I go again tomorrow and I am not sure if I want more. Every week, I feel a bit better but then... there can be a worse day!

I just finished 5 days of a true R&R vacation with Carribean ocean swims. They really helped my aching arms and stuck shoulders!

I am going to try to take a long lunch break to quit looking at my computer. I am hoping this PMR will leave me as quickly as it came!

Thank you so much for your posts.

19 Replies
oldestnewest

Hello Draperies,

Your story is so typical of many of us in the type and level of pain suffered before diagnosis. And the ‘60, feeling like 100’ feeling.

Less typical is the fact that 4mg helped at all! Very very surprising....

Initially all of us feel we don’t want to be on prednisolone at all, and would wish to be on lower doses.

People will be along later when UK wakes up, with some detail for you, but put very simply it is not enough to feel ‘every week is a bit better but then....there can be a worse day.’

A lot of us, admittedly not all, can be pain free when on the best starting dose for them...and that can be anything between 15mg and 25mg depending. What happens if you are on too low a dose is the inflammation in the arteries, which is what PMR is, builds up and up until you need a higher dose to whack it into submission. When you are pain free or nearly, you stay on that dose and slowly in little steps reduce so that the inflammation does not build up again.

Dorset Lady will send you some really helpful info about this.

I wish you the very best of luck.

Where are you based?

I am normally in the UK, but currently thoroughly enjoying time in New Zealand

Mary

PMR diagnosed Jan 2016. Currently resting (again) at 7mg until I return to UK, and then till after I have a total knee replacement in early March.

Draperies
Draperies in reply to Mary63

I am in Ashland, VA- USA! Thanks for your quick reply -I must admit, normal seems so long ago- (October 2018- I went to the gym every week day and took the tough 5:45AM classes.) This will not be in my picture for a while!

As I said, I am going to my Rheumotologist tomorrow and your reply will be a part of my conversation!

Have a great time in Wales! I hope to go some day! Grace

Mary63
Mary63 in reply to Draperies

I was on a tennis holiday 1 month before my diagnosis...playing twice a day, though I had been getting intermittent shoulder and back pain for a couple of months. The tennis holiday was in warm temperature and seemed to help. But a while later NOTHING helped...apart from steroids! Hey ho...

Draperies
Draperies in reply to Mary63

Now that stinks! Have you been able to return to tennis?

Mary63
Mary63 in reply to Draperies

Initially yes I played but not able to play matches as too tired and a lower standard. Had to semi retire from work cos of PMR and thought now’s my chance, but unfortunately within weeks one torn knee cartilage. Op to repair. Then 3 months later another torn cartilage...same knee. Repaired in July. Now that knee totally b***ered, so no tennis for me. Total knee replacement in March, but I have doubts now about the other one. I am however doing some gym work...not my favourite pastime...but as a means to an end to keep stuff strong. Not all people with PMR can do much gym work as muscles rebel. But I started slowly and am ok. Cos I don’t really enjoy it I am doing about 30 minutes 3 x a week

Draperies
Draperies in reply to Mary63

Wow! That’s a hard pill to swallow! Thanks so much- so much to think about!

I resisted taking enough prednisone for 6 months ( which were hell)! Eventually I agreed to take a higher dose, but found that 6.5mg, took all my pain away, so I stuck with that. My experience is not the norm, but some people can manage control with less medication. Currently on 1.5 mgs after 4 years and one period of remission ( just a few months). I don’t feel sick, but know that for now I need this maintenance dose.

There has been talk of a higher starting dose of pred enabling people to achieve remission sooner. Maybe PMRPro will address this?

Anyway from my experience, messing around with doses that are too low to completely control your symptoms is a bit futile. There do seem to be various forms of progression for this illness. Hopefully yours will be a short one 😊.

Draperies
Draperies in reply to Bronni

Thank you so much Bronni! I appreciate your thoughts on dosage. I am 5’4” and 115 lbs. (Does size matter?)

I traditionally have never had to take much medication so it is hard to begin a regimen of a medicine with so many side effects. But... I would love normal again!

Mary63
Mary63 in reply to Draperies

When she wakes PMRpro will come in all guns blazing about side effects, as there have been studies which negate a lot of reported side effects. Also there are things you can do re diet to avoid the risk of weight gain and Type 2 diabetes, eg very low carb. And to avoid osteoporosis to take calcium, Vit D and Vit K2. People who are more knowledgable will be along later I promise!

Bronni
Bronni in reply to Draperies

Hi, draperies. I am a little taller, little heavier, so size might be significant, but somehow I doubt it. I also have never been on any meds and even now, the pred is the only medication I take. So I know how worrying it is to start down this road. I upped my pred from 3mg every week until I reached a point where I felt normal (6.5). My only symptom now seems to be tiredness, but that could be my age and I’m fortunate to be retired, so it’s not a big deal. I have had no side effects in 4 years either. And the opinion from this forum seems to be that side effects are minimal to none at this low dose. Good luck!

PMRpro
PMRproAmbassador in reply to Bronni

Size isn't as significant as you might think as there are several factors that are important. Bioavailability is a start - people absorb between 50% and 90% of the oral dose and that isn't related to size. The activity of the underlying disease and so the amount of inflammation produced is also a factor. Some people simply don't respond as well to one brand of a given steroid as to another or to one corticosteroid compared to another (Medrol doesn't work for me, prednisolone and prednisone do).

So they titrate the dose - and to get a speedier result they start higher and taper down. That's important in GCA in particular and in PMR it answers a basic question quickly: Is it PMR at all? If it doesn't respond to a moderate dose the chances are reduced that it is PMR and so you can stop the pred altogether quickly. If you start low and work up the chances are the starting dose is too low anyway and you mess about adding pred when it wasn't PMR anyway.

PMRpro
PMRproAmbassador in reply to Draperies

I wrote this to Bronni, she thinks I meant it for you (I can't remember but probably...)

A higher starting dose will achieve drug-induced control of symptoms faster and you will find doctors who call that remission but it has no effect on the underlying autoimmune disorder which causes the symptoms, that continues to chug along in the background whatever dose you take until it burns out and goes into proper remission. Then you will manage to reduce the dose to zero and have no symptoms. Smaller people probably will manage with a lower dose - BUT there are no hard and fast rules.

The side effects really do tend to be over-egged and most can be managed fairly well when you know how. The risk of both weight gain and steroid-induced diabetes can be reduced by cutting processed and simple carbs drastically. I gained weight before I knew that - I lost all I gained and have never had signs of diabetes or osteoporosis despite being on pred for over 9 years now.

Like DL I'm concerned you haven't cleared out the inflammation - and unmanaged inflammation is just as damaging as pred in the long run.

Mary63
Mary63 in reply to Bronni

So interesting. Norms are only averages. And averages cover such a wide variation. Everyone’s different for sure.

PMRpro
PMRproAmbassador in reply to Bronni

A higher starting dose will achieve drug-induced control of symptoms faster and you will find doctors who call that remission but it has no effect on the underlying autoimmune disorder which causes the symptoms, that continues to chug along in the background whatever dose you take until it burns out and goes into proper remission. Then you will manage to reduce the dose to zero and have no symptoms. Smaller people probably will manage with a lower dose - BUT there are no hard and fast rules.

The side effects really do tend to be over-egged and most can be managed fairly well when you know how. The risk of both weight gain and steroid-induced diabetes can be reduced by cutting processed and simple carbs drastically. I gained weight before I knew that - I lost all I gained and have never had signs of diabetes or osteoporosis despite being on pred for over 9 years now.

Like DL I'm concerned you haven't cleared out the inflammation - and unmanaged inflammation is just as damaging as pred in the long run.

Bronni
Bronni in reply to PMRpro

Thx, pmrpro, I’m sure you meant this reply for ’draperies’, but it came to me. I was trying to remember something you posted about findings of starting patients out on a much higher than normal dose, leading to a shortened length of illness. But this could not be replicated after treatment had started at the lower normal dose? I remember thinking, I’d missed the boat by keeping my pred dose low - even though it works for me. Do you have that link?

PMRpro
PMRproAmbassador in reply to Bronni

Don't remember that at all - a higher starting dose can't influence the later course of the illness, however much we would like it to do so. All the higher early dose can do is clear out the inflammation better or faster. That does of course probably influence the early tapering - the baseline for topping up with the daily dollop of new inflammation will be that much lower.

Bronni
Bronni in reply to PMRpro

Gotcha, thx

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

4mg is a very low dose for PMR.

When you say symptoms are better, that indicates that they are still there - which is not the aim really. The initial dose, usually 15mg, should get rid of all pain - but it can vary from person to person. My concern is that you are not taking enough to control all the inflammation, and although you are concerned about side effects of steroids, the inflammation can cause problems as well.

Your PMR may not be typical, but this may give you some idea of what you can expect-

healthunlocked.com/pmrgcauk...

As for side effects, have a look at this - practicalpainmanagement.com...

Welcome Draperies, In Jan 2018, I, too, thought more exercise would help, and luckily, got diagnosed pretty quickly & started on 15 mgs. Using DorsetLady's tapering plan, 12 months later I am toggling 5/4.5 mgs.

Drill and mine lots of data here to help you plan a course to deal with PMR.

You are in the right place!!

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