It's great to see that this forum exists, have just joined up and sent a message to my local group. I've filled in my profile, I hope there's enough info.
I've read through some of the posts and realise how lucky I am to be as mobile as I am, but I'd like to find out a bit more about PMR.
I don't understand at all about the readings I was given for PMR, I hope someone can explain?
Also I'm concerned about tapering further and thought the dead slow and nearly stop reduction plan looks good.
I've sent off for Kate Gilbert's book, but thought I ask on here.
I also wondered whether I am likely to be hurting myself by continuing running? I would like to go back to playing hockey again in September.
Thank you
Written by
Ackrow
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You’ll get more Hello’s & replies in the morning and some help to you understand your blood results etc.
There’s a lot to learn & it’s important to take it steady especially at first, the Prednisolone can give you a false feeling of being better but it’s such a relief for the pain to ease, isn’t it.
Dorset Lady will send you her ‘Advice Link’ for those newly diagnosed in the morning which will help guide you.
Readings - CRP was high ESR looks ok. Have you had them done since?
Your reduction is very quick, but as you say you may be one of the lucky ones. But if you’re on the correct dose you shouldn’t be having any symptoms - that’s the aim of the game.
You are obviously very healthy, but you need to be aware that working through the pain is not good with PMR - you could be building up more trouble for yourself.
Hello and welcome Ackrow! This forum eases the whole experience of PMR. Make sure to build in good recovery time with your exercise regime. Our muscles need this.
Welcome.I am six months into this forum and very pleased to be so. We are all different beasts capable of many things but if you asked me to supply one word that might help it would be "caution,"
I have spent a fair bit of time setting targets for physical activity and getting it wrong,doesn't mean you will,but it has caused me to be extremely cautious.
What ever your journey I wish you good luck,take advantage of the expertise and experience on here.
Absolutely. I/we live at the edge of Snowdonia and for years would hill/mountain walk for fun, ex rugby player always been pretty fit and active.Built our home in Andalucia at the age of 53 etc,etc, and that was hard work. When this happened six months ago my brain simply assumed that a few weeks tablets and bingo. What a shock.lol.
I continued the lifestyle I had but not for long,even the housework now absolutely destroys me.Energy levels are reasonable one day but like today I have woken up feeling very tired. Big part of my problem is insomnia plus other factors from side effects of Pred'.
My experience will not be yours of course and only you can gauge how everyday life affects you. I am now starting to believe that I can't do everything now but at some point I may well do.
The consequences can be anything from a boring day feeling as though I want to climb Everest but knowing I all the way to a full day or more of pain.
"I don't understand at all about the readings I was given for PMR, "
Which ones? Tell me and I will explain in people-speak. There should be figures in brackets after the result on the list - that is the normal range for that test for that laboratory, they do vary a bit from hospital to hospital depending on the way the test is done there.
Of the ones you mention in the profile:
ESR is erythrocyte sedimentation rate - the distance the red blood cells settle down a vertical tube. It is increased by the presence of proteins on the surface of the cells which makes them clump together and heavier - so they fall faster. 32 is high but not massively so, it can reach triple figures, but the normal range is usually taken as 0-20 (though that is for values found in thousands of people, each person has their own normal)
CRP is one of those proteins and yours is probably very raised (I need to know what your lab says though).
Both the CRP and ESR are called "acute phase responses" - they rise in response to inflammation or infection in the body. They are very general tests - they tell you there is something happening but not exactly what or where. They don't PROVE this is PMR. they are just another piece of evidence in the search for what is wrong.
Hb is haemoglobin, the substance in the blood that gives it its colour and which transports oxygen around the body. Using those units (g/litre) the normal range for women is 115-165 (old speak, 11.5 - 16.5 g/100ml). So you are at the bottom of the range but that is common in autoimmune disorders and nothing to really worry about.
As long as your aren't in extra pain the day after exercising it is probably fine - but rest days are even more important for us than for the average athlete - not necessarily not doing anything but using other muscle groups.
Were you in less pain at the starting dose? If so, at what stage did the hip and stairs pain return/worsen? You have reduced a long way in 9 months - average time to get to 5mg is 18 months, you are way ahead of the curve. But given your comment about Pilates and chiropractic - I supect you have similar problems to me and the last 4 months won't have helped!! However - last week I realised that I was struggling climbing the stairs - and increasing the pred dose a bit has made a massive difference. It was a flare insinuating its way in ...
Unfortunately I haven't been given a lab range by the consultant. These details come from a letter from my consultant to my doctor, only those figures are mentioned.
When I'm running I don't feel any pain in my hips or neck, but despite stretching out after the run, my hips do ache for the rest of the day, but it's then all gone in the morning. I did only run 3 times a week, different types of run (short/long/sprint and mn different surfaces. I then reduced to 2 times a week and am going to have at least a week off running as I have pain in one of my quad muscles.
I'm having about the same amount of pain as when I was on my starting dose of 15mg.
I'm lucky that although I have been seeing a chiropractor for years before PMR I generally wasn't in any pain, I was just making sure I could continue to play sport as long as possible.
Before lockdown I was going out walking or running about 5 days a week and working 2 days a week but only partly desk bound. In comparison, on lockdown I ended up working from home more or less full time for the first 4 weeks and my hip pain increased dramatically as I rarely stood up. Once I realised this and made a point of getting up at least every hour the pain reduced back down again.
Today I've been sat at a computer most of the day, but am not in any pain when climbing stairs so it does vary a bit.
I'm a runner and still run now after 9 months into PMR. I had to stop for around 6 months so I'm very unfit! I'm no where near my usual half marathon distances but stick to anything under 10k at the moment doing walk/run.
What I've learnt is that it's still possible but factor in more recovery time and increase intensity and distance very slowly so you can evaluate the effect over the next few days. I'm a big advocate of keeping moving and it does.help me - Just not overdoing it. My rheumy also said that you wont cause any issues but be guided by your body when I asked the question.
I recognise a lot of me in you; active, robust, full of energy…..until along came PMR.
Let me say, right at the start that the most difficult thing you will have in the early stages is to accept that you have a condition that isn’t going to go away soon; that will frustrate and anger you and probably cause you to take shortcuts in the tapering of medication (prednisolone).
I was much older than you when first diagnosed and prior to the first signs of PMR, played golf 3 times a week, looked after all the gardening of my large garden (including manipulation of a large motor mower in and out of the garden shed) and was generally active, strong and capable of anything that came my way.
What to fully appreciate at this time is to know the your musculature is so much less physiologically robust than it was before, and any attempts to overdo the physical is repaid by pain, discomfort and more frustration.
Others will answer your questions re tapering etc.
Listen to what is said on this forum. Know that the disease is not forever; and that careful management - and that means you listening to your body - will pay dividends.
Take heart. In the forum you have found a fund of advice and understanding. Aren’t we all lucky?
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There should be figures in brackets after the result on the list - that is the normal range for that test for that laboratory, they do vary a bit from hospital to hospital depending on the way the test is done there.
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