I am new here....been very healthy my entire life, exercised every day, yoga most
Days....Sept & October 2017 I sold my old house & bought & moved into a new nearby house....
I packed & unpacked, dragged & pushed much of my furniture myself....my arms started to bother me & I thought I had pulled some muscles....but in November one AM I could not
Push the duvet off my body w/o horrible pain.....went to family doctor & he took a lot of tests with no problems but my SED rate was 60....I took 20mm of predesone & it
Stopped the pain....I was told I had PMR.....& I should take the lowest dosage of pred
Everyday that I could live with.....I was given no other information.....I went on the internet & also found your website that helped a lot....but I have been on 10mm of pred everyday since mid November 2017 & when I tried to reduce 1mm last month, after 3 weeks I had horrible pain & had to go back up to 10mm??? I have reduced my
Exercise to half & my yoga is too much for me....can you please let me know what you think?
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LMAR
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Greetings and Welcome LMAR - as a new member of the Club that none of us wanted to join..!
Assuming that you do indeed have PMR (and preferably confirmed by a Rheumatologist?), I'm certain that you'll soon get lots of replies, advice, support and wisdom from others of Us Lot here who've had a similar experience.
Your GP seems to have the right idea re. (sic) 'the lowest Pred dose that you can live with.. etc'. But, as people often report here, some GP's either don't have the knowledge or the time to give more in-depth help and advice about PMR and / or Pred tapering. Again, this comes with the qualifier that you have a reliable diagnosis of PMR...
Just sit tight and I'm sure you'll get an avalanche of reliable and trusted help, opinions and support very soon.
Best wishes and try to keep smiling in the meantime
Hi I also was very fit always kept myself fit but had to reduce what I did.I now try to have a break in betweendays of walking and playing bowls, see how you feel,don't overdo things. enjoy what you can do,hope this helps you.Ive learned so much from posts from other friends.
If you were started on 20mg in November initially, did you then drop straight down to 10mg? That’s what your post seems to imply. If so, then that’s not the best way to go. Yes you need to get to the lowest dose that controls your inflammation and pain, but not in one fell swoop.
I would suggest you go up to 15mg, with doctors permission, and get yourself stable, and then try reducing 1mg per month providing no return of symptoms.
You say you’ve reduced your exercise by half - but if you are still doing it every day that may be too much; your muscles need more time to recouperate now than pre PMR.
Have a look at attached for info, and maybe a better way to taper in future -
Hello and welcome LMAR, I’m glad you found us, your doctor doesn’t sound much use.
What was your start dose? You said “ lowest possible”. 20 mgs is average for PMR. If you’ve gone from 20 mgs to 10 mgs a few weeks, it’s way too fast. If you feel well on 10 mgs I would stay there for quite a while. I can’t be more specific because we are all different but I’d probably need about 6 months. If you started on 10 mgs after a short while on 20, the same applies really. I am afraid PMR is no respecter of physical fitness. We’ve had real athletes on here and if there is a personality type it is probably quite driven. Busy people who often do a lot for others and put themselves last. The only way to stop you is PMR, just a theory. I’ve just observed this over the couple of years I have been on this site. The trigger could well have been giving up your old home. With the best will in the world that is stressful.
The aim of tapering your Pred dose is to get to the lowest dose that manages the inflammation. You start on a higher dose to get the inflammation down in the first place. The disease can last a few years. It responds well to a slow taper, no more than 10% of your dose at a time. I use a pill cutter and reduce by 0.5 mgs. I am at 7 mgs now and like you on 10 mgs I cannot, for the moment get lower. So I am waiting it out and not really feeling 100%. There are examples of taper programmes on the right of your screen. For now though, I’d sit tight. Feel free to bring your questions, there is always someone to advise or suggest things that help. All the best, hope this is of some use.
Did you stay at 20mg for a time before reducing? If you didn't - maybe the existing inflammation is still hanging around and your baseline is high, even the slightest bit of extra causes symptoms.
The others have said everything else I would say so I won't repeat it. But I will add that the pred only mops up the inflammation caused by the underlying autoimmune disorder - it has no effect on the disease itself and that continues in the background, causing inflammatory processes to attack your body tissues, in PMR that leads to a vasculitis (inflamed blood vessels) that impairs the blood supply to the muscles. They remain intolerant of acute exercise - it doesn't mean you CAN'T exercise but it does mean that you will have to reduce the amount and intensity for some time. Most people who have done a lot of exercise/sport pre-PMR reckon they can do about 50-70% of what they did before, but that is AFTER they have "retrained". The most obvious effect is that you develop delayed onset muscle soreness very easily, with far less activity than you did before. And it takes much longer to resolve. It is advisable to exercise a day and rest a day until you are "back in training" and start with a lot less than you are used to.
It doesn't mean you can't exercise - it means you have to go about it rather differently for a while.
Thank you so much for replying to my email....you have given me a lot of insight regarding exercise.....the initial doctor gave me 3 - 20mm pills to test over 3 days & if the pain went away he felt more comfortable with his PMR diagnosis....then I started taking 10mm per day after that initial 3-day test...
I see two doctors & neither of them know much about this disease....
I suspect as others have said...you didn't stay long enough at 15 to 20mg. Get to a dose that gives you quality of life back.
It's not a condition that you can just push through. It's finding the balance of pred dose and lifestyle that works for you. I found the first 6 to 8 months confusing and hard. I got to 8mg, flared then back up to 15mg in Jan 17 (DX June 2016). Stayed there for months. Just about got to 8mg again.
As stated one day if activity then a more restful day helps keep muscles from getting too sore. Good luck🌻
Welcome. The aunties have said it all in their introductions. This forum is brilliant and you will learn so much from every member. We are all different and the PMR or GCA affects everyone of us differently. I can recommend you read all the daily posts and perhaps while you are adjusting to a slower pace of life take a look at past posts. All will contain nuggets of info which will serve you well on your new journey. You will need to become an expert in this field because sadly the professionals don't understand how this illness really affects us. Try not to feel angry or frustrated with yourself. These emotional responses will only feed the PMR. As an experienced practitioner of yoga you have the inner wisdom to positively influence your health. Perhaps you could adapt your yoga practice so it is less physically demanding and focus more on chakra work, the breath and energy flow? Accept that steroids are necessary (unfortunately). Things will settle down. Namaste.
Thank you so much for your email....the insight in your email is priceless for me...& yes I will try to not get angry or depressed over this hyjacking of
It is very likely that you need to stay at your current level of pred for a bit longer, 10 mg you say kept you comfortable but a reduction of 1 mg didn't work? The disease is still active. However what you can do for yourself is to understand that you have a real disease, even though it is invisible. It's just as real as a bad case of flu, or a broken limb. If you had something like that you'd be taking it easy and other people would understand that you need time to convalesce. PMR is no different, just harder for people to understand. Pace yourself. For every period of activity make sure, whenever possible, that you have an equal period of rest. I have found that even a pleasant social event can be surprisingly tiring. Which doesn't help with the aches and pains of PMR. The good thing is this time will eventually pass and your stamina will improve. You'll be able to do more than the minimum of physical activity and start to feel more like yourself. But for now, recognize that you are a poorly bunny and be kind to yourself. Don't beat yourself up because, for the time being, and maybe for quite a long time, you can't do what you have been accustomed to.
Recently I was asked about my joints by someone who knows I have PMR. When I explained that it wasn't my joints, but an inflammation in the small blood vessels in my body a flicker of understanding and sympathy flitted across her face as I think she got for the first time just how insidious the effects of the inflammation can be. But we patients have to understand that as well.
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