So glad to find this site. I was diagnosed 5 months ago with pmr.
Dr started me on 20 mg of pred for 5 days then 15 mg for 3 weeks . Then to taper by 2.5 every 3 week. Well it's been a roller coaster. But I'm now at 10 mg , after trial and error . Dr said if problem reducing then go back to last dose for a week and try again.
I'm trying to get to 7.5 mg but it's proven a real problem. Not sure if my symptoms are pmr flare up or pred withdrawals. But my ribs at the back are very sore and feel tight, so breathing is restricted . And the pain I feel trying to get out of bed I. The morning or up off the floor, from yoga pose , is excruciating.again around the rib/hip area. Bit like a muscle spasm I've never felt pain like it. Dr says it's because my muscles have been over worked and to try and work through it if I can. I also noticed the pain can move around my body and wonder if any of you expirence this at all.
Dr were very quick and efficient in my diagnosis ,so can't complain there. but now I feel they are just wanting me to reduce my meds and get off the pred .
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To get to 7.5mg you should not reduce by 2.5mg it is much too much and will only cause problems. The ideal reduction I reckon is half a mg a month once you reach 10mg. Some people do reduce by 1mg but I am too delicate a flower for that.
Your last sentence sums up lots of people experience. What doctors don't seem to realise - once you've started Pred (except for a few illnesses when only a short treatment is used) it's very difficult to get off it quickly.
Plus, if you have PMR then there is no point in trying to reduce too quickly, because then the Pred doesn't control the inflammation satisfactorily and the patient ends up in pain!
Would suggest that you stay at 10mg for longer than 3 weeks, say double that time, and then when you try reducing again - try 1mg a time. The recommended taper is not more than 10% drop in any one go - if you try reducing from 10ng to 7.5mg that's 25% - much too high!
Might also be sensible to use a slow reduction plan - that is over a number of weeks rather than overnight - much easier on the body.
Pred can affect your muscles, and working through it may not be a good idea. Yes you need gentle exercise, but not repetitive nor too strenuous.
Your doctor may have diagnosed very quickly, and good on him for that, but he doesn't seem to know how to treat it - unfortunately.
Hope you soon feel better, but don't consider reducing whilst you are still in pain.
Thank you piglette and Dorset lady for your response. I will follow the advice that you have given me and reduce on a much slower program.. Wish my Dr would understand this.
It's really nice to converse with well informed people who understand what a struggle it is.
Really sorry to hear you have been diagnosed with PMR.
Just to put it into some perspective, I was diagnosed with basic PMR in December 2014, so I have had it now for over 18 months. It took me six months to get from my starting 30mg to 10mg, but now over a year to get to 7.5mg which is where I am today. Also, I am a man, and it is thought that generally speaking men have it easier than women. Not sure whether you are male or female!
I can but endorse what DorsetLady says. It really is a case of going ever so slowly, and being ultra patient, as well as being kind to yourself. You will see lots of advice to this effect on this forum. Sometimes it's a case of one step forwards, two or three steps back, so a smooth ride to remission, if you get there, is no given!
Thank you for your comments. Am sorry to hear you are also suffering this awful pmr.
I am female 64 years and always been active so this is really hard to adjust too. But reading other posts and yours they are all saying the same, to reduce very slowly. I wish my Dr has been more informative but she did not explain the full extent of going on steroids.
I want to add that the pain you describe from exercising sounds too severe as well as your workouts. Take it easier on your self. This is more than just losing muscle. The ligaments can be damaged and weakened too and you need to heal. I exercise about 3 minutes and stop if it's weights and I am more concerned with bone loss but even this little bit the muscle returns. This was my second flare in 12 years and it was everywhere from head to toe. Since I had not been diagnosed for PMR the first time I suffered greatly by the time I started on Prednisone. You don't want to go there. Take enough Prednisone to keep the inflammation in check.
Thank you for your advice, I will go easy on the exercise, I will do just a small amount of yoga. stretching to start with and then see how I go. I enjoy walking, which I understand is good to do.
Your flare up sounds real bad, I feel for you. I will keep my pred at 10mg as this is where my body seems to be in check.
From your message it sounds like you have had pmr for a long time, and that it was not diagnosed immediately, that must of been very difficult for you. How did you cope with the symptoms ? I saw the Dr after about two months of stiffness and when I finally could not get out of bed . So glad I did.
I had a remission for ten years until this June. It was incorrectly diagnosed the first 2 year episode so I was off to a bad start without Prednisone and my entire body flared this time. My numbers make it look like Lupus but none of the other symptoms of Lupus. The prednisone I have only reduced to 12.5 from 15. It took 2 months to get into an RA in the USA and I am so great full I did not get gca when I knew nothing about gca or PMR. I made the mistake today of thinking I could carry a half bucket of soil in my garden and was not ready. Tweaked my lower back and the Prednisone is not taking away that pain. I too must take time to heal.
So you have had pmr return after many years, how awful for you. Do hope you get some relief from the pain.
I googled lupus and I see the similarities.
Just did the weekly shop, all those bags.!! But some one posted on here and suggested use more bags and put less in them, which I have done, but still a bit sore in my ribs from it. Today I am totally resting once the ironing is done.
Even better - put everything back in the trolley and take it to the car. Then unload things into the boot a bit at a time, not in heavy bags, and unload it a bit at a time too.
And EVEN better - ask for someone to help you take your shopping to the car. There's no shame in asking for assistance.
No reduction of pred should be more than 10% of the current dose - so now you are down to 10mg that means somewhere between 1/2 and 1mg. Not 2.5mg.
It also sounds as if you may have a touch of myofascial pain syndrome which is often found alongside PMR. The fascia of the muscles - that transparent membrane you take off your chicken breast - is inflamed and leading to muscle spasm. If you were to visit a good physio or a sports massage therapist they would probably identify your back muscles are hard. This eventually leads to formation of trigger points of knots of hardened muscle fibres (actually concentrated areas of the same cytokines that cause the inflammation in PMR except there they are all through the body) which are in pairs in the shoulder muscles, about rib level and in the lower back. They, in turn, irritate nearby nerves and lead to referred pain as well as muscle spasm as the muscle tries to protect itself from further overuse. As for trying to "work through it" - no! Really, it isn't his pain! It could also be an element of sacroiliacitis - I developed that and the pain was so bad I ended up in hospital for treatment!
It often responds to higher doses of oral pred but then returns as the dose reduces and responds far better to local therapy - steroid injections and manual mobilisation techniques. Many of us have found benefit from Bowen therapy - doesn't help the PMR but it often helps with the add-ons so is worth a try - you will know in 3 sessions if it is going to make a difference to you - it may not be complete relief but there should be some change. If there isn't - there is probably no point carrying on.
And the bottom line remains: you are not now reducing the pred relentlessly to zero. You are looking for the lowest dose that manages the symptoms for the moment - that is all pred does. It has cured nothing. As long as the underlying autoimmune disorder that causes the symptoms we call PMR is active you will need some pred to manage the new dose of cytokines that are shed in the body at about 4.30am. There are two reasons for flares. Either the activity remains steady and you reduce to too low a dose to manage it or you stick at the same dose and the activity increases to a level that the dose you are on is no longer enough to manage. Either way the PMR pains return.
What do you mean when you say the pains move around your body? Muscle pain or joint pain?
And a PS I nearly forgot: PMR is NOT a short-lived need for pred. It is a chronic illness and pred is needed for anything from 2 to 6 years, sometimes even longer. Nothing you can do will speed the process of the autoimmune disorder going into remission which it does for 75% of patients in up to 6 years. A doctor trying to tell their patient to get off pred quickly is like them telling a patient with rheumatoid arthritis to stop their DMARD because their RA has gone away now. PMR does at least usually go away eventually - but it isn't going to happen in under 2 years unless you are very exceptional!
I am learning so much from this site already, I think you could be right about the myofascial pain, it does make sense. Also I will reduce my yoga exercises/stretches for the moment. Basically just take it easy. I enjoy walking so will do more of that .
I am on 10mg pred. so will stay here for a while and then, as you say reduce by 1/2 or 1mg, and see how it goes.
The pain in is in my muscles and seems to move about my body, one day its in my right side/ribs and will be painful/ache for about 1-2 weeks then it will be painful in my left hip area again for 1-2 weeks. its always these same areas that alternate, some times it will ache in both areas at the same time. It sound like the myofascial pain that you mentioned.
I am now understanding so much more about this pmr condition. thanks to this site, and this is really helping me to help myself.
It's my specialist subject! GPs have to know about far too much these days - and none of them have time to read about what their patients have. Often they THINK they know all about it - but have missed new work or don't listen to their patients. And we are, after all, the real experts...
That pain working around the body … yes, I have had that too. If I lie down I can kind of track it as it migrates from place to place. I decided this was normal given the circumstances and as I'm weaning off the steroids that roving pain/ache is becoming less.
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