Hi I was diagnosed in May this year and put on 20mg for 5 days then 15 mg for 3 weeks with a view to reduce every 3 weeks. I'm down to 10 mg at present.But Lately I have been getting really bad back and ribs muscle spasms and when they contract I get breathless and getting out of bed in morning is so painful. I wonder if this is some kind of flare up. I was on 10 mg , but i did hover between 12.5 and 10 mg for about 8 weeks and then reduce to 7.5 re Dr. After about 4-5 days muscle spasms kicked in. I increased back up to 10 mg. a week ago but still have the spasms. After reading on the posts here I am thinking maybe I should increase to 12.5 mg and see if it helps to stabilise . When I saw my Dr last, about 2 weeks ago, she suggested heat pads etc to help with the spasms .but continue with reduction. Have tried heat pads with slight improvement.
Any thoughts would be great.
Also I am lucky enough to be able to attend my first meeting at Port Solent on Monday, so really looking forward to speaking to others with experience.
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9lives
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Despite the fact that I'm going to sound like a boring old f*** I'm going to repeat what I said in last post to you. 2.5mg drop from 10 to 7.5mg is too much!
Would suggest the timescale of pains indicates a flare, so suggest back up to 12.5mg would be a good idea.
Do you only have 2.5mg tablets? If so, please ask for 1mg ones, that then gives you more flexibility with your reducing.
When, and not before you feel okay again, try reducing by 1mg. Even if you still have only 2.5mg tablet at least cut them in half, unless they are the coated ones of course.
Your Dr may want you to reduce in 2.5mg steps, but it's not realistic once you get to lower figures! Just ask anyone on here who's been through it. You might have to have a short, sharp discussion about that!
I find heat pads work for my back and knees, but that's normal wear and tear - not PMR.
I am using the Dead slow and nearly stop reduction plan for PMR. Began Prednisone Feb 2016. 20mg to 15 in 2 weeks and now about 5 weeks per mg tappering down. But I held on 12 for 2 months for my ESR blood draw which I have monthly rose from 17 to 23. So just slightly elevated. Was 60 before starting treatment. I just got results back yesterday from this draw and is 26 but this time I feel good so I'm going to go on to my 3rd week tappering to 11.
Any thoughts on tappering if ESR elevated slightly but body feels good. ( Relatively speaking)
You seem to be doing really well on the reduction Dsns, I'm so pleased for you. Having read so many posts that say similar. Im starting to now understand this pmr a bit better. I see you have a monthly blood check so your Dr can be aware of any changes. I only had a blood check at the beginning, when being diagnosed. None since then. I guess as you're feeling good then going down to 11 mg seems viably.
I just organise my own blood tests phone up the medical centre and ask for an appointment for a blood test. No one has questioned it yet! The nurse and I decide which ones I should have and also discuss how they should reform the NHS. I must admit I am becoming rather addicted to blood tests and get quite excited about seeing the results. Apart from ESR and CRP they all seem pretty normal but I still have that little flutter of excitement. In fact I saw a new rheumatologist last week and she has suggested I have twelve different blood tests, so I am really excited!
It may just be that my surgery are too lazy to check what I am doing, although a doctor does look at the results and sometimes comments. I ask for a printout of them as well. No wonder the NHS is short of money!
Mikldiamond - ESR can increase for all sorts of reasons including a common cold, bad bruising or other trauma and a whole range of other thing including the sample being not looked after properly!
You shouldn't knee-jerk react to a raised ESR and raise your dose but wait and get it checked again to see if there is a trend. I personally think that is also a good way to go about it if you feel OK and want to reduce too - wait a week and see what the ESR does, if it is still rising then don't reduce any further and monitor the trend. You may FEEL fine but if the dose is not quite enough to manage the daily addition of new inflammation, the dripping tap will eventually fill the bucket and overflow. If you have continued reducing then you don't know where that was.
My blood markers have always run quite high in comparison to others, apart from at the start of treatment on v.high levels of Pred, so maybe I'm not the best person to answer!
My current GP, older and wiser than original one, always says symptoms are key - ESR is only a guide. It can be affected by many things - colds, minor injuries, stress and other inflammatory problems - like arthritis!
However, if your markers are increasing month upon month, best not to ignore them completely, it could be a sign that something is not quite right - unless you can identify anything else that could be affecting them. Mine went into the 30s part way through my treatment, and doctor assumed it was GCA flare, but actually looking back I realise it was stress related - I had no symptoms.
Might be worth just putting your current taper on hold for a week or so, whilst you get another test. You can just repeat the last week's tablets again, no need to go back to the very beginning.
As you're feeling quite good at the moment, don't jeopardise it for the sake of dropping 1mg.
For your response, as you rightly said earlier and from what I'm reading on this forum i need to take things very slowly.I have started back at 12.5 mg today and will stay there until My body feel ready . I don't have 1 mg tablets, only 5mg white and 2.5mg coated so will ask my doctor for some. Just hate being in pain all the time.
This site is so invaluable, can't imagine where I would be if I just took Dr advice.
If you are mixing coated and uncoated tablets you may have a problem there - the coated tablets take up to 6 or 7 hours to be absorbed, the uncoated reach their peak in the blood after 40 mins to 2 hours. By mixing them you may not be getting a high enough peak to really hit the morning inflammation hard enough. One way of dealing with that might be to take your coated tablets in the evening before bed and the rest next morning - that would have the pred all releasing closer together. I did discuss it with a rheumy a couple of years ago and she felt it was probably worth trying.
Another boring old f^*t here too - that is far too fast a reduction. The most sensible reduction suggested by doctors keeps the patient on 15 mg for 6 weeks, 12.5 mg for 6 weeks and 10mg for a year. Even then, patients flare! We think FAR slower works much better.
However - it may not be just PMR. It sounds as if there may be an element of myofascial pain syndrome there, which causes trigger points, knots of inflamed muscle fibres, to form in shoulder muscles, about rib level and in the lower back. These can cause muscle spasms and irritate nearby nerves leading to referred pain in the areas the nerves supply. While it responds to higher doses of oral pred it tends to return as the dose reduces and actually responds far better to local treatments such as steroid injections into the area of the trigger points or manual mobilisation of these knots to disperse them.
But if you have such problems, whether it is the PMR or myofascial pain syndrome - it is not going to work if you try to force a reduction. I did find that a hot water bottle over the spasmed muscle helped a bit but it is only a temporary solution - as long as the cause of the muscle spasm is still there, they will come back
Some of us have benefited from Bowen therapy, others not. I find a good sports massage therapist or physiotherapist who understands myofascial pain can work wonders though you may feel worse before you feel better (it releases the cytokines that are in the trigger points and it feels like a flare of PMR when they get into the system).
I was interested to hear about your rib muscle spasms. I started having these at the start of the conventional neck, shoulder and arm pains. The specialist was puzzled by them but never came up with an answer. They were extremely uncomfortable: leaning forward while seated, for instance, to pick up a cup of tea and the entire top upper torso, especially the back went into violent spasm - I imagined this is perhaps how it felt to be flayed alive! The spasms went on for six months and then gradually faded away over about a month or so. There seemed to be no direct connection with tapering down (could the early heavy steroid doses have triggered it - 25, then 20, then15 over a month before starting a very slow 1mg reduction per month pattern).
When the spasms eventually faded away they were replaced by a dragging, heavy feeling in the same muscles, again especially in the back. They started about an hour after getting up in the morning. By the evening these were so bad I had to lie down - which cured them immediately but standing up again revealed they were still there. The best medicine was a night's sleep. I also found myself feeling very sleepy for a lot of the day and, most peculiar of all, sporadically fuzzy (feeling drugged?) and unable to walk in a completely straight line. Today, two years after starting the PMR and 18 months after the latter's symptoms came to an end, I still have the heavy dragging back muscles and to some extent abdominal muscles.
Your Dr's heat pads advice worth a try. My specialists still stuck for an answer.
I hope you beat the PMR soon and don't find your spasms turn into the dragging muscles.
how awful for you to be in such pain for so long , the spasms I suffer are intolerable when moving, as you say to pick up a cup from the coffee table. But it only last for seconds. I also have them when getting out of bed in the morning. I have to roll over and then try to get up on my side. They seem to improve a bit as day goes on, but if I have rested for awhile they return as soon as I move. Strangely enough I found keeping active was better.
They made me a bit breathless cos the spasms were around my rib cage area.
They only started about two weeks ago, and about 5 days after my taper down from 10mg to 7.5 mg. I have since gone back up to 12.5 2 days ago, as this is where I have been comfortable in the past and so far the spasms seem to be disappearing. But I still am aware they are in the background, as my back and ribs are still stiff and sore. But I don't t have that heavy dragging feeling that you Describe. Or fuzzy head. Poor you
Yes the heat pads help also soak in a bath with mineral salts.
Sounds like you are getting there
Thanks for sharing, it's good to know we are not alone X
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