I went to the rheumy today he confirmed PMR. He said to reduce my pred 1mg per month .I am currently at 10mg
That sound a but on the fast side. It's recommenced to reduce by no more than 10% - once you get below 10 mg thats less than 1 mg? If you are using 5 and 1 mg tabs you can cut the 5 in half and perm them so the reduction is by 0.5 mg. Best of luck but dont rish it.
Hello carol, I agree with oregonjohn your reduction sounds rather forced. You say that today your rheumatologist confirmed PMR yet you're already on 10mgs.
i only ever reduce by .5mg and not 1mg.
I stay on each dose for 6 weeks minimum.
and I follow Eileen's go slow and almost stop reduction regime.
don't rush reductions as you could well end up with a flare, and if you get a flare you'll have to up your preds and start reducing all over again.
best of luck, christina
I have reduced from 8 to 6 to 4 and now trying to go to 2... Over several weeks. Again my biggest challenge is the fatigue. !! Walking the dogs just now felt like I was running a marathon ! Trying to decided just when I want to take that 2 mg. yesterday I took the 2 at 4 pm but I decided to take today's now.. 2:00 pm. Found that Prednisolone has a half life of 18 to 36 hours ( that's at 5 mg). Found another paper saying 8 to 12 hours !! Also found one paper stating prednisolone as a short acting and another as a intermediate acting...
Seeing my primary this afternoon... I'll see what she has to say.
best to all!!
Perm them?
Not the hair version but permutate (change the order) i.e. for 9mg use 1x5 +4x1mg, for 8.5mg use 1x5mg plus half 5 (2.5mg) plus 1x1mg etc. Should have said Don't rush it - remember it only covers the symptoms and the under lying 'problem' can go on for quite some time (min 1 year!) You could overshoot the minimum dose required to 'contain' the symptoms - slow but sure is the only way or you could end up in a worse position.
Here is a link - on this website - to a number of resourses
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Got it thanks Oregonjohn... hair very funny!
I really did not agree with this Doc..He asked me why I was there I told him my symptoms and treatment prescribed by my primary he asked if she told me what it was no then he asked did I know I said PMR he agreed with me score one for Google all this with no exam or bloodwork to confirm.I don't think I will go back to him .Ten minutes with him a script and what I thnk is bad advice.
Hi Carol, sorry that you have PMR. It's an exhausting disease. However, it can be dealt with. Your physician's plan is, as others have mentioned, very agressive. I was diagnosed 18 months ago. I started out at 20mg and got down to 15mg pretty quicky. After that I went down 2.5 mg per month until 10mg. After that I had fits and starts. Do NOT try to get off of prednisone too quickly. It will backfire big time--it's one step forward, six steps back as you have to go up much higher than your last dose to get rid of the flare. I kept trying to wean too fast and I was always sorry I did. I finally successfully got all the way down to 2mg in less than a year, but the drop from 2mg to 1.5mg threw me into the worst flare ever and I had to go back up to 6mg and start over again. I then dropped in 0.5 mg increments over the next eight months until I successfully was taking 1mg/day. Then I went to 1mg every other day and then to 0.5 mg every other day. After 18 months, as of this week, I'm off of prednisone and both my sedimentation rate and CRP are at low normal levels. I can't imagine anyone can get over PMR (and off prednisone) any sooner than that, and from what I have heard in this forum even 18 months is really fast to wean off prednisone. I'm not celebrating--I'm going to wait a few weeks to make sure this recovery is for real. You will do yourself no favors by rushing your treatment. Take a deep breath and do not let your physician push you to wean faster than feels right—and your body will let you know.
There is nothing you can use to "confirm" PMR - it is a clinical decision reached on the basis of clinical history, symptoms and eliminating other possibilities. So don't rule him out on that basis.
However - that's very fast and inflexible reduction advice. He should have told you to reduce slowly (and below 10mg I don't think 1mg at a time is slowly) to find the lowest dose that manages the symptoms. No reduction should be more than 10% so will be less than 1mg as you reduce further - but it will possibly work if you use the "dead slow and nearly stop" approach in the Replies part of the thread Oregonjohn gave you the link to.
Slow down!!!!! You are at the level where your body must start to make its own corticosteroid, cortisol, again. If it hasn't settled down to normal function it will cause the signs of adrenal sufficiency once you are below about 7mg - and the most obvious of them is extreme fatigue.
And again: no reduction should be more than 10% of the current dose. You are trying to do 50% reductions. 1mg is a big jump - 1/2mg is better. It isn't a race - people who try to rush the reduction often end up missing the right dose and causing a flare needing a return to high doses which is the opposite of what you were aiming for.
Forcing the reductions at this sort of speed also puts you at risk of an adrenal crisis - and they are NOT nice.
I'd concur with Patpom - I didn't get clear advice from the doctor and thought I could reduce 1mg per month but when I got to 5mg I was getting the symptoms again and had to go back to 7mg. It's helpful to hear how you've done it Patpom - no one explained the process to me! I'll start to reduce by 0.5 every 6 weeks and see how it goes.
There are so many posts about reducing on this forum I can't believe you haven't seen at least one of them!!!!!
Doctors don't know you can't reduce like that - it is how you reduce pred doses in other illnesses but PMR is due to an underlying chronic autoimmune illness that isn't touched in any way by the pred - it is used to manage the symptoms, not sure anything. Many many patients have gone down, and up, and down and... When they try the slow reductions we suggest they manage to get to lower doses with fewer problems. Some doctors are beginning to get the idea as we tell every patient we come across about the idea.
Oregonjohn already posted this link - here it is again to be sure you see it:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
There are all sorts of links in the first post and in the replies the description of a very slow reduction programme that has worked for many people and is also approved of and even used by specialist rheumatologists. Until I used it I got stuck at 9mg. Now I'm down to 4mg. 3mg is too low - get aches again.
Hi Eileen, we've spoken about this before, but wondered if you could remind me:I'm Heather in Zimbabwe with only 5mg pred-sized pills available. After endless attempts to reduce my pred, this week I went from 12.5 to 10. I hope and long to reduce to the next level at the end of May. But with forum concensus recommending no more than a 10% drop, how do I do that with my 5mg tablets?
Congrats hope all goes well foryou.Yes I do agree that his planis to aggressive i plan to take a slower approach,
If you have managed to 10mg - do stay there a bit longer than the end of May and let your body catch up a bit! That is often a sticking point even for people with 1mg tablets!
There is no reason why you can't use my "dead slow and nearly stop" schedule but slow it down even further by repeating each line, especially as you get closer to the alternate day old/new dose
In case you've forgotten the link, it's here in the replies posts
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and there are some new additions to the links post at the beginning.
By that I mean start at the 1 day new 7 days old - or even more, 10 maybe, and do it at least twice before moving on to the next one, 1 day new, 6 days old. As you get down to about 4 or 5 days between, do them 3 times and so on. You will feel if you are OK and stop anywhere fr a while any time you think it would be a good idea. If you start to feel more tired that is a signal to stop and mark time.
I'd aim for reducing the 2.5mg over a period of about 3 months - so maybe print out a 3 month calendar and write it down so you can see what you are doing.
So glad to hear you have got down so far after the sticky start!
Thank you Eileen. Depressed about time schedule and wonder how much hair I will have left by the end of this hideous journey. Pred/PMR side effects have totally knocked me into miserable silence on this forum in the past few months. Didn't want to share my misery. Pain in neck and head has been so intense last month had a brain scan followed by neck MRI to ensure nothing more sinister lurking. this Thursday had first of two cataracts done (wondered if headaches were from eye strain, but optician told me cataracts can be exacerbated by cortisone). So looks like "aluta continua"!
On a lighter note, Happy Mother's Day to all mums from Africa where it is celebrated today.
Happy Mother's Day from here too - only the UK maintains Mothering Sunday as the day for celebrating mothers I suspect!
Naughty, naughty Heather! The forums are the places to come and share misery and have a rant and a paddy as well as for discussing nicer things. A trouble shared is a trouble halved and anyone here knows where you are coming from - it doesn't fall on deaf ears and you will get a virtual hug. Perhaps not as nice as a real live one but nevertheless comforting.
Your optician isn't quite right - there are two sorts of cataracts, the sort caused by pred is different from the aging variety but it is possible that if you already have the beginnings of the aging variety it will progress faster in some people taking pred. There are worse things to have as a side effect. I am desperately short sighted, I put my specs on to go to the loo if it isn't pitch dark, and would very much LIKE to develop cataracts as it would mean I could manage with just reading glasses instead of having them on my nose from dawn to dusk! I know - I'm strange!
I know you have a physio available - is there any chance of a Bowen therapist? If not - discuss myofascial pain syndrome with the physio or read up on it and go to the GP. It is common alongside PMR and when the shoulder trigger points are affected it can cause referred pain into the neck and head. Traditional approaches would be cortisone injections into or manual mobilisation of the hardened knot of muscle fibres that form at the trigger points - they are concentrations of cytokines, the same inflammatory substances that cause PMR when they are systemic. A good physio should be able to use the manual approach or even a good massage therapist would do - you may feel generally worse before you feel better because of the release of the cytokines into the system but once it is relieved you can usually get away with a lower dose of pred. Higher doses of pred help MPS but the pains often return as the dose reduces - and that may be part of the reason you have had problems in the past.
But don't suffer in silence and alone in future - come here for a whinge and sympathy. We've all been there - or anyone who hasn't will almost certainly get there at some point!
By the way - someone on another forum said her daughter took her to get a wig and it was an amazingly releasing experience. No more bad hair days either...
Well I have seen them I was just relaying my Docs advice never said I was going to take it