Officially PMR

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.

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.

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?

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...

Thanks Eileen for your concern.  I'm having second thoughts with regards to the tooth sensitivity which comes back when I think the Pred starts to wear off.  Another point... My left shoulder starts to act up... Same side as teeth!  Plus I have a cap on that side as well... Connection??? 

No idea! Out of interest though - have they ever checked your BP in both arms? GCA can cause similar symptoms to subclavian steal syndrome and both can interupt blood flow to one side - and poor blood flow to nerves causes pain...