Pain on reduction

Hallo Madge and hope the pain is easing.

Yes, I have had this at various reductions, most recently from 8 to 7.5. It did right itself and my GP said he thought he'd give it a week to settle before increasing the dose.

According to my schedule which is not written in stone, I should have reduced to7 last Wed. but have delayed as my hip and thigh ( only one side so what about the bilateral pain that is mentioned so often. Mine is just a moveable feast as they say.)

The advice we are always given by so many on here is to listen to our bodies though, I must say, I often have firm words with mine and sometimes it listens!

God luck for a pain free Sunday. BettyE

Thanks for your quick reply, Betty. It is always good to know that one is not experiencing something odd and unusual. I will see how things go over the next few days.

Hi Madgewildfire,

I've been very, very lucky and gone through a text-book reduction (so far) with the exception of 7mgs to 6mgs. I had about 6 days of what I call 'background' pain when I first dropped to 6mgs. I decided to work through it because it wasn't too bad (although I would have adjusted if it had been too bad) and luckily its all settled down again. I've found 6mgs to 5mgs absolutely fine even though the percentage is slightly higher. Strange animal this PMR!! Hope you're soon able to get back to your reduction regime, pain free.

Lizzie Ellen

Hi Madgewildfire!

Good to hear your reduction is going fairly well - but did you just drop from 7mg every day to 6mg every day? There has been a lot of discussion about reducing over the past few months which I'm sure you'll have seen.

I posted last weekend about a statement I found in a rheumatology medical textbook/publication that no drop should be more than 10% of the current dose and 7 to six is more in the region of 15% so a better plan would be alternating 7 one day and 6 the next for a few weeks. There are some people on this forum who would drop to 6 one day the first week, 2 the second and so on, distributing the days with the lower dose evenly across the week, others would even take 2 weeks at each drop of an extra day.

The other thing I'd say is that it was decided in a thread a bit back that pain that starts after the drop but then eases over time is most likely to be the steroid withdrawal but pain that starts and then steadily increases is more likely to be the dose being too low or the drop too fast. It was felt that giving it a couple of weeks was a fair trial - if you're still in pain then, go back up to the last dose you were comfortable at and then try again, with a smaller drop if possible or using the very slow drop pattern I mentioned before. If the pain has gone - you've succeeded with this drop! Then give it a good gap to settle down before the next attempt.

And remember - the weather is changing quite dramatically at present and that may have an effect on some people!

Good luck,

EileenH

Hi again Madgewildfire,

I'm on the reduction method Eileen mentioned, 1mg over a period of 7 weeks ie: drop to the lower dose once in the first week, twice in the second and so on. And even on this slow reduction I did feel a bit of a punch, as I mentioned before, between 7mgs and 6mgs. As I am now on 5mgs :wow: I'm thinking of taking the advice from several posters to take it a bit slower. I may go with Eileen's comment and take 2 weeks at each drop of an extra day. Good luck.

Lizzie Ellen

These replies have all been very helpful to me and I will be trying the gradual reduction that Eileen and Lizzie-anne mention. Strange, Lizzie-ann that we both felt the difference when reducing fron 7mgs to 6mgs. best wishes, Madgewildfire

Hi ladies,

Just occurs to me - the 7mg/day dose is around the region of \"what the body produces normally\" level. There is no real solid evidence that I can find for the claims made that at this point you should have no side-effects and also that this is the point at which the adrenals kick back in so stopping from here on in should not be too difficult. However - if that is so, this might be the reason this point poses a problem for many. It is the adrenals having to \"fire-up\" again (putting it crudely, it's rather more complex than that!) and maybe being a bit behind-hand that cause the trouble. A long slow and steady reduction, perhaps taking it easier than usual (as MrsK always recommends) and holding out against the discomfort as long as it isn't too persistant may be the answer.

Just a thought.

cheers from snowy Italy - the view from my computer is quite pretty today! (not in the village, just up the hill)

EileenH

Can't feel the adrenals kicking yet :lol: Even my Consultant said lots of her patients find 7mgs to 6mgs tough and she doesn't know why. What I did find strange was that at 15mgs I lost my appetite and consequently (much to the envy of fellow sufferers) lost weight! Then, at around 8mgs the appetite came back with a bang! I was like a chocolate eating piranah, if it was sweet and bad for me, I craved it. I could munch my way through a whole packet of biscuits or a cake in one go :cupcake: and I felt awful afterwards. Then suddenly, when I reached 5mgs the appetite vanished almost overnight and I crave lettuce and cucumber now. What a puzzle life is. By the way, the view from my window is a beautiful, sunny autumnal scene with a garden badly in need of some TLC. Quite chilly though, we had our first frost last night - heating's on, two pairs of totes on my feet and hot water bottle at the ready. I'm getting like my Mum - help!

Lizzie Ellen

Hi Lizzieellen - that's strange, I craved carbs every afternoon during the worst part of the PMR pre-diagnosis. I didn't know what I wanetd, just something! Since I could hardly move I put on weight needless to say I could only eat gluten-free cakes and they are LOADED with calories, believe me and are not satisfying in any other way). At 15mg I was like you - appetite went, no cakey things, bring on the salad! I could eat a meal and be satisfied. I'm at just under 9mg now and not hungry all the time - more my mouth wants something to do :roll: :lol: But I haven't really lost weight I don't think - except since when we were in S Korea I'm sure the rolls of blubber around the midrif have deflated a bit with the almost no carbs (only rice) diet there. I'm consciously trying to avoid carbs now except some fruit. And the occasional square of dark top quality chocolate (I don't eat junk choc) but I made a serious error yesterday - forget to get another bar of Lindt. All gone chocolate :cry: It'll have to be a glass of red wine instead - nothing new there!

EileenH

I know this is going to sound awful, but it can take as long as a year for adrenals to 'kick in'. Length of time, I gather is something to do with how long you are on them.

I wonder do the medics ever test adrenal function when they think it has kicked in?

Because I did not like taking the white ones, I went from 7.5mg to 5mg took well over a month on a sort of alternate day programme. It worked for me, but that is GCA and not PMR.

I skipped 7mg to 6mg (naughty) went, 7,7,5,7,7,5 the first week, then 7,5,5 etc

I am now stuck on 3mg, was going to take another drop, but now have Vit D deficit (Yes, I asked specifically for the test again, as I was experiencing lots of muscle pain, but no stiffness - so argued it could not be PMR after this length of time).

Everybody over 60, irrespective of health problems, should ask for the Vit D test. Got that piece of advice from impeccable sources.

Over to you Eileen to explain why.

Oops

meant to type 7.5mg then 5mg - but you all get the idea.

Sorry

Hello all

Just came across a site which gives what I thought was the best write-up yet I've seen on the adrenal glands and tapering steroids and thought you may be interested. Have a look at 'Churg Strauss Syndrome and Tapering Steroids' and click on the 3rd link '.........About CSSA. Different disease but also auto immune and also treated with steroids. I haven't read it all yet but having just read all your posts on the subject I got all excited and wanted to share it with you! :lol:

MrsO

MrsO - was it the article by Marian Mesker on the CSS Association site you meant? It came up on my search as the first link - just in case anyone is confused.

EileenH

Hi Eileen - depends which search engine you use but yes that's the article. It's the first time I've seen an article that advises which vitamins the adrenals need and confirms what we've discussed previously that sugar, carbs and caffeine should be restricted. I will read more later but it's time for the Sunday scones - naughty carbs I know but they're so yummy!

Just been for a little walk and it's very cold but, unlike you, no snow here yet thank goodness but the sheepskin-lined boots are on order - don't want a repeat of last winter's chillblains. :snowball:

MrsO

Thanks for the link Mrs O Im getting more interested in the old adrenal glands now I am getting a bit lower on the steroids and the article was very informative

I am assuming that the first time I had PMR my adrenal glands had no trouble starting work again as after a year starting on 20mg I was down to 1mg for my final year

I am eating all the right things which I did before but now I have cut out any extras and have tried to increase the protein mainly fish and cut out the carbs and have lost a few pounds and am feeling more active

My old horse now has an illness where her adrenal glands are over producing cortisol !!!!!!!!!!! so I am going from PMR to Veterinary websites and I will be getting confused as to what I should be doing for me and her !! She is on a human drug just to make things even more confusing

Just hoping we dont have such a bad winter as last year even though we live in the sunny south !!

Best wishes to all

Mrs G