cross your fingers for me please!

Hi Beev

Yes, I've got everything crossed for you :ok: I can quite understand that although it's quite exciting to think that you are finally going to have a whole day without steroids, it's quite a scary thought being without what has virtually been a 'crutch' for such a long time.

As far as whether or not the Pred stays in your system for 24 hours or longer, Eileen has posted previously that although the Pred passes out of the body in about 12 hours, the actual anti-inflammatory effect can last up to 36 hours! So you can go to sleep tonight knowing and hoping that this will apply to you. :D Are you planning to take about the same amount of time to get to nil as you have going from 5 to 2.5?

Best of luck, Beev.

MrsO

Best of luck, Beev. I know just how you feel.

I have found that the lower I get the longwer it takes me to adjust. Have been on 5.5 for a month and am staying put for a bit longer before trying 5.

I've got my fingers crossed for you Beev. I started the reduction from 3mgs to 2.5mgs a few weeks ago but have had to put it off for the time being. However, my reasons for staying on 3mgs are due to other things going on in my life just now and it seemed the sensible thing to do, whereas yours is a natural reduction so I'm sure it will work for you :magic: I'm sure that this lovely weather and the feeling of Spring in the air will help you :rose: . Take care and very best of luck.

Lizzie

Yes - MrsO is right - the steroids themselves are actually excreted within a few hours but the inflammatory effect continues for some time after that. It depends on the person and can be from 12 to 36 hours so some people will get some stiffness back the next day, others can manage two days as the stiffness appears overnight before the next dose. In fact I find that I am a bit stiff in the evening though nothing major and now feel better the next morning, which I attribute to my adrenal glands now starting to work again after 12 months on alternate day therapy (they get a good 36 hours out of 48 with no steroid action). The feeling better in the morning started a couple of months ago and has increased steadily.

If I have a wobbly day I do occasionally use a single dose of ibuprofen taken together with plenty of food to reduce any gastric effect. I actually have only ever used the bright pink 400mg tabs you need to get from the GP and the old ones seemed to have a shiny coating on them and never irritated my stomach - it was the only way of coping at all pre-steroids. I have never tried any OTC versions. This also has an anti-inflammatory effect and tides me over to the next steroid dose. It's taking anti-inflammatories longterm which is the problem if you are also taking steroids so the odd single dose shouldn't pose a problem for most people - though some are very sensitive. But neither should really ever be taken on an empty stomach.

Good luck - the lack of smaller pills does make this stage tricky if you want to avoid the 1mg ones.

EileenH

Hello Beev

I hope this works but it is really difficult if you cant take the 1mg ones Personally I have always thought they should be the coated ones as you are likely to take more of them as you reduce

Are there any other painkillers you can take ?? if I have a little achey spell I usually top up with paracetamol and there are quite a few on here who take cocodamol though I never have

It is scarey we become very dependent on the steroids and I always leave mine out in a prominant place untiil I have had my breakfast

Let us know how you get on

Mrs G

You can get both Naproxen and Voltarol in enteric coated forms and I think you can get ibuprofen as well. Voltarol is also available as suppositories which obviously also avoids the gastric irritation! It might be worth having a discussion with your GP about having them available for single dose use just in case. And MrsO will supply info about very anti-inflammatory foods which would also help I'm sure.

Eileen

I'm having a knee replacement in a few months time and I've been taking Arthrotec 50 to keep the inflammation down. Each tablet consists of a gastro-resistant core containing 50mg diclofenac sodium surrounded by an outer mantle containing 200mcg misoprostol (copied that from the packet :yikes: !!) Provided I take them on a full stomach (no problem there :cupcake: :donut: :cake I've been fine with them. My partner also takes them occasionally for gout and they're both effective and non irritant. Basically they're voltarol with a protective coating (as I understand it :erm: !).

Lovely day again, going out to start on the garden :rose: :tit: :ant:

Lizzie

Thank-you all

You are such a helpful group! I'm very grateful.

I woke up with some slight soreness in my upper arms and thighs - nothing to need painkillers for though. I have had some stiffness during the day each time I stood up after sitting for a while, but am able to bend down easily and have no neck pain, which was the worst thing before.

So - so far so good, I suppose. I'm just not sure if these minor aches are telling me to stop the drop for a while? I wonder if I could cause the inflammation to build up - or it could be steroid withdrawal, I suppose.

My GP said my adrenal glands would have kicked back in well before now.

Yes. Mrs O, I am planning to take till beginning September to get to nothing, IF all goes well.

Lizzie Ellen and BettyE, I hope your reductions go according to plan!

I still have that nagging doubt in my mind as to whether this has all been caused by the Omeprazole, which i started a few months before the onset of PMR. I wonder if I should ask my GP if I can change to another stomach protection? Isn't there another thing that isn't a Proton Pump Inhibitor - that works a different way?I'm really asking EileenH this - and whether it is as effective? I am having ongoing problems with reflux anyway, even with the Omeprazole (causes chest tightness and mucus in the airways rather than the usual symptoms).

I would hate to be in a vicious circle of needing Omep because of the Pred but, the Omep is actually causing the symptoms!! On the leaflet, it says 1 in 1000 get joint/muscle pain.

Thanks again all of you.

Beev

You won't want to try this, Im sure but it made me smile when I thought about my over optimism.

I'd been having some, but not unbearable, neck stiffness but the day after my tooth extraction I woke with NO pain in neck and no pain in legs. 48 hours on the legs remain much better than of late but the neck stiffness has returned. So I guess the tooth anaesthetic which numbed just about everything, was what vanished the neck pain, too. Well, it was nice while it lasted but I don't think I'll go to the dentist for PMR treatment.

Thanks, Beev for the reduction wishes and more good luck wishes for yours.

My suggestion of the anti-inflammatories was less for pain relief than to use an alternative to keep the inflammation at bay on the day you don't take the steroids.

Don't know where your GP came up with the idea your adrenals would have kicked in long ago - if you have been on steroids even at a low level it is commonly accepted that it can take up to a year after discontinuing them altogether and some people take longer than others.

I googled proton pump inhibitors alternative and found an article in the British Medical Journal about the massive over-prescription and inappropriate prescription of PPIs and how much it costs the NHS - it's quite easy to understand if you want to have a look.

We did talk about this earlier in the thread \"Omeprazole and things\" and you mentioned then your GP said it wouldn't have been the omeprazole that caused the PMR and you wouldn't have had such a good response to the steroids. Obviously he is not clear as to the difference between \"cause of symptoms\" and \"trigger\". Omeprazole is the PPI most associated with muscle pain and, if I remember rightly, was tried on a load of athletes to see what it did. Something like a fifth of them (I think, it was a lot anyway) complained about muscle pain bad enough to make them stop taking it. They were young, fit and healthy - we are more at risk. It is possible that omeprazole has the worst reputation as it has been used most - but the others are less associated with muscle problems.

There is no reason why you shouldn't at least try a different PPI, especially since you have problems with it - I'd have been asking to try something different before now! There are also other medications that are effective that work on a different principle. However - are they sure that the problems of mucus and chest tightness are reflux? They can be symptoms in PMR (because the arteries in that area are affected). Did that all improve at higher steroid doses? Just a thought.

Eileen

Thanks Eileen

The symptoms went away with Omep before I had the steroids and then all the time during the high doses. It came back dramatically after a few days of the 1mg uncoated when I was starting to reduce from 5mg back in October.

I get the chest tightness after eating - not every time - seems to be worse after a larger meal or fatty things. I have to cough up mucus every day since then. The mucus was very bad over the New Year and has been not so bad since. Sorry - bit graphic.

I wondered about H2 inhibitors or are they not as effective? I also have read that you shouldnt come off PPIs too quickly because they can give you rebound reflux.

I have googled PPIs too and have read similar articles but not that one.

Re adrenals - how can you function if they are not working when you are off steroids??

Beev

Beev

My rheumatologist told me that the adrenal glands are not normally COMPLETELY suppressed whilst taking Prednisolone. Also that your adrenal glands without the artifical steroids normally make the equivalent to 7.5mgs of natural steroid a day. So I assumed that as we slowly decrease the Pred below 7.5 the adrenal glands start to increase back up until they reach their normal cortisol production. Otherwise, just as you have said, how would the body cope when you come off the steroids or even as you are reducing at the very low doses.

MrsO

Eileen, you've got me a bit puzzled.

I thought you were doing your every other day pred regime to get the adrenals going - now you say up to a year. I had been thinking of trying the every other day, presuming I could cope with the arithmetic that is, now I'm wondering whether there is any point in rocking the boat.

I'm sure I'm missing the point here somehow so can you explain a bit more please - otherwise it sounds a bit depressing if we have to wait a year or so once we are off pred. or just on a very low maintenance dose before we start functioning properly again.

GG

Green Granny

Under Useful Medical Information on our website www.pmr-gca-northeast.co.uk, there is an article written in words we can understand (no medical jargon) on

[b:d03e869833]Steroids and what they do

A narrative written by a patient for patients.[/b:d03e869833]

It explains about adrenal glands as well.

All articles that contain medical information on the site are checked by professional medicals in the relevant field.

Hope this helps.

The bit about the year is for the adrenals to be back to normal function - which means that they respond normally to stress. They continue to make cortisol when it is required according to the incredibly complicated feedback system in the body called the HPA axis (hypothalamus, pituitary and adrenals) which involves a whole range of different hormones, some of which do things and others of which stimulate things to be produced. However - if you have an accident, an infection, other forms of stress, you normally produce more adrenaline in the \"fight or flight\" response. It is this aspect that is impaired and which puts you at risk during and after longterm steroid therapy.

Long term means more than about 3 months or so, so once you have been on steroids for that long you need to be vigilant when under stress - it's generally no longer felt there is a need to give a \"booster dose\" of pred to cover minor procedures as used to be the case but a close eye kept on you to make sure you don't go into an adrenal crisis which is unpleasant and - if untreated - could be life-threatening. Different doctors - needless to say - have different views there! That was what I meant when I said the doctor had rather missed the boat on preventing the adrenals becoming dependent on the steroids - they never become \"dependent\" in the sense of addiction, but after a couple of months the taper needs to be slow and steady and it could be up to a year until they are working properly. Short term steroids can be given in quite high doses for a couple of weeks followed by a rapid taper of 10mg/day each week. Once you are down to a dose of 7 to 10mg a day this is about the same as you make naturally and the adrenals start to make what is needed to keep the blood level where it should be.

I'm not entirely sure about how the alternate day dosing actually works in this context. However, I take a bolus of pred in the moring, the blood level rises over the next few hours and then falls again as the pred is excreted - it's relatively quick. There has been an antiinflammatory effect which keeps going longer than the pred is in the body. So for the next 36 hours and more, I have no pred suppressing the production of cortisol by my adrenal glands and they have to make it themselves. They produce the most early in the morning - so they have made a supply just before I take the pred at breakfast time and wouldn't normally be making any then anyway. The next morning they have to work properly as well - so technically are producing cortisol every morning as per normal. For example, yesterday I felt quite sore and stiff in the afternoon and evening yesterday (not surprising after the tumble on Wed) but wasn't any worse than usual this morning - which is the effect I am putting down to the adrenals now working fairly normally.

Don't know if this makes sense, but it isn't depressing that your adrenals are still learning to run for some time, they've been walking pretty slowly while you are on steroids, and for normal purposes they are fine - just in emergencies they might not be quite up to snuff!

EileenH