PMR

It is known that if you can take your pred at about 2am it reaches its maximum level in the blood at about the same time as the body also secretes the substances that cause the inflammation. It is perfectly logical that if the bucket of water is standing next to the fire you can douse it before it gets hold - and that is the same sort of effect: the inflammation doesn't even get a head start. Studies were done on hospital patients who were given their morning pred dose at various times through the night - 2am was found to be optimum and they designed a form of pred on that basis. Noone of course wants to set their alarm and take pills at 2am - most people sleep badly anyway!

I was on 20mg of Medrol and switched to the delayed release formulation of pred which is already commonly used for rheumatoid arthrtis. I take it at 10pm, before bed, it sits around in the gut for 4 hours and then releases suddenly as the coating disintegrates, getting to a maximum blood level at about 4am. I was able to reduce to 15mg practically from one day to the next and got a better result. I am back down to 9mg which is where I was 15 months ago and hadn't been able to more than think about since then. Trials are underway with this overnight form of pred for PMR - it is hoped that it will be possible to start on a lower dose (10mg) and achieve a similar result to 15mg ordinary pred. This will have the effect that the total pred dose will be much lower. Unfortunately it is very much more expensive - but it has been approved for use in rheumatoid arthritis which is what it was developed for.

What happens next? You will possibly feel a bit stiff tonight - but the fact you will have had such a good and mobile start to the day may keep you going well until you go to bed! Whatever - enjoy it but don't go mad with the cleaning or walking or you may suffer tomorrow! It's a common mistake - I feel so good I must be back to normal!!!! Personally the thought of pews and draughts as per usual English church sounds like a good reason for a stiff back

And, of course, you could hope that it wasn't PMR and a wrong choice of diagnosis was made to start with and whatever it was has really gone away. Fingers crossed

Eileen

Thanks for your informative reply Eileen, you were right, slight stiffness started around 10pm but after a brilliant day it was acceptable. I have a rheumatologist appointment this week and blood test so will discuss all alternatives then.

Again thanks for all info.

DJ

Quite - if you can banish the end-of-effective-stiffness relief to overnight and are able to take the pred at a point that leaves you mobile for the time you need it then it is a win-win situation.

I've probably already mentioned this but it's been a confused thread: A minority of people take their pred late at night before going to bed even when it is ordinary pred. This isn't recommended by most doctors as they feel it is associated with increased side-effects. I did it a few times when I was taking enteric coated pred and it worked well (I'll explain the reasoning in a minute). Others have been told by their rheumys to split their dose and take 2/3 in the morning, the rest later. It is quite an individual thing and some rheumys refuse to countenance the idea. Then there is the newish formulation with a very tough coating, timed to disintegrate after 4 hours aimed at reducing morning stiffness to a minimum and already used in rheumatoid arthritis.

When you take ordinary, non-coated pred (the white tablets) it is absorbed from the stomach and the blood level peaks about one and a half to 2 hours later. So if you don't take it until 6am (the earliest most people manage) there isn't a lot in the blood before 8am. As I explained before, put simplistically, it is thought that the stiffness is due to the cytokines the body releases about 4am - so it is already up and running before the troops arrive in the form of pred. If the pred was already on patrol - to a great extent the stiffness would be prevented before it developed. The newer formulation is designed to do this without you having to wake up in the middle of the night to take it but is very expensive - even though it is likely you would need a lower dose as well.

Somewhere in the middle is the enteric coated version of pred, the red and brown pills at 2.5mg and 5mg. These are not absorbed as quickly as the white tablets as they are designed to pass through the stomach without the acid there breaking down the coating and are absorbed further down the gut, so it takes longer to get there. However, in some people the time taken is very variable - in some people the peak is achieved after about 4 or 5 hours, in others it may be 8 hours or even longer.

Do discuss it with your consultant - if you are lucky enough to see him! The first time I saw the consultant who decided I could try pred for 6 weeks and see what happened. The second time I went to the hospital I walked in to be greeted by a complete stranger who then went through exactly the same process as I had already had the first time. He was not interested in my experiences with pred (almost 90% relief in 6 hours) and finally fetched the consultant because he had no idea - and he wasn't interested in the typical-of-PMR response either. He was determined it was something else altogether. The other chap was a GP with a special interest in rheumatology - thank you, but I had one of those in my own GP practice. I've never gone back to the consultant.

And do remember, whatever the blood tests may suggest, there are repeated references in the medical literature that the ESR and CRP are unreliable measures of disease course and these references have been on the increase recently. They may be "normal" but the disease is still active - your symptoms should be looked at first.

Good luck,

Eileen

So lucky to have private medical insurance so see same chap.

Your info was of huge interest, I shall go to app. tomorrow armed with questions re tablets.

Thank you

DJ

Just to keep you updated incase of interest. My rheumatologist happy to prescribe the red and brown pred slow release. He explained the GPs used to prescribe more frequently until the health trusts compared costs and pushed the cheaper option. I will tell you what I must pay after buying 4weeks supply of tablets, incase of

He wants me to stay on 15mg and not to drop to 10mg too quickly thinking all well. He says this happens all too often. He also said I must not try and cut in half as doesn't work. So I will be patient and go slow.

I never would have known about the option of slow release without this discussion forum so am grateful.

I will take first lot tonight and see what happens.

My body is very stiff and painful this morning so must move around and take more exercise. Too much standing and cooking yesterday!

As the Dr, said sleep is not a sanctuary it's the cause.

A very happy pain free Christmas to you all.

DJ

The red and brown enteric coated tablets aren't the same as the delayed release Lodotril ones - I hope you didn't get confused by what I said but it will be interesting to see how you get on with this way.

The enteric coated ones were prescribed a lot to help avoid the stomach problems that lots of people experience because of the fact they are absorbed far lower down the gut. Then, in looking to save pennies, the NHS took the studies that said there was no difference so it was then recommended that the ordinary tablets plus omeprazole would achieve the same at a lower cost. The GPs said fine by us - so loads of patients were switched to ordinary pred and then the proverbial hit the fan! Patient after patient returned to their doctors complaining of sore stomachs after changing to the white tablets. And the GPs found that there WAS a difference. To add to the farce, the drug companies increased the price of the ordinary white tablets to nearly the same as enteric coated - and there was the price advantage pretty much down the drain, lots of patients being put onto yet another drug (omeprazole, which isn't needed with the enteric coated stuff) which has plenty of side-effects of its own! However, GPs can still prescribe them if a patient needs them, they just have to make sure they stipulate enteric coated.

You must not cut the enteric coated pills - because the coating is to prevent the tablets dissolving in the stomach. If you cut them open that advantage is lost. You have 5 and 2.5 pills so can do 15 and 12.5 really esily. if, when you get to the stage of reducing you wanted to try a smaller step it also works if you take 15 one day and 12.5 the next for a week or so before dropping to 12.5 every day - then you have reduced by the equivalent of 1.25mg/day in between.

You rheumatologist sounds pretty clued up about going slowly - how long does he want you to stay on 15mg? And sleep - well, it IS a sanctuary and you need plenty of it when you have an autoimmune disease, it allows the immune system to regenerate a bit but the trick is more to try and have an afternoon rest which should allow you to cope well with a evening without feeling you are dying by 7pm! Lots of people find they are less stiff on the mornings when they had to get up to go to the loo a time or too or if they slept restlessly. For those who sleep like the proverbial log it is a cause of the stiffness because regular movement helps avoid the myogelosis (posh word for stiff muscles) and it is the same in the daytime too - consciously taking the time to move away from something that requires sitting or standing still and stretching will help. And of course - on the really good days don't go mad, because then your muscles will remind you the next day or the day after!

Happy Christmas!

Eileen

DJ

Eileen has explained the differences between the various pills. There is a big difference between "slow release" and "delayed release", the latter being taken at around 10 pm and released into the body about 4 hours later. The delayed release is still really being trialled, with patients generally receiving a lower starting dose of 10mg but continuing on that dose for about a year.

I took the red and brown enteric coated ones down through the higher doses until I needed to reduce more slowly in smaller amounts and then I added in some white non-coated pills. I didn't take any of the stomach protectors such as Omeprazole or Lansoprazole because they both caused problems but relied on the enteric coating, plus a live yoghurt before taking the tablets, to do their job of protecting my stomach. Whereas the enteric coated pills shouldn't be cut, you can cut the white pills to make up the very small dose needed at the final stages.

You don't say how long your rheumy has suggested staying on 15mgs although you do mention that he has said not to reduce to 10mgs too quickly. I take it that you won't drop to 10 in one go but will go via a 2.5 drop at the most to 12.5? Another tip is never to reduce during a busy week in your life but during a quiet week or so whilst the body adapts to the new dose.

I do hope you will feel an improvement in time to enjoy the Christmas festivities - Merry Christmas!

Thanks for your replies and explaining again about the tablets. My rheumy told me there was a tablet being trialed mainly for rheumatoid arthritis sufferers.

Because I said I had had such a great response from taking my dosage at 1am thinking it was 7pm he thought it well worth a try.

I see all the tablets are 5mgs which I had not taken on board till I read your replies about a 2.5mg. Just going back to pharmacist who says he will Swop one box to 2.5mg although its £8 extra totalling £29 for 4 weeks worth! Mmmmm now I can see the logic in all of this and in time if they work will make my GP supply.

I think my rheumy wanted me to stick for a good 3 weeks to 15mg which I will do.

I have an appointment in 4weeks time.

I wonder why he didn't prescribe 2.5mg, as dropping to 12.5 as you all suggest seems so sensible.

Thank you all for your help and information, I tend to leap in and get muddled so am so grateful for your time.

Christmas Blessings

DJ

Great! Well, not the price! Doesn't that get covered by the private medical insurance? I'm fairly sure though that a letter from the rheumy should induce your GP to provide a prescription!

I suspect your rheumy isn't quite up to speed on Lodotra - I understand it is already approved and launched for RA in the UK ("Launched in the UK on 1st October for the treatment of moderate to severe active rheumatoid arthritis in adults, particularly when accompanied by morning stiffness. Available as 1mg, 2mg and 5mg modified-release tablets which are taken at bedtime with food [2].

27/09/2010") It has been approved in the US for polymyalgia rheumatica since July 2012.

and it is undergoing trials in the UK for PMR at present .

However, if you think enteric coated pred is expensive: Lodotra costs about 27 euros for 30 tablets, no matter whether it is 1,2 or 5 mg! So 15mg costs 80 euros or over £60. In fairness, your enteric coated wouldn't be costing the NHS the same as they get preferential bulk-buy discounts. You are paying full wack as a private patient.

And don't worry about getting muddled - we've all been there and we have had a few years practice compared with you!

Happy Christmas!

Eileen

Hello

I see my rheumy privately on insurance but prescribing is done via the nhs gp this is apparently normal practice

The rheumy writes to the gp with changes in medication but as this can take a week or two to get through the gp and I have an arrangement where I have an appt after seeing the rheumy and report changes verbally

Save your money for christmas!

Have a good one

Thanks Angiebabe - I thought that was so but never having had any personal experience I didn't want to open my mouth and put my foot in it!!! I do that enough.

A lot of rheumys will also transfer you to their NHS list if you need scans, ops and so on that can't be referredfor/prescribed by your GP, especially if you don't have insurance but have chosen to pay yourself to get a consultant appointment more quickly.

Eileen

Moderators: why when I come here via my email notification and then sign in am I now transferred to the top of the thread so I have to click again to get to the post at the end that I want to reply to? I know it sounds petty, it's only a click and a scroll down a long page, but the site is even slower than it was last spring. You aren't encouraging us you know ;-) Plus - how do you get back to the top of the forum now? I know I'm dense - but REALLY!

fed up with this site when i try to press on polymyalgia and gca the marker wont go on it ,and now you are making more changes plus i agree with eilleen i have to scroll down miles to get to comment .carol k

Hello to anyone around!

Since I last wrote I started on 15mg enteric coated pred taking at 11pm. For first 3 days everything was brilliant and I lasted for 24 hours.

Not quite so pain and stiff free these last few days. Tingling arm tops and calf muscles on waking which goes then around 6ish start feeling muscles unhappy. Still mobile though so shouldn't complain but not how I felt initially.

Rich food and alcohol I suppose have a negative effect and over Christmas hard to stay on sardines!

I,m rather disappointed as thought I may have stabilised taking at night.

I shall make GP appointment re getting tablets on NHS and may even switch to being monitored by GP rather than private rheumy as have realised with the help of this site rheumy making money too easily!

Thanks for explaining about Lodotra and delayed release, now understand difference.

Do you think I should try 10mg pm and 5mg on waking? Or should I wait to see GP.

Also rheumy did not mention another blood test in 4 weeks when I next see him, how often does one need blood tests?

Also when should one carry a blue card, my rheumy said I didn't need to?

Thanks for reading, if you have, and agree re this site being quite difficult to navigate so hope this pops up in the right thread!!

DJ

Hello again DJ

It isn't unusual to find that the steroids work as if by magic during the first few days, then to find that pain and stiffness is still lurking around. Plus, perhaps, like many of us, you have been overdoing things during the run-up to Christmas and getting overtired rather than pacing yourself - difficult to do but very necessary whilst suffering from PMR. The steroids are not curing PMR but are just damping down the inflammation that causes the symptoms, so most of us find it necessary to adjust our lives a little to allow our bodies the best chance to recover. That said, there have been some people posting on the forum who have needed a higher starting dose of 20mgs to control the inflammation.

I haven't got any experience of taking the steroids at night as I was told the best time to take them was in the early morning and certainly this is how the majority of people take them. However, a few people say that splitting their dose has helped. It is a case of finding what works best for you.

As for blood tests, if you had raised markers at the outset they should be repeated after the first few weeks and before any reduction, and together with your symptoms can be a very useful guide as to whether to reduce or not.

It is very advisable to carry a blue steroid card in case a situation should arise in the future where you require medical treatment so that any medics can see you are a patient on steroids and can treat you accordingly. The cards are available at either your GP surgery or local pharmacy. The cards are also useful for you as a record, although many of us also keep separate up-to-date notes of things like blood test results, doses, dates, etc that we can take to our rheumy or GP appointments as a memory jogger!

I hope you will be lucky and find that your GP is one of those who is up-to-date with PMR but, meanwhile, you may find it helpful to download a copy of the BSR Guidelines for the Management of PMR.

Do hope that helps.

MrsO has said it all - I bet you have been overdoing it because you felt so much better! You need to help a bit by resting too and avoiding stress. It will take a little while to achieve the maximum from the dose you are on - there is a load of inflammation there and although you feel loads better very quickly it should continue to improve for a while. As long as you do your bit too!

As for not needing a steroid card - it may be a new idea but apart from any other consideration: what would happen if you had an accident and were knocked out so couldn't tell the emergency services you need a dose of steroids and how much and when? Or had what is called a TGA (transient global amnesia), something that happened to me, admittedly before being on steroids? I could remember nothing earlier than 5 minutes ago for a period of hours! My OH wouldn't have a clue what dose of what I need.

And before seeing your GP, download the stuff from the northeast support site - there is a link in a post at the top of the list of threads on PMR or google pmr gca northeast support group and follow the link on the left side of the home page. If you have info from the British Society of Rheumatologists they may feel more confident.

Eileen