Reducing steroids

[valrene]

Could any one help me please, I am reducing steroids on the 1st of March dropped by half mg to 4mg, have been fine until the 15 day when all my arms, bottom, wrists, knees and shoulders are giving me some pain again, have been fine since last October when I started on Leflunomide and 5mg of steroids, when reducing can it take 15 days when reducing steroids for pain to appear, thought it would happen before then. Val x

[DorsetLady PMRGCAuk volunteer]

Hi Valerie,

Can't answer that from personal experience, but would think that yes it possible for it to take that long for things to flare. Usual sort of timescale is between 5-10 days, but presumably can be shorter or longer - depends on the individual!

If when you were on 4.5mg you were okay, that might have been only just enough - if so, even the slight decrease could upset things.

As a matter of interest, when you reduced did you try a slow taper that took a number of weeks to get from 5mg to 4.5mg or did you drop it from one day to the next. If the latter, you should find it easier doing a slow taper, that way the body doesn't seem to notice the change.

Why don't you try increasing back up to previous dose and see if that helps. If so, you've probably got your answer, stay there for a week or so, then when you reduce again, go slowly.

One thing to remember, as you go lower the normal aches and pains of life do return, but if you think they are PMR related then try upping your dose just a little - no point in trying to be noble and suffering for it!

[valrene in reply to DorsetLady]

Hi Dorsetlady, thank you for your reply, last October Rheumy wanted me to reduce 1mg a month which I started on 1st November went from 5mg to 4, I did stick it out for 2weeks but the pain was quite bad so went up to 4.5 which was better, on 1Dec went down to 4 again pain came back within a few days did stick it out to give it a chance for 2weeks but with being busy for Christmas went back up to 4.5 again stayed on that until end of January with only slight pain I could cope with, 1Feb went down to 4 mg seem to be doing ok but I caught a virus or something had to stay in bed with a dizzy head and feeling nauseous all the time for 4 days couldn't eat, after 4days went to see Gp as I was getting worried by then as I was in pain all over, my Gp put me back to 5mg a few days later felt better, started reducing again to 4.5 then to 4 mg a fortnight ago did feel fine but now can't sleep again as my knees,ankles,hips,thighs and shoulders are killing me, have to phone Rheumy nurse this week to let her know how I'm getting on, but think I need to stay at 4.5 for awhile, she did say about doing 4.5mgone day 4.5 next day then 4mg the third day carry on like that for the whole month, thank you for your help. Val x

[DorsetLady PMRGCAuk volunteer in reply to valrene]

Hi,

You've had a few things to put up with which obviously hasn't helped your reduction.

Some more enlightened doctors now seem to realise that during winter it's more difficult to reduce - weather, colds, viruses etc so actually recommend that patients don't attempt it for those few months. Sensible really if you think about it, most people find cold weather more difficult to cope with.

As you say, good idea to stay at 4.5mg until you feel better, and then as nurse suggests try a slower plan. Most people find doing it more slowly (whichever way you do it) is more successful. Even 0.5mg does make a difference, despite what some doctors think, especially as you get lower.

Good luck,

[valrene in reply to DorsetLady]

Thank you DorsetLady had this cold for a couple of weeks family have shaken theirs off but I'm still coughing well, and just ache all over think I will go back to 4.5 for the rest of the month then perhaps try again when I feel better, thank you for helping me put all my faith in Rheumys but they don't suffer the aches and pains, I confident that I will get there in the end. Val x

[tangocharlie in reply to DorsetLady]

That's so interesting about winter and makes sense, why did nobody tell me that?!! BTW I was in a rheumatology clinic this week and got talking to a lady sitting next to me who has just been diagnosed with PMR but the rheumy wants her off the steroids in 6 months! She was in so much pain. I said to query it as my understanding is you need at least a couple of years on steroids. Why is there so much inconsistency and misinformation amongst the very people who are supposedly experts and there to help us?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Hi,

Why don’t they tell us, because I think they don’t think about it, or probably don’t know. I think this info came from one of the “good” ones!

As for wanting a patient off in 6 months, well all I can say is, even though he’s a Rheumy, he obviously doesn’t have much of an idea about PMR.

As we know, but obviously some doctors don’t, PMR is not a short term illness like many others, and I’m sure some also think the Pred cures it. It doesn’t, all it does is control the inflammation caused by it. Not quite the same thing. So, as that particular form inflammation is being produced all the time you have PMR, you need a certain level of Pred to control it.

Early days you need high doses of Pred to “mop up” the built-up Inflammation (before you were diagnosed); after that you reduce the drugs to find the level you actually need on a day by day basis. As your PMR wanes, then the level of drugs you need reduce, until the PMR goes into remission, and you don’t need it at all. But unfortunately no one can say exactly how long that will be. Some experts are now realising and admitting that could be 4 years or so, whereas they used to say 2 years.

[PMRpro Ambassador in reply to tangocharlie]

She needs a new doctor - and pronto. PMR does not go away in 6 months - if it does, it wasn't PMR.

medpagetoday.com/rheumatolo...

Recent research has shown its median (average) duration is 5.9 YEARS. Not months. And the author of this study is a top PMR expert at the Mayo - so I trust that rheumy wouldn't argue with him!

[tangocharlie in reply to PMRpro]

Please can you write to rheumatologists at Leeds (and other places probably) and tell them about PMR. So many people must be suffering from bad advice, I'm one of the lucky ones who queried things and found this forum and PMRGCAUK and I dread to think of how many people are suffering due to being given wrong advice and treatment.

[PMRpro Ambassador in reply to tangocharlie]

Some of the top rheumies at Leeds are well aware - but what a given doctor says in clinic is another matter. I know there is at least one dodgy one there.

They won't listen to me - I am a mere patient...

[tangocharlie in reply to PMRpro]

I feel quite angry about my experience at Leeds but unsure what to do next as I am still under their care. I do worry though that people aren't getting the right care and feel I should say or do something. I complained about one particular doctor years ago and was told I was not the first. I also wrote to PALS last year when I was supposed to see Dr Mackie in 3 months and it was by then 6 months and no sign of an appointment, and in the end it was a 9 month wait. That's a long time when you're ill, I kept saying I need to get sorted out and get back to work! They grovelled and said they were working on things and recruiting. Am now under Dr Dass's team and am now being treated much better now it is confirmed I do have PMR after all and probably Sjogrens too. I feel I've been banging my head against a brick wall for 3 years.

[PMRpro Ambassador in reply to tangocharlie]

There is a worldwide shortage of rheumies - it is even worse in the US I gather. There is a worldwide shortage of doctors to be honest. And it won't change any time soon. Next year in the UK could be awful. My 16 year old grandson wants to do medicine - but he's not going to be of any use for another 8 years even as a house officer!!! No idea why he wants to do medicine - I'd rather he went to be a plumber or electrician!!!

[tangocharlie in reply to PMRpro]

My best mate is a GP and she said there are something like 66,000 GPs in Britain of whom nearly a third will be retiring in the next 5 years. All practices are struggling to recruit. I keep thinking I should go into Brexile before it's too late but don't have the energy!

[PMRpro Ambassador in reply to tangocharlie]

Only a third? It's worth the effort - promise!!!!!

[PMRpro Ambassador in reply to valrene]

I think your body is shouting at you that 5mg is the dose you need to manage your PMR symptoms. It doesn't matter what you do if that is the case, the symptoms will return if you try to reduce the dose too far.

[valrene in reply to PMRpro]

Thank you PMRpro Rheumy did say last year he was quite happy for me to stay on 5mg but after Christmas wanted me to drop 1mg a month I knew from reading on here that 5mg to 4mg was too big a drop, think I will go back up to 4.5 mg to start with if that doesn't help will go back up to 5mg can't seem to shake this cold off I suppose our body's can't cope with infections so easy, I'm on 10mg of Leflunomide for a few months and hadn't had any pain at all in my knees,legs,ankles and feet but I'm struggling to walk again now, thank you for your advice thought that this reducing was a piece of cake I'm not one to give in just walk through all the pain but this is getting me down now, hopefully upping the dose will do the trick. Val x

[PMRpro Ambassador in reply to valrene]

Most rheumies think it is a piece of cake too - reality shows it isn't!

But if you have a cold - NEVER try to reduce. Wait until it is gone.

[valrene in reply to PMRpro]

Thank you PMRpro first time I have had a cold while reducing going to go up 1mg to 5 this morning as I'm shuffling along when I got out of bed, will remember that. Val x

[PMRpro Ambassador]

Yes it can. If the dose you were on was enough and the new dose is only slightly too low plus level of inflammation in your body was low it can take some days for the dripping tap of inflammation to mount up enough to cause symptoms you notice.

[valrene in reply to PMRpro]

Thank you PMRpro, think I might try the method my Rheumy nurse told me, 4.5mg first day 4.5 mg second day then 4 mg the third day try that for the whole month and see if it does fool my body, it's all sent to try us thank you once again. Val x

[Orchid47]

Hi Valerie

Are you still taking 10mg of Arava? You had problem with your liver?

Dir you taper down from 6 to 5mg or first to 5.5mg.?

I am courtently at 6mg using the DS method.

Thank you for your answer

Xxx

Orchid47

[valrene in reply to Orchid47]

Hi Orchid47, yes I'm still on 10mg Leflunomide no problems on it now, my liver enzymes have settled down, did read liver enzymes should be between 5 to 40 mine are 27 so Rheumy said that is fine, it's just that I had a ultra sound Gp thought I might have gall stones but nothing wrong with my gall bladder but I have a non alcoholic fatty liver,did ask Rheumy if I should stay on Leflunomide but he said it's fine, I'm not so sure steroids can give you a fatty liver as well, they reckon it's all the weight I have put on since taking steroids, I did go from 6mg to 5mg in one go but I was in a lot of pain so went to see Rheumy and said I couldn't cope with the pain at 5mg so that's when he put me on Leflunomide which did the trick, but since then have tried to go down from 5mg of pred but without much sucsses, I'm going to try the really slow approach next time, hope you have some sucsses but I would go to 5.5 mg first like the others say it seems a dodgy time getting this low a dose, my Rheumy nurse said to take 6mg for two days the third day take 5mg then back to 6mg for two days then the third day take 5mg carry on like that for the whole month, it is supposed to fool the body I haven't tried it yet give it ago and let me Know if it works I'm going to try it. Val x

[Orchid47]

Thank you Valerie

I have used the dead slow almost stop method starting with 5 days old 1 da y new from 10 to 9.

The first week I felt lousy the slowly the body got used to it, having had 5 released in the past, I am very scared to reduces Pred isone.

I wish you good luck and bitter health

X Orchid47

[valrene in reply to Orchid47]

Hi Orchid47, PMRpro said it's best not to reduce if you have a cold so I took an extra 1mg last night not quite so stiff this morning, instead of 4mg this morning I took 5mg my arms and shoulders are quite stiff but my knees,ankles and feet do feel a lot better this morning, going to wait until I feel better now before I start reducing again, it is scared to reduce but like you I do try to give it a fortnight for my body to get used to the lower dose, but like the others on here say we have to listen to our body's not always what Rheumys say, hope you have good luck reducing. Val x

[Orchid47]

Hi Valerie

Thanks for your reply.

I don t listen to my Rheumy, what does she knows about how I feel when I see her all 4 months!! They all reduce Pred too quickly anyway.

I don t really know if the Steriod reducing drug Arava works on me, but I feel fine and I shall continue to reduce Pred by the end of the month by 0.5 mg to 5.5mg with the DSLSM.

We need a lot of patience with this unpleasant illness.

Wishing you good luck with the tapering of Pred. too.

Orchid47

[valrene in reply to Orchid47]

Thank you Orchid47 I have upped my dose from 4to5mg on Monday evening I took an extra 1mg, the same yesterday morning I took 5mg instead of 4, today I'm back to normal I feel fine, so obviously 4 is just not enough at the moment, will wait a few more days then try to go down slower next time and see if that works, best of luck in your reduction. Val x

[PMRpro Ambassador in reply to valrene]

Remember that feeling rubbish because your adrenal glands aren't functioning yet won't be affected by the leflunomide - and that may well be the limiting factor now. One top PMR guy likes to keep patients at 5mg for months to let the body catch up - the dose is low enough to stimulate the adrenal gland set-up but high enough to keep you functioning and not at too much risk of an adrenal crisis under normal circumstances.

[valrene in reply to PMRpro]

Thank you PMRpro do you think that I ought to stay on 5mg for awhile yet, I did think that being on Leflunomide would of help keep the inflammation down, thought that's why my Rheumy put me on it, another question if you don't mind why do Rheumys put some people on methotrexate or Leflunomide with pmr but not every one have been thinking about this for awhile. Val x

[PMRpro Ambassador in reply to valrene]

The leflunomide may help the PMR - but it doesn't help withthe fact the adrenal glands have to wake up afte ryou being on higher doses of pred for so long. It is two totally different things.

Why doesn't everybody get put on mtx or lef? Because there is no real evidence it makes a significant difference but some rheumies think they do, others don't. Neither mtx or lef have any effect on their own in PMR. if they did they would use them not pred, but what they are thought to do is help the body get more out of a given dose of pred, so you can get the same effect out of a lower dose.

One study done about 8 years ago showed that giving patients mtx allowed them to manage on lower doses of pred - so some doctors latched on to that and use it. However, the same study followed the patients up for 6 years and found that there were no differences in the rates of pred side effects whether the patients had been on mtx or not. And nearly 1/3 of patients were still on pred after 6 years - again, no difference between the groups. The patients who had been on mtx had had fewer flares, that was the only long term difference. But those aren't the things doctor remember!

Leflunomide was used in a small pilot study with a total of 23 patients, 22 of them appeared to go into remission and get off pred quickly. But the study wasn't very long, not more than 2 years I don't think and no-one knows what happened later. Nor what the patients experienced and thought of it! The doctor who supervised the study was on the committee who compiled the last lot of guidelines for the management of PMR (2015) - but leflunomide didn't get a mention. mtx did, but the recommendation was it could be tried - in agreement with the patient. The committee overall felt there wasn't adequate evidence to recommend their use wholeheartedly.

[valrene in reply to PMRpro]

Thank you PMRpro Rheumy said when I get off of pred which he seemed to think would happen in a few months time I would have to stay on Leflunomide for another year to keep inflammation down, I had a scan for pain in upper right abdomen for gall stones but there wasn't any but I have a fatty liver, read up on Leflunomide it has a black mark against it for causing fatty liver and steroids, when I questioned him about it he said no they don't cause a fatty liver it's all the weight I have put on that's caused it and to go on a diet, I feel if I try and loose the weight but it's the tablets causing it I'm never going to get rid of it. Val x

[PMRpro Ambassador in reply to valrene]

Try cutting carbs drastically - it will be hard initially but it has worked for a lot of us on pred. If you lose weight and the fatty liver doesn't improve he'll have to find another argument!

Are you being monitored for liver problems? Leflunomide CAN cause liver problems so I think he is being slightly cavalier in blaming it all on your weight gain. I would discuss it with your GP, making it clear you are concerned.

[valrene in reply to PMRpro]

Hi PMRpro I have monthly liver blood test they are finally stable at 27 did read 5to40 is ok so they aren't too bad, do wonder if they are cheaper tablets that's why they give them to us before they try anything else, methotrexate really pushed my liver enzymes up so had to stop them, no carbs is that mainly your bread, potatoes,rice,pasta and some root veg, is lean protein and beans ok. Val x

[PMRpro Ambassador in reply to valrene]

There isn't anything cheaper than pred! And it is the ONLY thing guaranteed to work for PMR and GCA. But some medics are terrified of using pred and will try anything to get us off it.

Yes - that is the main thing, meat, poultry, eggs and cheese in moderation are ok. Keep an eye out for hidden sugar - it is in everything you buy whether you would think of using it when cooking for yourself! In fact - cooking from scratch makes a big difference. Good luck.

[valrene in reply to PMRpro]

PMRpro thank you for your help, I know I shouldn't but would love to prove Rheumy wrong. Val x