Relapse advice

Hi Lesley! Sorry to hear the latest drop was one too far.

If the 5mg improved things then that is a good start. The sort of general recommendation (even from doctors) is to take 5mg ABOVE the last dose you were fine at for about a week - so in your case, I'd suggest trying 10mg for a few days and then reduce back to 5mg. The boost dose doesn't mean you are starting from scratch and you should be able to reduce to the level you were OK at quite quickly. It's a shame you didn't go straight back to 5 as soon as you realised you were flaring - but no one ever wants to admit it - but it shouldn't be too late.

Remember you were reducing looking for the lowest dose that controlled the symptoms not necessarily to get off pred altogether - that's almost certainly 4mg in your case. Quite a few doctors like to keep their patients at 5mg for as much as 6 to 9 months before continuing the reduction and it seems to help the later reduction a lot. It is thought that maybe this allows the adrenal glands to "catch up" and begin producing cortisol themselves (the natural cortiosteroid we need to live and its about 7 or 8mg equivalent). Also reductions should be not more than 10% of the current dose, that's 1/2mg at 5mg which obviously you were doing but below that that percentage increases with each drop if you stay with 1/2mg. A common way of dealing with that is to take the new lower dose as 1 in 5 days, 1 in 4 days and so on until you get to all new.

I understand your reluctance to go back to 15mg and 10mg should really be enough - but let's face it, 15mg is better than PMR isn't it? And you should be able to reduce quite quickly back to 5mg if you hit the resurgence of inflammation hard and fast.

Eileen

Helo Lesley

This is exactly what happened to me at the 3mg point

After a reasonably successful journey down from 40mgs, I knew things were starting to go serfiously wrong again at around 5mgs but, knowing no better at the time, I had continued to followed my rheumy's advice in reducing by 1mg a month. At my next appointment with him he advised me to increase straight back up to 10mg for 2 weeks, then 7.5mgs for 2 weeks, then alternate days of 7.5 and 5mgs for 2 weeks, then 5mgs for 10 weeks which he later extended to nearly 7 months. I baulked at this and we agreed to a compromise and I stayed on the 5mgs for another 3 months. This worked a treat for me and I was then able to continue reducing successfully, albeit in only 0.5 decrements and tapering to each new dose gradually until I reached zero Pred. A snail's pace but it worked and I took comfort from knowing that at the 5mg dose and below there are unlikely to be any side effects.

So my advice following my experience would be to yourself straight back up to 10mg and the sooner you do this the more unlikely it is that you will need to go as high as 15. Lots of good luck wishes.

I too am seeking advice for a "relapse". I was diagnosed with PMR in January 2013 and started on 20 mg of prednisone. I slowly came down to 1/2 mg by November and went to zero November 25. I was good for a few days but then the aches slowly came back over the last 3 weeks and got bad enough that I restarted my Prednisone this week. I took 1 mg on Tuesday and the aches were better in the afternoon but returning in the evening and fully back overnight. So on Wednesday I took 1 1/2 mgs and was again better in the afternoon and remained better in the evening but overnight symptoms all returned. So this morning I took 2 mgs. If this doesn't resolve my symptoms better then tomorrow I was thinking perhaps I should go to 3 mgs.

I see above you are advising to pop up the dose by 5 mgs but I'm hoping you have heard that slowly upping the dose can work also, especially since I am feeling partial relief of symptoms?

I only recently found this forum and realize that I came off the last of my prednisone dosages way too quickly. As to my background, I was 63 when diagnosed.

Hi and welcome MrsCJ! Sorry you need to be here.

I'm afraid not - creeping up just takes longer. Creeping needs to be done going down! To be off pred starting at 20mg in 10 months is something I would say was a recipe for disaster. The pred didn't cure anything - it relieves the symptoms, acting as a form of painkiller. As long as the underlying autoimmune disease is active you will get symptoms if off pred.

If you are feeling partial relief already it does suggest that you will be lucky enough to be able to stabilise at under 5mg after this is sorted. Please get this in perspective - a dose of 5mg is very low, an amount of corticosteroid that is less than your body produces itself naturally to keep you alive. The side effects are minimal. Using "plus 5mg" in a flare ensures the redeveloping inflammation is hit on the head quickly and puts you back where you were in November. Then you can try a much slower reduction from there to find the lowest dose you manage well with..

Many doctors like to keep patients on 5mg for 6 months before continuing the reduction - possibly it allows your adrenal glands to catch up, it isn't sure but certainly going VERY slowly, especially below 5mg works better than continuing at even 1mg at a time. It may sound strange - but dropping overnight from 1/2mg to 0 is a massive percentage drop and we have come across several who found that difficult. You drop should be 10% of the current dose - that 1/2mg was 100%! You can smooth those drops by dropping the dose on one day in 5 for a time, then move to 1 day in 4, 1 day in 3 and so on. I can vouch for that working - it is the only way I can reduce and I have managed after much trying over 4 years to get to 6mg by doing that. I'm not the only one - and a gentleman called Ragnar developed a similar idea to get below 3mg (I can point you in the right direction for info if you like).

But remember, the aim is not - for the moment at least - to get off pred. It is to find the lowest dose that works. It'll probably be under 5mg for you - but at this stage you need to stay on each dose for more than a month to be sure it still is working. If you just keep on going down too often you miss that magic moment. 5mg isn't doing much damage in terms of side effects - less than taking NSIAD painkillers, believe me.

Just a quick update! Went up to 10mg and feel so much better in myself -made me realise how unwell I had been for the last couple of months. My fab GP rang me again Tuesday and we Agreed to remain at 10mg at least until mid Jan when she will ring me to discuss how I am and how we are going to manage the reduction again!.

I am struggling to understand what caused the flare ups and what I can do different, how much is related to having a very busy summer and some stress around work? My GP keeps telling me to rest and not do " too much". What is too much?

Hope all out there have a good Christmas and a happy and pain free new yeah

Hello again Lesley

Yes, that increase is absolutely in line with my experience when I, too, had a severe flare at the 3mg dose, like you. My reduction regime from the 10mg point is outlined in my reply to your earlier post.

The good news is that you say you feel so much better, so at least you have your quality of life back again.

Your GP is so right in advising you not to do"too much" - frustrating as it is, those of us who have been there and got the proverbial t-shirt learnt that we really have to more or less wrap ourselves in cotton wool for a while if we wish to shake off this painful disease. As for "what is too much", you have mentioned that you had a very busy summer - I think that has answered your question.

I do hope it's all plain sailing for you now and that you can enjoy a pain-free Christmas and New Year! Good luck, and do keep in touch.

MrsO

"I am struggling to understand what caused the flare ups and what I can do different, how much is related to having a very busy summer and some stress around work? My GP keeps telling me to rest and not do " too much". What is too much?"

Let's begin at the beginning: the flares were caused by going down to a pred dose that was too low for you at the moment - that and very little else. The expert opinion (and it is confirmed by almost everybody I have met through the forums) is that all flares are due to reducing too far or too fast. You are not looking to reduce steadily to zero - you are looking to reduce to the level that controls the PMR symptoms you have AT THE MOMENT.

Now, "at the moment" will vary with the patient and for any patient with the demands they have to fulfil. Those of us who are not having to get up and be at work at 9am and perform full-tilt until 5pm can probably get away with a lower dose - I worked but I'm a freelance translator, I had to stagger out of bed to the computer, and that not every day. I'd have never managed to get to work by public transport - not sure I could have got dressed first either! I could barely walk to the corner to the pub for lunch! But once I took 15mg pred I was fine. Relatively speaking. I was allowed to take it because I was off to the USA to a meeting - the consultant didn't believe I had PMR, he wanted it to be anything but and wouldn't even listen to my report that the symptoms were 75% gone in 6 hours. After 2 weeks I was to go down to 10mg, another 2 weeks and down to 5mg, then stop after another 2 weeks. Within 36 hours I retreated to bed in worse pain than ever. I'd been fine at 10mg, OK at 5mg. Ever since I have struggled at under 9mg - until this autumn.

But I live in a flat with a lift - I don't normally have to cope with stairs although I do for the exercise. I don't have to be anywhere for a specific time, don't have to do any heavy work, I do an absolute minimum of housework. Two days ago I walked into town to the Christmas market, wandered round and back home for over 2 hours. I walk for 3/4 hour every day - but I felt the 2 hour walk and have rested since. Lizzie on the other forum has turned into a "precious princess" - and since she did she has also reduced like me despite the fact both of us have struggled for the last 4 years.

You have to listen to your body - and keep notes to see what is "too much" if you can't work it out any other way. The fact you say you now realise how unwell you've felt for a couple of months says the too low dose wasn't your last dose. Many docs like to keep patients at 5mg for 6 months or more. Your body should produce about 7mg of steroid anyway - at that point your body needs to catch up and it may take a long time. It's felt the adrenals can take a year to get back to normal - so actually staying at 5mg for even a year is not unreasonable, especially if you are stressing about ANYTHING - family, work, selling a house and moving, even coping with a lot of travelling.

I know it feels unfair that some people "get off pred" in a couple of years - they are in the minority whatever the docs try to tell us. The medical literature suggests that only about a quarter manage that and they are at highest risk of a relapse - personally I'd rather be on 5mg for life than revisit the first few months of PMR! A good half need 4 to 6 years and a quarter need pred at a low dose for a long time, sometimes life. That could be associated with poor adrenal function, it isn't clear. And a relapse, a second batch of PMR, won't necessarily be the same as the first - the 2 ladies MrsO and I know who've had the pleasure say the 2nd lot was nothing like the first.

It's unlikely you'll need to start from scratch to reduce - but I'd only get down to 5mg before taking a good long rest there. The side-effects are minimal at that level, you need to be able to work. It doesn't mean you won't get off pred ever - it just means not yet.

Eileen

Many thanks for the reply - I am more than happy not to reduce for the sake of it, the very slow reduction was very much due to feeling ok however 5mg for a prolonged period is fine. The weight gain is a worry - mainly due I'm guessing to lack of meaningful exercise. I really do try to manage how much I do, home life is very sedate with early nights and healthy food. Have a husband retired on health grounds who makes sure home is well run without me having to do more than occasionally press the button on the dishwasher! I do work longish days, leave home 7.30 and back at 6ish with only a 20 min drive to the office, however rarely move far from my desk and if I do tend to use the lift to get to meetings. We have a number of nurses in the team who have an awareness of PMR, it is interesting how I feel they don't quite believe when I'm suffering as their experiences are people who are more 'disabled' by it and feel I have a 'mild' form of it. All interesting stuff - wouldn't wish a bad day in my body on anyone!

Hi Lesley M. I have read your message and Eileen's reply which is so helpful, I just thought it might give you some 'solidarity' back-up to k ow how my PM r has come back. My NHS rheumatologist is constantly trying to prove that I don't have, and have never had PMR! To lay this to rest, my GP did lots of tests in the summer including a MRI scan. This showed spinal stenosis and. I went on within a month to have a decompression of the trapped nerves.

This has certainly helped the sciatic pain in my legs and now after four months, I can say my back is nearly back to normal with walking etc. But- having decreased Pred and come off it a month ago, I have had an awful re-flaring of aching, throbbing shoulders and across the chest. My GP put me on 20 mg straight away and I am now on 15 intending to reduce very slowly as Eileen advises. I am ignoring the Rheumi who wants me to decrease by 5 mg a week! I am much better now and feel back in control again. I have never had any side effects from Pred ( usually staying at 7-5 mg).

I am glad you are also back in control and will be able to enjoy Christmas!

Best wishes Cosima

Weight gain CAN be controlled when on pred but you do have to be very strict. One lady did it with weightwatchers, I eat less than about 50g of carb a day (low carb diet) and both of us have lost about 30lbs are still on just over 5mg/day. It is possible! Avoiding carbs also helps with the craving for food that pred sometimes causes. If you can manage the stairs I'd suggest using them - it keeps the leg muscles fairly much in trim and pred doesn't help muscles much! And you should certainly get up and move every half hour or so - not much, just a short walk to unstiffen your muscles - it is allowed under employment law!

Funny how nurses can be so dismissive of other people's problems - come across that before! And Cosima - funny how rheumys can be hopeless about PMR. I think it must be because it is one of the least damaging rheumatisms and there is nothing to see on the surface!

By the way - I have to operate the dishwasher switch - OH can manage to empty it but not put it on!

Thank you so much for your advice.

I really wish I had known about this forum when I was first diagnosed with PMR as I did quite a few things wrong. When I was first diagnosed I asked my doctor how long I would need to take Prednisone and he said for PMR usually for only a few months. That got me totally off on the wrong foot. However he also gave me good advice about tapering....to try every other day or every 3rd or 4th day, etc., reduce by only 1/2 mg, and to listen to my body so that was OK except he didn't warn me to stay at each dose for awhile. Oh well......water under the bridge.

For the 11 months I was on Pred, I assumed it was better to live with some stiffness rather than take a higher dose of Pred. From my reading of this site it sounds like it is better to take a bit more Pred as inflammation is not good for our body (and I'm gluten/dairy sensitive so have had inflammation from foods which I hope is now minimized). When Eileen H responded to my initial posting about my relapse she suggested I go on 5 mg of Pred which I have done. This has pretty much 100% relieved my hip girdle/upper thigh aches. However I still have some aches across the back of my shoulders and base of neck though I have had some very good (90%?) relief there too.

So my question is, should I increase my Pred a bit more to see if can get even more relief in my shoulders/neck?

For example, should I try 5 1/2 mg Pred? Or alternate 5 and 5 1/2 mg? Or should I try 6 mg? Or maybe alternate 5 and 6 mgs? As Pred works quickly, would something like a 3-day trial be ok?

It may turn out that 5 mgs is my best dose for now, so how many days can I experiment at the higher doses so that I can get right back down to the 5 mgs without facing several weeks of tapering back down?

After reading this site I don't worry as much about being on the Pred, but I do get a couple of side effects from it (even at my current 5 mg dose) so for that reason I would like to be on the lowest dose that effectively controls my PMR stiffness.

I don't know if this helps but perhaps I should also mention that I felt the best when I was on 2 mgs.....no Pred side effects. Also the PMR was better - my muscles had a bit more strength and the awful fatigue let up quite a bit.

Happy new year everyone!

Where on earth did he get the idea that PMR is done and dusted in a few months? I despair sometimes!

Is the neck and shoulder pain definitely PMR? Could it be tense muscles causing it?

If I were in your position I think I might try 10mg for a couple of days and see if there was a definite difference. If there is, 10mg for a few days , 7.5mg for a few days and back to 5mg.

If not I'd go straight back to 5mg and be patient for a few more days or look for an osteopath/physio/Bowen practitioner who would do a bit of gentle work on your neck and shoulders. That was how I survived upright for 5 years of untreated PMR - that combo worked for me. You could ask your GP - but physio appts take forever on the NHS!

Remember - just because we have PMR doesn't mean we can't have other stiff necks. Oh yes - I find a scarf even in summer helps a lot. Drafts bite people with PMR!

Eileen

Hi Everyone,

I am 60 years old and have been on pred for almost 2 years along with methotrexate and plaquenil. My initial dosage of pred was 15 mg, since then and with a few setbacks have been able to get to 3.5 mg. About a little over a week ago I went to 3 mg at the request of my Rheumatologist . The pains in my knees, hips and shoulder have returned. Thanks to this forum and EileenH I have come to know that that was to drastic of a change. I never thought that as you get lower in pred the reduction rate is more critical. Another protocol was mentioned to get below 3 mg by Ragnar. If anyone can point me towards that information I would greatly appreciate. After reading these posts I went and took another mg (total 4 mg today) which I will stay on for a day or two then back to 3.5 for a while. I am so glad that I found this forum.

From across the pond,

jo-anne1

Hi Jo-anne!

This is the extract from Ragnar's story about how he reduced from 5mg:

"I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce below 5 mg during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so."

You can find it and read it for yourself by following the first link on this post on this forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

and clicking on "Our Stories" on the menu at the right side of the homepage then looking for Ragnar's story..

You don't have to take the same dose every day - so as he says you can take the new dose 1 day out of 3 for a short time and then go to new dose for 2 days out of 3 and finally to every day. I take even longer (more days old between the days of new dose) because I can only drop in whole mgs - I cannot cut the type of tablets I have as they have a special coating. The smaller difference between old and new dose the better.

Eileen

Eileen,

Thank you so much for your quick response. I will definitely put this regime to work. Fortunately I have the 1 mg tablets that are scored which makes them easy to cut in half ( not sure if I can quarter them, but will try).

Thanks again,

Jo-Anne