relapse or withdrawal?

[Stkeyna]

Being an old hand at tapering, and not always successfully, I was just wondering how you know the difference between withdrawal symptoms (I'll grit my teeth and carry on) and a relapse (quick where's the extra prednisolone)?

[DorsetLady PMRGCAuk volunteer]

Hi,

Personally my withdrawal symptoms (early days before I started a slow taper) came on virtually the day of decrease and lasted a couple of days - and I just felt under the weather, a bit grotty, and a bit short tempered. You can take paracetamol to help you though.

A flare on the other hand can take anything between a few days to a couple of weeks to mainifest and then you usually get a return of the symptoms you had pre diagnosis - maybe not as strong, but similar.

Hope that helps,

[markbenjamin57]

Greetings Stkeyna

Yes, the 64 (thousand?!) dollar question and dilemma, and I'm sure you'll get plenty of replies to this one!

For what it's worth, this is a very un-predictable equation. On the one hand, we (and often our medics also) want to hasten the process of tapering for all sorts of reasons. On the other hand, and as The Aunties here say, 'Symptoms Rule', and it is very difficult to distinguish between what are called 'withdrawal symptoms' and / or a 'relapse' since they seem to be very similar.

My conclusion from experience is that we need to take into account the context in which we taper the steroids as much as anything. In other words, when and how (and the risk of any possible kick-back from such in terms of withdrawal symptoms) depends on our circumstances and personal health context.

Sorry if this sounds a bit vague, but making sense of the tapering / steroids withdrawal symptoms equation seems to be an on-going topic here!

The main things is, try to keep smiling in between times and the confusion - it can help a lot

MB

[SheffieldJane]

This is debated on here quite often because it is really difficult to judge sometimes. The onset of my PMR involved terrible groin pain that made it difficult to walk. I know I am in trouble if I get pain in that area. I do get fleeting pains across the shoulders and in my arms during a taper but these pains don't seem to herald a flare. I could be wrong, it's like fine tuning an instrument. Especially in the winter when arthritic pains rock up and muddy the water. Blood tests won't necessarily show a flare either. It's a tough call.

[HeronNS]

I've recently had personal experience of the difference, believe me, I knew the difference. Previous tapers sometimes had to be tried more than once before successful, but I always ended up as well as or better than at the beginning of the taper. This time, even after giving up the taper and returning to the old dose, pain just continued to increase. Slightly increasing the dose, which I'd done a couple of times before for a single day, usually after a bit of extra stress, didn't help. The morning it hurt to get out of bed I knew for sure this was a dreaded flare. I added 5 mg to my last confirmed good dose (recommended protocol) and have since then been doing well. Approaching new taper with trepidation but will attempt soon and hope it is as easy to get back down, at least part way, as others have said it is.

[jinasc]

Steroid Withdrawal and the difficulty.

Before we had the two slow reduction plans, we used to say, decide which day you are going to make a reduction and plan for the following days to do as little as possible.

If the increase continued for 4 or five days, then go back to where you were and wait for a few weeks before you tried again.

The body gets used to what it is taking and does not want to let it go, think of drug users trying to get clean. The reduction plans, sort of give the body what it wants and because it is slow, it allows it the think it is not happening.

OK I know that sound odd, but I cannot think of a simpler explanation.

[Sandy1947 in reply to jinasc]

This is helpful. I started at 25 mg in June and now I’m decreasing by 1/2 mg. I’ve been alternating between 14 and 14 1/2 for a week. I feel OK but have some neck pains when I wake up and pains behind my legs later in the afternoon. I split my dose. I think I should continue this for another week before trying 14. Do you agree? Once I hit 14 how long should I stay before I decrease?

[Stkeyna in reply to Sandy1947]

Hi Sandy, The guideline generally is drop by 0.5 mgs every two weeks so 1 mg a month. Obviously depends on how things are with aches, pains, headaches etc. I have certainly zipped down quicker in my early days which has worked sometimes and not on others. The fact I have had the illness for ten years probably says much for my early approach! Good luck!!

[Sandy1947 in reply to Stkeyna]

Thanks. This taper is a bit worse than before so the anxiety sets in. I’ll simply stay longer and remind myself PMR has it’s own timetable.

[Stkeyna in reply to Sandy1947]

Yes anxiety - a problem in itself. I just listen to those I respect, try and listen to my body and just keep busy keeping those 'whatifs' at bay! However don't cut corners with prednisolone as you will end up taking more than is necessary. Then you could find the enemy is just as much the predisolone as the illness itself! Keep smiling which I am sure you do!

[Sandy1947 in reply to Stkeyna]

Thanks for the good advice. When pain in my neck starts it brings back memories of I initial diagnosis.

[barbthy in reply to Sandy1947]

I am following the slow reduction plan and am on week 3 of reducing from 12 to 11. I usually split my dose and decided to try to take total dose in morning. It didn't work for me, I was stiff, back of legs and lots of shoulder pain. Tried to tough it out for 3 days and then went back to split dose. Wonderful relief, took 2-3 days of split dose and minimal morning stiffness and some shoulder/arm pain.

[Stkeyna]

Hi Everyone, Thanks to you all for the response to my question about relapse or withdrawal!

I asked as I seem to have reached a little crossroads, after ten years, on prednisolone and wondered why I have struggled so much lately to get down from 15mgs. Wondering perhaps was that a withdrawal phase or flare? I was stuck on 15mgs for 5 months from May to September.

I discussed this recently with my highly regarded rheumy who looked at my four efforts with steroid-sparing drugs and my rising problems with side effects from prednisolone: back rash, breathlessness, stomach pains and bloating etc. He suggested I bite the bullet and try to get down to below 10mgs as soon as I could. He did remind me that it should be at a slow pace (0.5mgs every two weeks) but to try and grit my teeth and push through the headaches, feeling ill etc. From his 30 years plus experience he felt I couldn't really do any harm while still above 10mgs. I am now down to 13mgs and surviving but still having prednisolone side effect problems!

Anyway thanks to everyone for their contributions!

[Ronnie101 in reply to Stkeyna]

That's very interesting - my rheumy and gp have both said keep on trying to reduce the steroids despite the pain, and not to increase. Since the GCA symptoms stopped I've developed PMR like symptoms - so much so I couldn't get out of the bath last night! I'm so tempted to increase the pred (from current 11 mg) but both have said don't!

As for pred side effects, I've developed steroid induced cataracts, which all the professionals say will get worse if I increase - ironically there is an incentive to increase the steroids, as I'm not at the stage where I can get cataract surgery yet!

[Stkeyna in reply to Ronnie101]

Difficult one! I would listen to your body and if it gets too bad you may have to go back up. I'm lying down at the moment trying to deal with a bad headache and going to try and hang in there! Good luck!!

[Ronnie101 in reply to Stkeyna]

You too! I'm not sure I'll get up again if I lie down!

[PMRpro Ambassador]

Withdrawal tends to be immediate and then improves over about a week or so. Flares start a bit later and steadily worsen. The idea of the slow tapers with small steps is to minimise the withdrawal aspect.

However - I do love (NOT) the cavalier attitude of some doctors who seem totally unable to accept that patients are different and that, since some patients only absorb 50% of the dose they are taking while others get up to 90% that this has a major impact on the amount of pred they require. My 15mg may in reality be about 13mg, whilst yours may only be 7.5mg - so why should be be both forced to get to 10mg?

[Stkeyna in reply to PMRpro]

Thanks! So difficult as we are all so different and react so. As you say we may not have been absorbing as much prednisolone as we fear and as I haven't put on much weight, I would suggest I don't absorb as much of the steroids as others? However what I know is after ten years the side effects are really 'kicking' in - certainly the correct verb - and I need to reduce the steroids are they are becoming as damaging as the illness or seem part of it! I do wonder though if I have misread withdrawals for relapses as you mention weeks? However my problems are always headache lead which hasn't varied but I have been repeatedly told not to wait - if feeling unwell just take the steroids!!

Any thoughts on tocilizumab? The 2016 studies seemed to be favourable??

Anyway do hope you are well. I think you said you had been stuck on 15mgs and had struggled to get down? So hoping you are well past that stage.

[PMRpro Ambassador in reply to Stkeyna]

No - I had to return to 15mg nearly 2 years ago and it took a few months to get lower but I am now at 7mg, 5mg was a step too far.

What side effects are you now experiencing? Most can be managed when you know how. I gained weight and lost it again by hard work and very low carbs - 35lbs. I could do with losing a bit more - but that is nothing new for me!. I gained weight with PMR - the immobility and inability to exercise properly did that! I have no pred-induced diabetes - low carbs helps there too. I was depressed with PMR - pred helped that when I finally got it.

[Stkeyna in reply to PMRpro]

Well done for getting down to 7! Hoping you can make it back to 5 and less. I made it to 3.5mg a year ago and then lots of relapses!

I was then eventually back at 15mg saw R. Hughes who gave me a booster and eventually got back to 8mg in April then sudden relapse and then stuck on 15mgs until September. Now back down to 12mgs. Side effects which are all new for me are: breathlessness, stomach bloating and heartburn, loss of appetite and rash on my back. Possible relapse today as very tired and headaches have returned. However.......

had operation at week-end on a troublesome kidney stone after the delights of renal colic pain. Kidney stones problems probably not helped by all the Adcal I have been having! It's been a fun few days! You have to laugh as came out of hospital, slipped and badly bruised my foot so now also hobbling around but there we are - c'est la vie. New day, new page!!

[PMRpro Ambassador in reply to Stkeyna]

Given the joys of renal colic (my paramedic daughter has had 2 bouts, the local NHS is being useless) I'm not surprised you are flaring!