Is it a flair or dur to tapering?

[krillemy]

Hi. I have gone down from 15 mg pred. (2 months) to 12,5 mg one month ago. First 2 weeks went fine, then the tiredness sneaked in on me and my son started to tell me that I looked tired. I then got pain in my muscles 2 hours after using them, and the feeling of being flu-like ill in the morning and heavy summing discomfort in arms and legs when I go to bed. I even noticed that I stiffer again even haveíng stiff hands, when opening the door with keys. Is this a flair or is it due to tapering? I took 15 mg a couple a days ago and it really helped. I stopped the VERY little exercise I do with a therapist, and try to do less.

So how much discomfort should I cope with during tapering? I have begun to work after 1 ½ year, and this will be difficult in the present state - any advice?

[SheffieldJane]

I would stay at 15 mgs until your symptoms properly settle and go for gentle reductions of 1 mg until you reach 10 mgs and then consider getting a pill cutter and doing further tapering of 0.5mgs. Work will put further stress on your system and will slow your progress. You must prioritise your rest. It is difficult to negotiate a helpful working pattern, for the sake of your health, with a new employer. If it is possible and you have a good employer try to do this. You are covered by the disability provision of the Equality Act but you would have to tell them about the disease. Good luck, I needed 20 mgs to deal with the initial inflammation, stiffness and pain, a significant number of patients do.

[krillemy in reply to SheffieldJane]

Thanks - rest is difficult, as I get bored when I´m feeling good I have been ill for so long. Does psychological (not physical) activity flair the illness? I am not stressed, but if I have a lot of appointments, I become more tired, with heavy legs ect.

Regarding work - I life in Denmark so the system here is different. However I have an advisory company, so I decide myself how much work I say yes to. It seems however that I never really know what condition I´m in. SO back to 15 mg from today.

[PMRpro Ambassador]

The most common cause of a fare is tapering too fast or too far. The actual illness hasn't gone away with pred, all the pred is doing is mopping up the inflammation and relieving the symptoms it causes.

The time scale suggests to me you are very slightly too low - it may well be you are fine at 13mg and that little 1/2mg is a bit too far for now so that the inflammation has built up enough to cause symptoms. I'd go back to 15mg for a few days and then try 14mg on the way to 13mg.

However well you felt at 15mg before you dropped the dose is your guide. You are now aiming to find the lowest dose that gives the same result - you should never feel worse at the end of a taper step than you did at the start. There are a few slowed tapers - here is a link to the one I worked out and which is in use in a clinical study:

healthunlocked.com/pmrgcauk...

You can use it with any size drop but the smaller the step the less likely you are to develop a proper flare. No reduction step should be more than 10% of the current dose, at 15mg that is already only 1.5mg and by 10mg is 1mg. So using 1mg at a time from 15mg usually works well.

[krillemy in reply to PMRpro]

Thanks - I just took more, so 15 mg today. Aming for 13 as you all suggest. I am seeing a new Rheumatologist on tuesday, and I hope to have an official PMR diagnosis, so that he can help and follow me since my GP will not on his own. The physiotherapist told me yesterday, that she still think it fits with MS, but reading on the site - I am more than convinced of PMR. By the way - can you buy 1 or 2 mg tabl. in the UK?

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

In UK 1mg and 2.5mg tablets as well as 5mg are prescribed.

[krillemy in reply to DorsetLady]

Thanks - I try an online pharmacy.

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

Why are you buying them, and not getting on prescription?

[krillemy in reply to DorsetLady]

I have a prescription, but here in Denmark where I live, they are only markedet as 5 mg - nothing less. I just found out that my DK prescription is valid in all EU countries. So I can buy online

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

Ok, that’s good. Let’s hope it continues after ‘youknowwhat’ happens ...or doesn’t!

[krillemy in reply to DorsetLady]

[PMRpro Ambassador in reply to krillemy]

You can always use the Dead Slow taper for larger amounts, that's why it was developed originally because patients in the UK using gastro-resistant tablets only got 2.5mg tablets which can't be cut. Some struggled with any plain pred however small the dose. Now you can get 1mg gastroresistant tablets which means it is much easier. And of course, it doesn't matter how accurately you are able to cut a tablet - as long as it is less.

[ncfaaeos in reply to krillemy]

I live in Denmark too and have been given 2.5 mg tablets, which I think is the smallest dose one can get here. I have been able to halve and quarter these in order to taper as slowly as possible (am at 10.6"ish" right now).

[DorsetLady PMRGCAuk volunteer]

Just to add - for future reference you can get steroid withdrawal symptoms - but they usually come on 1st day on new dose and last for 2 of 3 days until you body gets used to new lower dose. If problems start about a week or so after you’ve dropped it usually means you are on too low a dose - and you flare.

Other than that follow advice already given on smaller reductions.

[krillemy in reply to DorsetLady]

Thank you, also for the last on withdrawal, that is very good to know!

[survivalist in reply to DorsetLady]

I got down to 6.5mg but after about a week got PMR and GCA headaches so went back to 10mg yesterday ( great day solved the issue ). On 7.5 today , a level where everything was 100% a month ago . Will probably go down to 7mg which was also OK I think in two weeks time.

Its amazing how sensitive people are to pred I'm a big lad over 90 kg but 0.5mg too little pred is all it takes over a week to allow the effects of PMR to return.

Tracking the lowest level that deals with all issues is a bit tricky as that level changes over the persons PMR burnout timescale . I needed 8mg to be100% a couple of months ago. Now I'm pretty sure the level I will be OK on is 7mg.

Unfortunately this doesn't mean my burnout rate is as simple as 0.5mg per month as the pred requirement due to PMR burnout appears to be a % of reduction. In my case it appears to be about 6.25% pred reduction per month.

[PMRpro Ambassador in reply to survivalist]

The decided impression I get is that the activity of the underlying autoimmune disorder that causes the inflammation cycles over time - it doesn't decline in a straight line but something more like a sine curve, falling off for a while and then increasing again. But all the time the peak level reached tends always to get lower so that a plot of those points forms a straight line. If you reduce too fast you may get to a lower dose during the downward phase - only to be caught out by an upward phase a bit later. Slower reduction means you miss those quiet periods but do always get lower overall. If you see what I mean ....

[survivalist in reply to PMRpro]

Very interesting ; This in engineering would be called a second order control feedback system, very common in engineering and I suppose we are machines of some sort . The Sine wave of trouble etc swings about dampened down by the feedback ( in this case the body adapting or fighting off the illness with the illness fighting back each time one side gets the upper hand ) causing everything to diminish to zero. Eventually LOL

[krillemy in reply to survivalist]

Yes but that kind of feedback in biology are mostly seen when pathogens are involved, like bacteria. The immune system however also have a lot of cells, so I think you are right - also about us being machines.

[krillemy in reply to PMRpro]

Yes I see the picture. Wonder what the biology behind it is.

[krillemy in reply to survivalist]

It seems I have a lot of calibrating in front of me - thanks

[pugrescue in reply to DorsetLady]

UGH,,, dropped from 22,5 to 20 a wk ago, fine first few days, not so much now. Have been stuck between 25 and 20 for more than 4 months. Added MTX 7 wks ago, no real problems with it but no real help that I can see. Thks for the post re flare vs taper .....

[Tiredcat in reply to DorsetLady]

I found this explanation very helpful too, Dorset Lady.

[Daffodilia]

You can get a 2.5 pill for tapering so don’t need cutter til below that

[Rene20]

You can get 1mg pred on prescription.

[PMRpro Ambassador in reply to Rene20]

In the UK and USA - but not necessarily in mainland Europe.

[PMRCanada]

Discerning between pred withdrawal symptoms, a flare, or too much physical activity can be difficult.

As mentioned, if you notice soreness/stiffness directly after you lower your dose, it is likely pred withdrawal and will often disappear over time. If you feel ok for the first while and symptoms appear and worsen later on, it’s probably a flare which often requires increasing pred for a time. If you’ve done physical activity beyond a certain point and tax your muscles, you can experience DOMS (delayed onset muscle soreness) for which you will have to rest and only return to activity VERY slowly.

To me, it sounds like you are experiencing a flare. I had a similar experience last spring when I went down from 9 to 8.5mg (yes, even a .5mg drop can trigger a flare). First 2 weeks of the month I was fine, last two weeks I got progressively more stiff and sore. So I took a one week pred burst and landed back at 9.5mg for a month.

It can all be very confusing but you will improve your ability to listen to your body, and the fine folks on this forum are here to help. All the best with your work situation as well. If you get your dose right for the level of your disease activity/inflammation , it will make much more doable.

[krillemy in reply to PMRCanada]

Sounds like a flair then. I will stay on 15 mg until feel like before - and then go down more slowly - thanks