Tapering disaster 🤦‍♀️

[CSMM]

Tapering question ?

After two weeks of trying the step from 15mg to 12.5 which has been a disaster sweating day and night and muscles aching I’m going to try the advice here two days new dose in 7 my question is 12.5 stupid should it be 13.5 or ????

[Hidden]

Generally it’s recognised we shouldn’t drop by more than 10% so at 15mg a drop of 10% would be 13.5mg - so try that as that extra 1mg may make all the difference. Good Luck 🍀

MrsN

[CSMM in reply to Hidden]

Thank you will go with that 👍

[SheffieldJane]

If I had reacted so violently, I would try 1 mg drops every 4 weeks or even 0.5 mg drops. Dropping beyond your tolerance will just send you back to the beginning, as will tapering when you are still very symptomatic.

[CSMM in reply to SheffieldJane]

Ohhh it’s I’ve realised that all has not been cured wrong word but feeling at 15 everything was ok and thinking ohhhh this is easy ... how wrong could I be 😩

[Hidden in reply to CSMM]

A lot of us do that. If you just remember there is no cure for PMR. All you are doing is controlling the symptom which is inflammation - that causes pain, stiffness fatigue etc. Your immune system will be attacking "self" until this activity burns itself out. All you can do is taper slowly so that you hit a lower dose that works like the higher dose did. I never dropped by more than 1mg and always tried 0.5mg. if the new lower amount controls the symptoms you are still addressing symptoms. If you suffer PMR symptoms then you have dropped too low with a 1mg drop I know I can go back 1mg and that will hopefully be enough. If you drop 2.5mg you don't know if your best dose is in the middle of 2.5mg. so you end up going back up 2.5mg instead of just 1mg. I always stayed on the new lower dose at least 2 to 4 weeks or at least until I managed to enjoy 2 weeks with as few a symptoms as I had on day 1 if steroids. So only drop by Max 10% and stay there long enough to know it's worked and the pmr needs less pred.

[CSMM in reply to Hidden]

Thank you so much for this 😄

[Christophene47 in reply to CSMM]

Tapering is very hard for most of us. I tapered from 6 mg to 4mg and I felt horrible. I went back up to 8mg and feel normal again. Even .5 can make a difference. Do not let any doctor force you to taper before you feel ready. I stayed at 4mg for a long time and would not raise my dose out of being stubborn. That was stupid on my part. I will never do that again.

[CSMM in reply to Christophene47]

Totally agree I’m doing it my way I’m staying on 15 till end of month then going to 14 I hoping for better luck this time . Thank you for your reply

[HeronNS]

I'd go with 1 mg at a time, and I wouldn't taper at all until those symptoms were under control again. I was fine at 15 for over a month, tapered by 1 mg per week, which was considered fast, but worked to 10 mg. Then I used dead slow method from then on.

[Rache]

You’ve been given good advice already but just wanted to add my own experience. It’s in the NICE guidelines to taper from 15mg to 12.5mg but they do mention their guidelines may not be possible for everyone. However, this is what my gp advised. I too had a return of symptoms after a few days and consulted the kind people on this forum. They advised me to try going up to 13.5 which worked! So in effect I had gone down by 10% of the initial 15mg. This is what is advised here for every drop. I also was a bit nervous about having a recurrence of symptoms on my next attempt at only a .5mg drop to 13mg, so I very cautiously only dropped one day the first week, 2 the second and so on until all week was at the new dose. So far this seems to have worked and I may try a gradual move to 12.5 by the same method this week. Last thing I want is a flare. Wishing you all the best coping with this condition. You will always be given good advice and kindness from the lovely people on this forum. I don’t know what I would do without it 🙂

[Hidden in reply to Rache]

Drs always seem to miss that thing about individual needs don't they! At least a sensible Dr will look at the whole patient.

[CSMM in reply to Rache]

Thank you so helpful 👍

[PMRpro Ambassador]

Given your experience with 2.5mg I would try 1mg at a time. It doesn't matter how you go about it you will NOT get below the dose your body and its PMR needs at the moment. 12.5mg may be too low - 14mg may not. In a month or two you may have got to 13 or 12 - but you aren't ready yet.

[CSMM in reply to PMRpro]

Thank you for this advice x

[JD4pmr]

I had to go back to 15mg two years ago after a tapering disaster - its taken me TWO years to get down to 5mg.

I now stay at the 'new' dose once its established for at least a month and every time I go down by .5mg [over a couple of weeks on and off at old dose] things go into remission and it takes time to get back on track. I've now had PMR for over five years - its a fine balancing act but light at the end of the long tunnel I do have days of 'normality' which keep the spirits up. Good luck.

[bunnymom in reply to JD4pmr]

That's nice to hear.. Normal days..

[CSMM in reply to JD4pmr]

Thanks for this everything helps 👍

[Hidden]

I'm currently dropping from 15 to 12.5mg and I'm doing it by 0.1mg a day - currently at 13.3mg. My body has not noticed yet fortunately. I guess i'm fortunate in that i have access to a lab balance and have empty capsules i weigh Pred into. Colleagues think i'm doing some illicit drug dealing I'm sure !

[HeronNS in reply to Hidden]

😂 that would be ideal I suppose but the rest of us are probably using inaccurate pill cutters, or knives, or thumb nails so we'll have to keep muddling along with approximate doses. I will be interested to follow your journey however as it could really show how slow taper gets one to the lowest effective dose. ☺

[CSMM in reply to Hidden]

Great thank you for this I was cutting up a 2.5mg with kitchen knife today not ideal god knows what I’ve made from that but hoping it adds up to 14 😩🤦‍♀️

[rockyandzeus]

Hi CSMM,

Go back to 15 and stay there for a month.

Then try a 1 mg drop using the dead slow schedule.

If you run into trouble again, go back to 15 and start over in another month, but only if you are feeling fine .

I am 'stuck' on 15 as well. I can't even get to the 14.5 mg point on the 1 mg drop before feeling like a train wreck. It's a disease you can not bend to your will... we all want to reduce and get off the stupid prednisone....

you might even want to get to 14.5 mg and hold there for 2 weeks to make sure your body can tolerate the drop.

If that does not work your body is saying that at 15 mg you are, for the time being, at the best dose for you, and try again later ...

Good Luck😄

Dorothy

[CSMM in reply to rockyandzeus]

Thank you Dorothy so helpful everyone ❤️

[Jocelyn344]

Tapering is difficult, but following a slow drop has been better for me. I drop by 0.5mg only, and follow the tapering schedule recommended by Dorsetlady. This means that you take 6-7 weeks slowly following a pattern where you drop by 0.5mg on some days, then do back up for others. Recommended as I have now got down to 10.5, whereas before I got stuck at 17.0 and then had a flare, or two.

[CSMM]

Thank you I tried 14.5 yesterday but I’m at 15 today think at the end of the month will try 14.5 as you say . It’s the sweats and aches soon as I go lower hopefully with all the sound advice on here I will get reduced it’s early days I suppose from March till now 20 to 15 mg .

[PMRpro Ambassador in reply to CSMM]

If it is immediately then it may be just your body protesting at the change it feels - some people are more sensitive than others. Give it a few times on a slow taper before rejecting it.

[Rache]

Just a thought - hot flushes are a common menopausal symptom

[CSMM]

A know and that’s the worst it’s not knowing i’ve Never had hot flush before 😩 do they last all day night I’m sick of this I’ve always been cold 🥶 I will get hormone bloods done if that will prove anything it’s just they came on so fast and I had them pre diagnosis then at 20mg to 15 mg nothing but since the tapering they are back but might be coincidence x

[PMRpro Ambassador in reply to CSMM]

If I get a return of sweats I know now it is a sign of my pred dose bordering on not enough. The worse they are, the further I have overshot the ideal dose. Dropping 5mg is a lot in the early days - did you do it in one step?

[CSMM in reply to PMRpro]

From 15 to 20 then 17.5 then 15 but the crazy idea of going to 12.5 has been the killer sweats aching tired so back to 15 for now will try next week again .

[PMRpro Ambassador in reply to CSMM]

And at 1mg at a time ...

[CSMM in reply to PMRpro]

Exactly xx

[Hidden in reply to CSMM]

Like Pmrpro, the sweats, particularly night sweats are a sign i am flaring. I have a bed side fan, always carried paper I could make into a fan. You can get cooling gel pillows...I have tried a big dog mat for my legs and it helped. I had flushed/flashes during menopause but had all but ended a few months before I started having pmr symptoms.

[CSMM in reply to Hidden]

Great tips I’d try anything and yes the night times are awful so so tired 😑

[Hidden in reply to CSMM]

Yes it's exhausting. Sometimes I had to change the bedding...which usually involved me just pulling a clean sheet round me!

[Rache]

During menopause I had them during the day too, although worse at night as they disturbed my sleep so much. I’m not an expert but if you had them pre Pred, could it be that the higher doses of Pred helped mask them? Although Pred now gives me the odd hot head sweat too, so it’s hard to know - maybe a blood test would be a good idea as you say. You have my sympathy - especially awful when you can’t get a peaceful night’s sleep x

[CSMM]

No I never had them till I took PMR I blamed pain killers but then realised it’s something some get with PMR it’s hard to say but yes it’s awful x