Your valuable advice please : After 2 years I'm on... - PMRGCAuk

PMRGCAuk

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Your valuable advice please

Legsy0714
Legsy0714

After 2 years I'm on 2mg from 15. Feeling good almost as if I could stop pred now.

Can anyone advise how to make the next reduction? 2 to 1.5 is 25%. 2 one day 1.5 next? All advice/shared experience gratefully received. Thanks.

41 Replies
oldestnewest

Hi Legsy you are lucky I was on 4 and had to go back to 7 so good luck.

Legsy0714
Legsy0714 in reply to Harrywogan

That was tough Harry. Hope you are back on track

Harrywogan
Harrywogan in reply to Legsy0714

Hi Legsy hoping thing will settle at 7mg.My daughter told me to slow down as I swim4 days and then do a 4 mile walk but find it hard but will try anything if it helps.

Legsy0714
Legsy0714 in reply to Harrywogan

Brilliant. Keep it going. Lots of wise voices on here.

I've just had to do the same. 4 or 5 times I've got down to 4 and once even to 3.5 - had a flare and had to go back up again.

Purple Owl feel mayb I have left thing for to long went back to7 but dont know if 7 enough and not sure if I should go back up more or give it a few weeks .

DorsetLady
DorsetLadyPMRGCAuk volunteer

I preferred this approach - healthunlocked.com/pmrgcauk...

There are other versions - healthunlocked.com/pmrgcauk...

Legsy0714
Legsy0714 in reply to DorsetLady

Thanks DL. Method 2 looks good. Thinking of 1.5 for new dose but still concerned it's a 25% drop. You'd think they would make more dosage options. I'm grateful for your help.Legsy

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Legsy0714

Would be useful..a 1mg can be cut in 2 quite easily, but 4? Likely to end up with dust.

All you do is give it a go!

Good luck.

Legsy0714
Legsy0714 in reply to DorsetLady

Perhaps the society could suggest to the pharma? They would stand to sell an increased volume if we could all taper more slowly and docs could recommend

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Legsy0714

Good idea...but some chance methinks!

Steroids are used for many other illnesses, and short term courses only - so doses below 1mg are probably usually only used in our illnesses.

The cost of 1mg steroid are pennies - small beer for big pharma.

Legsy0714
Legsy0714 in reply to DorsetLady

Ok. Didn't realise how cheap

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Legsy0714

1mg tablets - pack of 28 - 93p!

Legsy0714
Legsy0714 in reply to DorsetLady

Hahaha. Really?

123mossie
123mossie in reply to Legsy0714

I can cut 1mgm into 0.25, not perfect but ok, I use a little pill cutter with a blade inside.

Legsy0714
Legsy0714 in reply to 123mossie

Cheers. Available in pharmacy?

123mossie
123mossie in reply to Legsy0714

Yes from a small pharmacy, a green plastic one.

Legsy0714
Legsy0714 in reply to 123mossie

Great thank you

PMRpro
PMRproAmbassador

My advice is to resist temptation!!! People have found that 1mg, even 1/2mg a day prevents relapses!And use one of the slowed tapers we go on about - doing each step several times if needed then you have the new dose just one day at a time and eventually your body is fooled into thinking it's fine!

Legsy0714
Legsy0714 in reply to PMRpro

Gotcha thanks Pmr P

Hi Legsy, I’ve been on 0.5mg now for several months although occasionally I start t get headaches and sore knees/shoulders/scalp so a few days on 1mg usually does the trick. You could try 1.5mg 1 day and 2mg the next or one of the more gradual methods? Funny but I don’t seem to get the same PMR symptoms as 20 months ago when I started all this? Let me know how you get on?

Legsy0714
Legsy0714 in reply to Tonch

Thanks Tonch. It's a pity big Pharma doesn't offer more options for the lower reaches of reduction

I've been trying to taper to zero from 2 mg for about four years now. With varying degrees of success. I had a brief (about three weeks) flirtation with zero this summer. Back at 2 now. I got to zero by doing each step of the dead slow nearly stop taper twice over, in .5 mg steps. So it took me a year. No one can say I went too fast. And I obviously still need a nearly vanishingly small dose of pred. I was actually okay at 1 mg, and at .5 mg. But no pred wasn't good enough, and now I can't get back to 1 mg again. :( I should add that I started pred in June 2015 at 15 mg and had a very uneventful taper to 3 by the end of the first year, and then to 2. I was tapering in .5 mg steps by then, and had used the dead slow method starting at 9 mg.

Legsy0714
Legsy0714 in reply to HeronNS

Thank you Heron. Sorry it wasn't permanent.

How exciting. I would go down by half a one mg tablet, then leave it six weeks and drop by another half and so on. There really is no hurry, you are on a harmless dose but it just maybe holding things together. In fact I’d be content on 2 mgs forever apparently it can safeguard against a relapse ( according to Prof. Dasgupta) The slow pace is also helpful to your Adrenal function that is having to do the work again.

2mg "forever" for me Sheffield Jane. Slip in the odd 1.5mg when I think PRM not looking but, there's enough going on without complicating what seems to be working OK for me. Stay safe.

Thanks SJ. You don't think .5 is too much?

Well it gets hard to break up the tiny tablets, hence the big gaps between 0.5 mg drops.

Sure. Bromley 621 has a good suggestion below

I started at 15..went up to 20 ...then in two years made my way to 0. Not because I had a time limit though! I was fully prepared to go however long I had to. When I reached 2 I tapered by .5 (split a 1mg)...stayed until I felt good and tapered to 0 the same way.... .5 at a time. If I remember correctly (I’ve been lucky to be off for 2 years now) I stayed at those low levels for different times...I think I was at 1.5 for a month...1 for 3 weeks etc. Just stay until you feel good, you can always go back to 2. Just my experience! Good luck.🍀

Legsy0714
Legsy0714 in reply to -LJ-

Thanks for sharing LJ. Long may you stay free.

Try half of a 2.5 mg tablet plus half of a 1 mg tablet --equals 1.75mg. But ask the pharmacist for flat tablets -- much easier to cut.

Legsy0714
Legsy0714 in reply to bromley621

Great thinking thanks Bromley

Better at maths than me! I can’t break mine up because they are coated with a gastric protection shell. I have got my supply of 1 mgs ( gastric Coated) though after a minor panic.

Thats exactly what I do - and if I (or my pill cutter) ever cut the tablets a bit squint so that one bit is bigger than the other, I put them in separate little containers marked with the dosage they actually are, do the calculations and fit them into the reduction - which can actually be quite helpful as we start ‘inching down’ in such small increments. By using the accidental ‘miscuts’ I can reduce by 0.1mg sometimes😁... As someone in here said a while ago - It’s like a hobby - reducing pred🙄😂

Good to read your comments, as I am on the menacing attempt to go without Prednison,

I tapered to 3 mg, and felt so good, that I just

stopped taking anything, for 12 days now.

My rheum. Dr said, one year on steroids is enough, ( I was 10 months) he prescribed low dosis ones a week Methotrexate, well, I am certainly quite scared of my courage, and hope

not to pay dearly for it, ( Prednisone is always available!) with your great reporting I know

about with what dosis to start, ... (if all failed)

SheffieldJane
SheffieldJane in reply to Dunkel

Good luck Dunkel. “ Feeling good” sounds like some magical faraway land to me. I hope it continues for you.

Legsy0714
Legsy0714 in reply to Dunkel

Bon chance Dunk

In my last telephone consultation with Prof Dasgupta, he said I was aiming for 2.5 mg and he might keep me on that for life.

Legsy0714
Legsy0714 in reply to Maisiek

Interesting. Was your attack especially severe Maisiek?

Maisiek
Maisiek in reply to Legsy0714

Judging from posts here , it seems to be the latest thinking from the rheumies that we stay on a very low dose long term? He was very insistent at the same time about coming down from higher doses of steroids as soon as possible . Good luck.

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