Can't get 1mg prednisolone - trying to taper

[Pr0jection]

Does anyone else live in a country where 1mg prednisolone is unavailable, only 5mg. If so, how do you handle tapering? I'm currently on 7.5mg. Yesterday I started the first day of tapering very slowly to get to 6.25mg in 7 weeks and try to get to 5mg by the end of the summer. I did this by cutting a 5mg tablet into 4 sections with a pill cutter but it's not easy to get an exact cut. This morning I don't feel quite as well as I did yesterday, body feels achy and tingly, so I'm wondering if it's too early to start tapering. I've been on pred since August 2020 (started on 15mg), and on 7.5mg since October 2020. I'm 78 this year so I'm thinking that maybe I should leave well alone and just stay on 7.5mg indefinitely. Would appreciate any helpful advice. Thanks.

[DorsetLady PMRGCAuk volunteer]

Hi, That’s going to make life a bit difficult then....

Although would say that maybe you have reached your optimum dose - for now anyway. Plus you are at the physiological dose where your adrenals need to start waking up again, and most find that difficult at the best of times.

Personally I would stick at 7.5mg for another month or so, and then maybe try again.....

..and think the only way is to cut tablets as you are already doing...and an exact quarter us never going to be achievable, but it’s near enough...

This post on adrenals may explain the difficulty around the dose you are currently on -

healthunlocked.com/pmrgcauk...

[Pr0jection in reply to DorsetLady]

Th Dorset Lady. I'll take a look at the post....

[PMRpro Ambassador]

The DSNS (Dead slow and nearly stop) taper was originally partly developed for use by people who were on enteric coated pred which at that time came only in 2.5 and 5mg tablets and cannot be cut so it was 2.5mg at a time or use plain pred. Using DSNS starting with a long gap between new lower dose days and repeating each step 2 or 3 times did work for them.

It doesn't matter if the cuts are exact and you WILL feel the change in dose at first when the drop on that day is relatively large. When I first did it I could feel the effect of the lower dose for at least 3 times - and then my body seemed to decide it was fine, tomorrow it would be back to normal and so it wasn't worth reacting. I used to start a 1 day new, 7 days old and do that at least twice, sometimes 3 times, before going to 6 days between doses. Once the day after the new dose didn't feel as bad I moved to the next step. Eventually you get to a stage where you feel less well because of the higher dose!

When symptoms appear immediately after a change in dose it is usually the change in dose withdrawal effect and it often takes time to adjust. Just one day with less pred isn't as likely to result in a flare in inflammation and it would be a shame if you assumed the feeling funny was because the dose was too low - that has happened a lot in the past when going from every day one dose to every day the new dose without any sort of buffering.

Don't set targets and dates - just taking each individual step at a time helps and you may get to at least alterate days old/new dose which is also a big step down before you have to mark time for a bit. Every little helps as they say.

[Pr0jection in reply to PMRpro]

Thanks PMRpro, I don't feel quite so discouraged now. I will continue next week with the old dose, new dose DSNS method, and see how I get on.

[Pr0jection in reply to PMRpro]

Hi again PMRpro, having read your reply again I think I will do 2 or 3 weeks on the 1 day new dose, 7 days old dose to see if my body adjusts to this and then move on to the next step if I respond well. Good idea, thank you.

[SnazzyD]

A quick response of feeling generally bad will be down to the withdrawal and lack of adrenal function. I was able to drop by 0.5mg and felt every single one even when introduced over a number of weeks. So don’t feel discouraged. Coming down from 8-5ish mg is notoriously difficult too because the dose is not quite enough such that the body needs to make some of its own cortisol. But still the dose is a bit too high to trigger the system. I felt vaguely ill and fluey and weak and emotional until 5mg and then my body got the message. Anyway, can you get liquid Pred where you are? It comes in 10mg per ml so a 1ml syringe would allow you get 1mg.

[Pr0jection in reply to SnazzyD]

Thank you Snazzy D. Can't get the liquid Pred here (Cyprus) either. I popped into the pharmacy earlier to confirm. On the plus side, while there, I received a nice arm massage from a lady promoting a natural moisturiser. She said what nice skin I had which perked me up a bit even though I know she was in selling mode! Must stop being so cynical ha ha

[SnazzyD in reply to Pr0jection]

Tricky one that. She can’t say, “Madam you have the hide of a rhinoceros, use our cream”. But if she says your skin is like silk, you think you don’t need their cream. A massage is a good middle ground. Back to your Pred. When I was faffing about under 2mg I was fiddling with pills cut into a quarter. I doubt it was accurate but still felt less drastic.

[Pr0jection in reply to SnazzyD]

Thanks Snazzy D. I'm sure I'll get there in the end. Thank goodness we have this great support group. My poor Mum had no one who understood what she was going through, including me sad to say. I wish I could tell her that I now understand.....

[SnazzyD in reply to Pr0jection]

Ah ,there are so many things like that where one can’t possibly understand until it’s one’s own turn.

[Boss302Fan]

Can you take Prednisone instead? It’s available in the USA as low as 1 mg Tabs.

[HeronNS in reply to Boss302Fan]

So is prednisolone in countries where that is the default med. I think we've had other people in Cyprus saying they cannot get pred in a dose lower than 5 mg. I guess no one there is ever supposed to need to taper off the medication, PMR or not!

[GrandmaPirate]

In Belgium I get my Prednisolone prescribed and then it is prepared at a pharmacy at the desired dosage. I have 1 mg capsules of which I am allowed to take 2/day, then alternating 1 and 2 capsules/day to Come to 1 mg/day.

[Pr0jection in reply to GrandmaPirate]

You're very lucky to be able to do that. I'll have to continue cutting the 5mg into quarters but that means I'll be tapering at a slightly higher dose than I would like. Thank you for taking the time to reply....

[springeramber]

HiI live in Scotland and I get 5mg 2.5mg and 1mg prednisolone , don't know anything about prednisone.

However I don't think this will be any help to you, just irritate you!! The 5mg and 1mg both come from Accord in Barnstaple but the 5mg has NorthStar on it?

Best of luck - try and push them, don't see why they can't get different doses if they are from the same supplier?

[PMRpro Ambassador in reply to springeramber]

It all depends on the country - and the purchasing power of the local healthcare system. There isn't a great need for small denominations of pred tablets except for us, most reducing schemes are based on 5mg or 2.5mg steps and 1mg tablets often cost a lot more than 5mg tablets - the pred in them is cheap as chips and it is the production of relatively small runs that makes it expensive.

[alliebc in reply to PMRpro]

Oh, I wondered why the 1mg tablets were four times the cost of the 5mg here. I thought it was just a different manufacturer and was going to phone around the pharmacies next time. So now I won’t bother to embarrass myself!