Half mg Pred

[Portobello]

I have managed to get to 5 mg from 15 a year ago. Thank you Dorset Lady- your method has worked for me! Everything I've read suggests it would be a good idea to slow down now to avoid adrenal insufficiency. So I spoke to a GP today to request 2 1/2mg enteric coated tablets so that I could go down to 4 1/2 mgs. She adamantly informed me it wasn't part of the regime/guidance to go down by half a mg and I should go straight to 4 "because 4 and 4 1/2 are the same really. Believe me." 😩. I have some plain 1s which I could try to cut and mix with coated. Or.... should I just try what the lady instructed?

[PMRpro Ambassador]

Believe ME lady doctor - 4mg is NOT the same as 4.5mg in the context of PMR, pred, adrenal function and tapering! Have YOU been on long term pred and had to taper off? What arrogance!

Either use the plain ones or use one of the slow tapers to smooth the 1mg change:

healthunlocked.com/pmrgcauk...

The DeadSlowNearlyStopped one (the one I developed) was partly expanded to accommodate the fact that at the time you couldn't get 1mg enteric coated tablets - you had to use plain pred of go 2.5mg at a time. Some people can't cope with any plain pred at all.

[Gallagher1a in reply to PMRpro]

Funny you saying that because when I first got diagnosed withPMR 4years ago I had my first prescription from the private rheum I I went to and paid for it in Tescos pharmacy (it’s was very cheap under £3 for the tablets on a private prescription in England ) as I was running out I went to my GP in Wales and got a prescription for pred and was given the uncoated ones ,it was near Christmas so everything was closed for days they made me feel really ill , I felt like I was constantly sucking a 2pence piece it was awful spoilt my Christmas .When I ask the pharmacist if I could get the coated tablets she said they didn’t do them I also asked the GP at a later appointment for them and she answered if the pharmacy said they don’t do them they don’t ! I now have the 2.5 ml coated tablets without asking for them!when you are up against the wall and suffering sometimes you haven’t got the strength to insist.

[PMRpro Ambassador in reply to Gallagher1a]

I knew 1mg enteric coated were available - and provided the details for people to use. Still had pharmacists insisting they couldn't be got. Small independents are best - Boots, who now belong to the same group as the company that makes the 1mg tablets, are the worst.

Now why doesn't that surprise me?????

[SnazzyD]

Where do they get these ideas from? I would really love to have a conversation with some of these docs. They clearly don’t really listen to their patients or their patients are very uncomplaining. I have been on enteric coated which of course you can’t cut. When I got to there low doses I sometimes had no choice but to mix and match. I just took the enteric first and the non-enteric a few hours later because they get into the system more quickly.

[PMRpro Ambassador in reply to SnazzyD]

Then there was the one who claimed that plain pred and enteric coated pred was absorbed at the same rate ...

[DorsetLady PMRGCAuk volunteer]

Totally agree with PMRpro - 4 and 4.5 are definitely not the same! If GP doesn't play ball you can use my longer or ultra long taper... or get another GP!

[Portobello in reply to DorsetLady]

Thanks. I'll work round the medics! Unfortunately when requesting a phone consultation in my large practice you're at their mercy and allocated a GP at random. The current system needs a lot of work!!!

[DorsetLady PMRGCAuk volunteer in reply to Portobello]

Very true!

[LittleBetter123 in reply to Portobello]

When I had to take half tablet doses ie 12.5 my rheumatologist advised taking 3 x 5mg tablets one day and 2 x 5mg tablets the next day thus by alternating the dose over 2 days I was getting 12.5 daily. Pethaps this could work for you too if you take 4 x 1mg one day and 5 mg on alternate day especially if your really up against it with your doc.

[Yellowbluebell]

ignore the idiot and cut up your plain uncoated tablets. The woman needs lessons on how pred works. Good luck. YBB

[HeronNS]

Akkkh! I've just learned to my cost that even .5 mg is not the same as zero! Many a doctor would say half a mg can't possibly be doing anything, Sigh.

[tangocharlie]

I would print of the DSNS method, say it is endorsed by Dr Sarah Mackie, one of the UK's or even world's specialists in PMR and if she doesn't agree with it to speak to SM who I am sure would love to talk to her as she is going to be involved in educating GPs.

[tangocharlie in reply to tangocharlie]

Actually I think I'm wrong, the DSNS doesn't mention going down by a half does it?

[PMRpro Ambassador in reply to tangocharlie]

When it was developed there was no option if you used enteric coated - 2.5mg at a time if you couldn't use plain pred and many can't. So if you can't do 1/2mg, you do a slowed DSNS!

[Longtimer in reply to tangocharlie]

She`s going to have a hard job on her hand if she will be educating some of our arrogant GP`s that have obviously never had PMR!...I wish her luck.....

[tangocharlie in reply to Longtimer]

That's why she's doing it. I think education of doctors has to be a top priority. Their ignorance of how to diagnose and treat this disease causes most of the problems that crop up in this forum

[Longtimer in reply to tangocharlie]

Absolutely, certainly caused me the problems I have now, well lots of them anyway.....brilliant to hear it....One wonders who taught them what they know, or rather don't know in the first place....

[tangocharlie in reply to Longtimer]

One thing the charity could work on is to make sure the guidelines are perfectly clear that each case is different, it doesn't magically go away in 18 months and it isn't cured after the initial dose of Pred so that you can just reduce the steroids by a fixed taper every calendar month. All the guidelines are ambiguous and need more guidance for GPs.

[Blackcatlover]

I just snap the 1mg tablets in half at the line. They aren’t always exact but very close.

[Portobello in reply to Blackcatlover]

Yes thanks, I can do that, but am nervous about taking any uncoated due to stomach issues which have not resolved despite different PPIs and also Ranitidine when it was available. I'll give it a go though alongside yoghurt!

[Blackcatlover in reply to Portobello]

I take mine with an English muffin. Seems to make my stomach fine.

[Luciejc in reply to Blackcatlover]

My prescription bottle says to take with milk. I do and have no problems.

[Hayling1 in reply to Portobello]

I take mine with a probiotic eg Actimel

[Purple-Owl in reply to Blackcatlover]

My uncoated 1mg tablets don't have a line. They are tiny, about 6mm in diameter, and crumble when I try to halve them. They are NHS issue in the UK.

[Blackcatlover in reply to Purple-Owl]

Sorry to hear that. My pills in the US are much tougher. They hold up when split.

[DianeA1]

Not only are 4 and 4.5 not the same, but 4.5 and 4.75 aren't the same either.

When I got to 4 mgs I started reducing by .25 mg at a time. Little by little!

[Gumnut]

I sympathise Portobello. My GP said the same and was adamant there is no 2.5mg enteric coated! I am also back at 5mg and reduced by 1 mg month but too fast a reduction. I will ask GP again and for 1mg non enteric coated so can cut in half. Sounds like we are at the same stage. Good luck😊

[Leepeelee in reply to Gumnut]

If you hold the 1mg tablet on a hard surface, rest a razor blade on the centre and push down gently, it usually cuts it in half quite well, you may get a few crumbs but you can just mop them up on a wet finger.

That’s how I cut my 1mg pills in half, seems to work ok

[Gumnut in reply to Leepeelee]

Thank you for the tip Leepeelee. Is that coated or uncoated 1mg?

[Leepeelee in reply to Gumnut]

Uncoated, but if you take the uncoated with yoghurt it should protect your stomach, or at least help project it

[Leepeelee in reply to Leepeelee]

My Gp is useless, he recommended that I don’t take alendronic acid, he also disagrees with taking Vitamin D supplements whilst on pred!

[Bobbury in reply to Leepeelee]

What!! really.... the GP needs to wise up me thinks....

[Bobbury in reply to Leepeelee]

On the Preds that I get on one side there is a line that goes right across the tablet, it's works using that line to cut in half and I can do it with an ordinary knife

[Lockdownsucks]

I was advised by my rheumatologist to try 4mg/5mg alternate days, maybe this would help achieve a 4.5mg dose?

[Suffererc]

Good at maths then your GP. 4 and 41/2 the same?????

[MamaBeagle in reply to Suffererc]

Bet she doesn't think that £4 and £4.50 are the same. But then she's on mega GP salary do perhaps she does 🤔

[Portobello in reply to MamaBeagle]

Love your analagy 😊

[Megams]

~How incredibly myopic of your GP - quite frankly her attitude is right off the mark and obviously never been on steroids long term?

Good luck ~

[Telian]

Clearly your GP doesn’t know very much of the experiences some of us have when reducing.

Like you are now I did as asked by my Rheumie and reduced by 1mg from 5mg to 4mg - it felt as if my whole body had been poleaxed - couldn’t move for two hours and the head to toe pain was horrific. That reaction came on so quickly as well - one minute was upright the next was too ill to know what was happening to do anything.

I might be extreme though as a sensitive soul to lots of meds. Since then it’s .5mg reductions for at least 6 weeks. I’ve never got below 3mg in 6 1/2 years. Never needed to chop 1mgs as have 2.5s. I’ve recently flared and back to 10mg but can only reduce by .5mg second time around. I could do 1mg originally until reached 5mg.

Even my new Rheumie, Sarah Mackie, doesn’t instruct she asks me what reduction I can do, for how long and relays it to my GP. That’s why they get so far listening to their patients and learning - which clearly your GP hasn’t yet. Try another GP in your practice and say how you feel.

It’s up to you but at that dose I’d try the .5mg first of all. Bit of trial and error at this stage until you find what suits you as we are all different.

[Bobbury]

I've been on pred the same amount of time 15 years and I can definately say from my own personal experience .5mg certainly makes a difference. I do from time to time try to reduce and I do this by . 5mg. For me though being on 4.5mg only lasts several months, then I get a flare up. So, unfortunately I don't try and taper any more, it really is not worth all the pain.

Doctors just don't have a clue about PMR. The other day I had a shingles injection and whilst I was there the doctor suggested I should try and reduce Pred. Short answer was "NO" it's not going to happen. The doctor was taken aback by my short shrift answer.

This scenario is not new they always keep on about reducing and I keep telling then "NO"

It gets boring and monotonous being told the same thing over and over, hence the response.

If doctors were that concerned, why is it I have to push them to get a blood test just to check. When I see a doctor for whatever reason, they never say"oh" your last blood test was over 6 months ago, lets get a blood test!!! Doesn't happen until you push them.

I don't care what they think, I know my body, I know the pain I go through when trying to reduce. I'm quite happy where I am, thank you!!!

[lizg0017]

No, 4mg is not the same as 4 1/2mg. I just put myself back up to 5 this past week. At 4 1/2 my headaches came back, three days of a migraine, fatigue, muscle ache, depression, etc. My body, in my opinion, just was/is not ready for any dose below five just yet. So here I am, at 5mg for who knows how long. Best of luck to you. Oh by the way, I broke my 5mg tabs in half then took 2 1mg tabs to equal 4 1/2.

[Notspeedy]

When I tried to go straight from 5 to 4 in early February, it was a disaster. PMR came back with a vengeance. I am now coming down from 7 in half doses and I am sure it is better. If you use a sharp small kitchen knife, you can cut the 1s in half fairly successfully most times.

I am now going to continue the 1/2 reduction approach!!!!!

[Hidden]

Please can you tell me how to obtain Dorset lady method? Thank you.

[Portobello in reply to Hidden]

Dorset Lady- please can you help with Goldfinchs query. I'm sure the different methods are in Pinned Posts but I can't find them, or a link to the spreadsheets from my tablet. I know they are there somewhere because I've got copies. Sorry I can't be of more direct help Goldfinchs.

[Hidden in reply to Portobello]

Thank you so much for checking Portobello. 😃