weird dosage of pred

[Pol53]

hi all not been about in a while had so much happen in a short space of time ☹️I lost my mum 2 days b4 Christmas , I was already in a flare ( I have flared 4 times when reaching 8mg ) and rheumatology didn’t get back to my 4 calls ( answerphone service) so I upped my dose myself the same as the last time in. Flare I was instructed - then my gp refused my pred so I basically had keep ringing rheumatology managed ti get tablets off them - so new rheumatologist - talked fast liver inflamed everything going haywire so then he says are yu ok with 10mg I said yes and he prescribed 10 mg for a month then 10.9.10.9 etc fir the next month

I went to pick up the pills and pharmacy calls me in to discuss this odd dosage and said he thinks I’d be better in 6 weeks of ten and 6 weeks of 9 - I’m still confused as I struggle from 9-8 ( which I told him I tried last time as 10-8 I flare but I still flared from 9-8

Anyone else had this strange up and down dosage ?

[DorsetLady PMRGCAuk volunteer]

I’m sorry about your mum… very stressful time for you.

Some Rheumies do go for the alternate day approach to tapering… not something that most of us on here like [as you say an up and down approach] but it works for some patients.

Think your pharmacist has a better idea.. or even 4 weeks at 10mg, 4 weeks at 9.5mg, 4 weeks at 9mg. Same result at the end of the 12 weeks.

But as you keep flaring at same dose maybe in future introduce one of the slower tapering plans we talk about on here and only 0.5mg a time. As your new Rheumy seems okay, perhaps discuss that approach with them.

Good luck.

[Gala123 in reply to DorsetLady]

I have spoken to a pharmacist today, as I am also now between dosages (3 and 4 mg). These tablets are hard to cut in half, so I asked what is best 3-4-3-4 or 3.5 daily. He said 3.5 daily is better, even if when I cut the tablet it might crush and the half would not be measured exactly. It just gives a more consistent dose before going down to 3.

[DorsetLady PMRGCAuk volunteer in reply to Gala123]

Are you using a good pillcutter? There is a knack to it, but most seem to manage.. The pharmacist is right - it doesn’t have to be exactly half just so long as it’s less than the dose you are reducing from. .. and many will testify that at lower doses reducing by only 0.5mg is a godsend.

[Gala123 in reply to DorsetLady]

I am now sure if it is a good pill cutter. I just bought one from Boots. he pharmacist I asked for advice said that it helps to put the pill a bit way from the corner rather than in the corner. I have not tried it yet. Will give it a try.

[Pol53 in reply to Gala123]

Hi gala couldn’t he give you a 2.5 and a 1 mg pill ? I know my pharmacist said the 0.5’s are expensive but the 2.5s are handy

[PMRpro Ambassador in reply to Pol53]

As I said below - the 2.5s as plain pred are also expensive and often if the GP prescribed them they are dispensed as enteric coated and that can change the dynamics too.

[Gala123 in reply to Pol53]

My pharmacist just said that that other form are not available. Now that I decided to cut them, I am happy and would not pursue this, but I feel that we are let down by the system, as it is a known fact that slow tapering is important and there should be straightforward solutions for this.

[Pol53 in reply to DorsetLady]

Thanks Dorset lady yes I mentioned the 0.5 he said they’re expensive I asked for a box of 2.5 to make the 9.5 so that is a possible option seen as the 0.5 s on their own are expensive I think I’d prefer this too - I didn’t like the idea of up and down - the pharmacist called me in to discuss it as he’d never heard of it

Anyway I will try that - thanks for the condolences xxx

[PMRpro Ambassador in reply to Pol53]

The trouble can be that 2,5s turn out to be enteric coated because they are relatively cheap but they aren't absorbed as fast as plain. Actually, what often works better is cutting a plain 5mg to get 2.5.

[DorsetLady PMRGCAuk volunteer in reply to Pol53]

Yes they are expensive -but plain tablets can be cut -or you can mix -as you say,

Best wishes in difficult times -hive send your reply to PMRpro -and agree new GP required.. 🌸

[PMRpro Ambassador]

First of all - so sorry to hear about your mum. And at that time of year it feels so much worse doesn't it? Dealing with bereavement is always hard, when you have an illness that needs pred it is even harder.

Secondly "I have flared 4 times when reaching 8mg " - that is your body telling you that you need 8 or 9mg to manage your inflammation. You are NEVER tapering relentlessly to zero - whatever your rheumy may try to suggest. You are titrating your pred to dose to find the lowest effective dose, the lowest dose that gives the same result as the starting dose did. And for you, at present, that is 9mg. It doesn't mean you won't get lower, just not yet. By flaring and going back every time instead of listening to your body, you end up taking more pred ad for longer than if you accepted the lesson it is trying to tell you.

The alternating dose like that is often a suggestion by rheumies to soften or smooth the transition from one dose to another - and it ls also present at some point in all the tapering options we talk about on the forum. It is just that our version don't just go from one dose to another in a single jump and the smoothing seems to help many patients get past what has been a hurdle before.

As for your GP refusing your pred - appalling and needs dealing with. They above all should know they can't just stop pred for a longterm patient. At least your new rheumy seems rather more practical and sensible!

[Pol53 in reply to PMRpro]

Hi PmrPro - yes it was devastating 😢 we found her just one day before Christmas Eve when emotions were excited was awful 😢 I miss her so much but I’m lucky so so lucky to have a great sister and 3 wonderful daughters and we are all helping each other thru xx - I’ve reached the point where I don’t like the way my go practice are so I have decided to change up to the one near the hospital - they made out because I decided to double my dose myself that couldn’t give me any pred despite me telling them that these were nhs rules - when I finally got a call back from rheumy I broke down on the phone and she told me that I had done the right thing I said someone needs to tell my gp practice this ! As denying me my pills is dangerous - in rheumatology they do make you feel like your aiming for zero - so you always get disappointed- but I agree with you 💯 I tried the second time to go thru the pain and see well really see if I could that it might right itself so to speak and realised it really doesn’t work like that - thanks for the advice it’s much appreciated x

[PMRpro Ambassador in reply to Pol53]

How awful for all concerned. It always seems so strange to me when people are talking about their mothers on here - mine died 23 years ago and was a good age then!

I was just looking back at your posts - you have done well getting to 4mg, there is no hurry now, and at least you have a good rheumy even if the GP obviously don't come up to scratch,

[Angelsmummy]

So sorry for the loss of your mum,must be heartbreaking for you.Xx💐💐

[Pol53 in reply to Angelsmummy]

Thank you 🙏

[TandemTime]

Very sorry to hear about your mum 😢

[Pol53]

🙏 thank you

[August7]

I am so very sorry for your loss and the physical pain you are also enduring. Sending all good thoughts and very glad you have the experts above to advise ..please look after you🫂