An update on recent tapering blip...

[Louisnhoe]

Following my recent attempt to taper from 4mg to 3.75 and the return of symptoms I abandoned all thoughts of continuing with it and remained on 4mg in the hope that it would sort things out. My ESR test came back at 31 ! From 15 when I was on 5mg back in the summer. I have had a GP telephone review today and doc advised going back to 10mg. After some discussion we have agreed as per advice on this forum to add 5mg for about a week and then drop to 4.5 which is just above where we think it all went wrong.Even though I was feeling good on 4mg maybe it wasn't quite enough and inflammation was slowly building.Although I am disappointed with this I do feel well supported with this forum and my GP's willingness to 'give it a go' when I make suggestions re dealing with setbacks like this. He is going to check in with me again in 3 weeks time .Hoping to be back on track by then. PS..my grandma duties with my 2 year old grandson have been postponed. I adore him but am quietly relieved 😌..!

[DorsetLady PMRGCAuk volunteer]

I would step back down in 2 steps -and stay at interim dose (7mg?) for 5-7 days before going down to 4.5mg.

Then no rush to reduce……

Probably good that you don’t have grandma duties for a while…

[Louisnhoe in reply to DorsetLady]

Thank you..I will do that and keep fingers crossed for all to be ok back on track at 4.5..I really don't want to start again from 10mg .! Next review 20th December..watch this space....

[DorsetLady PMRGCAuk volunteer in reply to Louisnhoe]

you don’t need to “start again” from 10mg with a flare-just make sure all under control at that dose though.

[Louisnhoe in reply to DorsetLady]

Thank you..yes I guess that means staying on 4.5 for probably several months if all goes to plan..I really appreciate your input and thoughts on this..the ups and downs can be quite a trial. .Great to have you all there for all your reassuring words of wisdom..

[DorsetLady PMRGCAuk volunteer in reply to Louisnhoe]

Well, how long is up to you-but some enlightened Rheumies suggest their patient don’t try and reduce during long cold winters …. so play it by ear!

[PMRpro Ambassador]

Yes - hope it is a fairly long postponement! And I agree with DL on the other points too.

[Louisnhoe in reply to PMRpro]

Thank you for your input..as I said to DL ,'watch this space'.....

[piglette]

If the increase in the ESR is caused by the PMR that sounds a very sensible move. If you feel fine it may not be the PMR of course as several things can cause an increase in inflammation markers, even a cold.

[Louisnhoe in reply to piglette]

Thank you piglette..return of symptoms and increased ESR is all pointing to a flare..am treating as advised and will be in no hurry to upset things by reducing too soon if all works out..am trying to see it as a bump in the road that I am hopefully going to flatten out over the next couple of weeks..!

[piglette in reply to Louisnhoe]

If you have return of symptoms I just up by 5mg for about a wek to hit the PMR in the head and then drop diwn to where I was last comfortable, which is much what your doctor suggested.

[Joseph14612]

Are you careful about diet? Avoid foods that cause inflammation? It has helped me quite a bit...

[Louisnhoe in reply to Joseph14612]

Thank you for your reply Joseph 14612 and yes I have a very healthy and varied diet. Low carb, hardly any processed food and plenty of oily fish, avocado,nuts. etc.I have even switched from white wine to red when I fancy a glass at the weekend ! I feel total restrictions of things we enjoy just adds to that 'fed up' feeling I think we all get from time to time. Wishing you well with your ongoing PMR journey and thanks again for your response..

[arvine]

Hello Louisnhoe, well I am down to 4 mgs now for about 3 mos, started at 40, and it,s been over 6 years now, lot of factors contributed to that journey, but wondering, how do you manage a half, or 3/4 of those little 1 mg pred tablets, ?

[Louisnhoe in reply to arvine]

Hi arvine.. here in the UK our tablets come in 5mg, 2.5mg and 1mg .With a pill cutter you can usually come up with the combination you need although I haven't tried to cut a 1mg yet however there are some who have and they will probably be along soon to share their techniques!

[DorsetLady PMRGCAuk volunteer in reply to arvine]

Use a pill-cutter.., easy to use and easily obtained-any pharmacy and good old A.. online.

[arvine in reply to DorsetLady]

Oh Ive had pill cutter for long time, but getting even half one mg, never mind 3/4, is a real challenge I find

[Sharitone in reply to arvine]

If you have plain 2.5mgs, you can get 5/8 mg by cutting them in 4. I have dropped by 1/8 at a time after hitting problems at 4mg

[Louisnhoe in reply to Sharitone]

Hi Sharitone and thank you..I will keep that in mind for the future..currently still dealing with this flare on 7mg for a few days then dropping to 5mg for a while..feel like I need a break from trying to taper..Best wishes to you..