How long will I be ‘stuck’

[jaycee444]

I know, I know - how long is a piece of string!! I have been trying to reduce down from 7mg since April and my body just doesn’t want to know. After a week pain starts kicking in again and I have to up my Pred for a week then start cutting back again. I took me quite a few months to reduce from 8 to 7 mg but I really do not seem to be able to get any lower right now. I have tried leaving it a few days in the hope that things will improve but of course they dont. How long should I stay here before I try again. I dont want to keep yo-yoing up and down but I would have thought that after 4 months??????

[PMRpro Ambassador]

Not how long but how active the underlying disease process is. As long as that is present you will need some pred - how much depends on how active it is.

You atarted at a dose well over what it was hoped you would need and then you tapered the dose in a process called titration to identify your aim: the lowest effective dose for YOU. Your body, your disease, your needs. You aren't heading relentlessly for zero and you appear to have arrived at your destination. It doesn't mean you won't get lower, just not yet.

How are you dealing with these flares due to trying to force a reduction? All you should need to do is, at worst, add 5mg to the dose where you flared for a few days and drop straight back to the dose you were last good at. There is no need for long increases or very high doses - but you do have to consider that even adding 5mg for a few days negates a lot of that perceived benefit of dropping 1mg quite quickly. I think trying a reduction every 2 or 3 months is probably worth it but at this level when you are obviously so close to the dose you need it should be 1/2mg not 1mg, Are you using a slowed taper? Maybe slow it even further. But if 7mg is what you need - it doesn't matter how you try to sneak it past, you won't manage well on too low a dose.

At this level there is also the problem of adrenal function needing to return - just to make it more complicated.

[jaycee444 in reply to PMRpro]

Thank you PMRpro. I have got away when I catch problems straight away by just adding an extra 1mg but the last time I had to add 5mg for 10 days and then back to 8mg for a week 7.5 for a week and then back to 7. Am trying to drop in 0.5mg reductions every 4-6 weeks.

[PMRpro Ambassador in reply to jaycee444]

"I have got away when I catch problems straight away"

Exactly - that is the trick. You must admit when it didn't work and do so quickly. It will work one day so you do need to keep trying but not make it the be-all and end-all of your aim. Your aim should be to live as well as possible with PMR, getting to a lower dose is secondary now. You are at a reasonably low dose that rheumies have usually stopped panicking about. Now it is about patience. And acceptance that this is where you are - and it is fairly good really.

[jaycee444 in reply to PMRpro]

Yes you are of course so right and It really isn’t me being impatient its the thought of how my Rheumatologist is going to see it at my next visit! I am determined not to have any other drugs added to the list to try and get me down quicker. I am lucky in as much as I dont have too much in the way of side effects from Prednisolone , my weight is stable and my bone density good.

[PMRpro Ambassador in reply to jaycee444]

Wonderful word in the English language: NO!

Any chance of support from the GP?

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro-and I’d stay at 7mg for at least a couple of months.Don’t regard it as “being stuck ” -but as”this is what I need at the moment”.. once you stop pressurising yourself and relax you’ll probably find you can reduce..

Sometimes it’s just not the right time! So go with the flow.

[jaycee444]

Thank you DorsetLady. I am happy to stay the course at 7mg. It’s more the worry about how the Rheumatologist will see it. I do wish I was in charge of my own reductions.

[DorsetLady PMRGCAuk volunteer in reply to jaycee444]

Yes, I appreciate that.,,but as PMRpro says at 7mg and below some Rheumies really need to realise the implications of Pred are considerably reduced -and the onus should be more on patient’s wishes…

Sorry - dreaming of an ideal world again 😊

[Suffererc in reply to DorsetLady]

Why do we worry about our Rhuemies and GPs pushing us to zero. It doesn’t help. The tone ‘you have been in Pred a long time’ isn’t helpful

[borednow in reply to jaycee444]

What is the Rheumy going to do? I would have thought worst case scenario is that he/she will refuse to see you again. Can they do that? Surely if you explain things slowly and patiently to them, they'll have to respect your feelings. Never having either seen or been offered the chance of seeing a Rheumy myself, I don't know but I do worry about the number of people on this site who seem genuinely frightened of this strange group of people.

[jaycee444 in reply to borednow]

It’s strange isn’t it how the attitude of these people affects us. Personally my own Dr was more than happy to let me manage my own PMR but I did at one point have some GCA symptoms so was referred to a Rheumy so now its routine appointments. Don’t always see the same one which doesn’t help as I get conflicting advice. You are right - what is he going to do?? I certainly dont want to be on steroids a moment longer than I have to but I dont want a life of pain and misery either.

[Temoral in reply to jaycee444]

These rheumies appear to think we WANT to stay on steroids! Are they kidding....we would all like to be free, but we are trying to balance a quality of life....and would like their support and empathy. Too much to ask.....?

[PMRpro Ambassador in reply to Temoral]

All too often it seems. I am so lucky here - all my doctors are really keen on QOL.

[Sharitone in reply to jaycee444]

Maybe the rheumy won't mind? I was a bit worried about my appointment this morning, seeing as I'm still on 3.75mg when I was supposed to have reduced to 0, but he just said to get off it asap, and control the dose myself. He was even impressed that I could do 3.75! So all that anxiety for nothing!

[piglette]

7mg can be a bad point as it's about the time the adrenals have to start leaping into action again. So a double whammy with a possible flair and adrenals. It is a time to relax, rest and take things slowly.

[Jocelyn344]

Such good advice on finding the right dose for you, and only reduce by 0.5mg., using a tapering schedule

[cranberryt]

I will add that 7is is notoriously difficult to get over. It’s where your adrenals need to start kicking in. I suggest maybe trying .25 drop if you can and look at the dead slow taper you can find in this forum.

[PMRpro Ambassador in reply to cranberryt]

Just to add - all tapers are to be found in the FAQs

[Temoral in reply to cranberryt]

I am at 7 at the moment..and on the DSNS taper.... but .25 drop is a good idea...thanks 😉

[carnegieblue73]

Hi Jaycee, I have been taking my time reducing from 8mgs of prednisolone and after going through the same experience as you decided to go even slower at just 0.5 mgs every couple of months. It has taken me a year to drop to 2.5mgs without any flares. I have used the tapering methodology you can find on this site. PMR pro and everyone else are spot on with their Wonderful advice on this subject. Having had the disease since 2018 I no longer worry about what my Rheumatologist may say, but to her credit she is more than happy to let me choose how I manage my disease.Everyone is different and no one should be pressured to drop their dose by sheer numbers alone. Anxiety just makes matters worse. Good luck with your journey!

[jaycee444 in reply to carnegieblue73]

Thank you all so much for your help. I certainly would be less stressed if I wasn’t so concerned about what the doctors are going to say when I havent reached the target expected of me. It’s almost like feeling a naughty child again…….I need to man up!!!

[PMRCanada]

I was “stuck” at 9mg for almost two years! Tried to lower to 8.5 five times but each time would start to flare. Eventually I went on Methotrexate to lower further.

It is VERY frustrating. I feel for you. Hope you have success in the future.