30mg and not good!

[Lola62]

Hi . I went down from 40mg after a week to 30mg yesterday and this morning I'm in agony with my shoulder and stiffness. Do you think a drop of 10mg so quickly was too much. Now I don't know what to do. Please help? Lorraine.

[DorsetLady PMRGCAuk volunteer]

You seems to have 2 posts in same subject -so have copied comments -

I know you are following your Rheumy’s plan - but it’s a big drop.. 25% and that a lot..as it’s first day it may just be steroids withdrawal [SW] , and flatten out over the next few days, but that’s not certain

In some circumstances [and other illnesses] it’s achievable, but it’s always a bit of a risk with early days of PMR.

If you contact Rheumy, the advice will probably be ride it out and try paracetamol or similar for a few days .. that may work if it’s SW, but in future it would be more sensible to reduce by 5mg a time.

But you really do need to discuss with your Rheumy..

[SnazzyD]

I had to do 5mg at this level. 10mg too big and withdrawal was not nice.

[Lola62 in reply to SnazzyD]

Thank you SazzyD. I have taken another 10mg for today and see how it is later x

[Charlie1boy]

Hi,

This is what concerned me when I replied to your original post yesterday.

The replies you now have from DorsetLady and SnazzyD merely serve to confirm my thoughts.

Hope you manage to get it sorted.

[Lola62 in reply to Charlie1boy]

Thank you Charlie. I was just following my Rheumatologist's instructions, but now I know that's not going to work 😭

[Charlie1boy in reply to Lola62]

Understood. Sometimes the best made plans don’t work out as hoped though. PMR, assuming that is what you have, has a mind of its own.

[PMRpro Ambassador]

It was a change in dose of 25% - and you felt it straight away. That suggests that it is your body reacting to the massive change in dose, steroid withdrawal. If so, paracetamol may helo and it should improve over the next week or so. Top experts in tapering say not more than 10% of the current dose - for good reason.

[Lola62 in reply to PMRpro]

Si if I take 40 for a few more days and then drop to 35, do you think that would be ok?

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

You can but try… 😊

[PMRpro Ambassador in reply to Lola62]

Suck it and see!!! It is the only way to find out.

[Lola62 in reply to PMRpro]

I have written an email to my Rheumatologist to see what he advised. I am hoping he is on my side 😊

[Lola62]

Hi Dorset Lady. What would you do in the circumstances?

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

From reply above it seems you have taken 40mg today - is that correct? If so, then same tomorrow, and then try 35mg after that. But you do need to give it a few days on the lower dose to see if things are okay… if steroid withdrawal then it should settle after 3-4 days.

From then on, provided okay, down to 30mg. It’s a bit of a ‘try it and see’ scenerio, not ideal I know. .but as we have said a unusual plan.

Normally you would be on the initial dose for longer to get the built up inflammation under control.. and then that make the subsequent reductions more achievable.

[Lola62 in reply to DorsetLady]

Yes, I am thinking the same, it was just too much too soon. Thank you 😊

[piglette]

As the others say that is quite a drop. Usually it is recommended ten per cent drop maximum. When you first drop you can get steroid withdrawal symptoms for a couple of days or so. They should go away then. If the PMR is complaining that usually takes a week or so to happen. Then you should increase again to hit the PMR on the head if it happens.

[Lola62 in reply to piglette]

So, what are the withdrawal symptoms, how does it feel? Thank you 😊

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

See this -

healthunlocked.com/pmrgcauk...

[Lola62 in reply to DorsetLady]

That's really helpful, thank you 😊

[Chris_1236]

For what it's worth, my body throws an absolute fit each time I reduce by 0.5 mg. 😥

It eventually gets over it though.