Pulled down by pain

[spearce]

I don't know what to do. I went back to 20. mg of pred (at about 4am) 6 weeks ago and stayed there for 2 weeks. Things went quite well apart from rough afternoons.Then started slow taper to 19 over a month, and now doing the same towards 18, and have been splitting the dose 2\3 and 1\3 to try and cope with the afternoons, but today (am) I feel so terrible I dont know where to turn, with pain everywhere. Is it caused by splitting the dose? Should I have started with an even higher dose? Or have I just stirred things up by going on a (fairly relaxing) holiday. I realise the answer may be patience but I seem to have run out.

[stellafmdm]

Well spearce, I'm not one of the 'experts' but it sounds to me as if you have reduced too far, and/or too quickly. It is no use trying to reduce while you still have symptoms! If the symptoms don't go then rather increase a small amount until you have everything pain free and then stay there for a while before reducing again. If you don't wait until all pain is gone you are asking for trouble in the form of increased pain!

[PMRpro Ambassador]

While you say relaxing - I note you qualify it with "fairly" which immediately makes me suspicious! When, what? And the travel - suitcases? Walking? Stairs?

But while I hope it isn't - these sort of problems without a good reason must always make you suspicious of an increase in disease activity or that this may not be "just" PMR.

[DorsetLady PMRGCAuk volunteer]

There are varied opinions on splitting dose - but it shouldn't make you feel worse. The idea is to make the Pred last through 24hours if you find a single dose doesn't do that for you.

I would be more inclined to agree with PMRpro - in that you have overdone things - very easy when you are on holiday and enjoying yourself - but you are out of your normal routine - and sometimes that is just enough to tip the balance.

An increase to say 25mg for a week may solve the problem, and then drop back to 20mg before returning to your slow taper - but do make sure - as said - its not just PMR.

[spearce in reply to DorsetLady]

Thank you so much to you and everyone else. Trying a bigger dose e.g. of 25 makes total sense. It's just a bit scary that my GP would be horrified and he and the rheumie I have seen both think I should be down to 16. I'm seeing a different rheumie in 2 weeks (recommended here) so hope she will be OK. You have given me light at the end of a very long tunnell.

[DorsetLady PMRGCAuk volunteer in reply to spearce]

Your medics might think you should be down to 16mg, but unfortunately it’s your PMR that has the last word on what dose you actually need!

Hope things go well for you.

[spearce in reply to DorsetLady]

Sorry to bother you again but did you mean drop straight from 25 to 20 after a week, before slow taper?

Many many thanks

[DorsetLady PMRGCAuk volunteer in reply to spearce]

Yes, if the 25mg makes you feel better quickly it’s probably mopped up accumulated inflammation - and you should be able to drop back down okay.

If you don’t feel happy with that then do 22.5mg for a day or so, then 20mg. But stay at 20mg for a couple of weeks just to make sure before you start the taper.

[Robinsnest72]

I have split the dose for the last 9 months as the mornings were not good. Got down to 6mg but was sure not pain free at any time. My blood readings were slowly creeping up so I put it back up to 9mg and decided to try all at once in the mornings. I felt better within 4 days. Stayed at that dose for 7 days and have now dropped to 8mg. Still feel better than I have. Am going to stay there for a while till I feel inflammation has cleared. Maybe as the disease progresses and the inflammation becomes a bit less the single dose is working. My Rhemy will be Happy I am on the single dose but might not be impressed that I did the increase. He wrote the last RX for 4mg daily. What a dreamer he is! Never asks how you feel only goes by blood readings.

[PMRpro Ambassador]

You do have to bear in mind with a split dose that if it is barely improving things at the single dose level, splitting it may take those doses down to a level that simply isn't enough to deal with the morning level of inflammation in the first place.

[Christophene in reply to PMRpro]

Whose mornings are ever good? Even for those perfectly healthy.

[PMRpro Ambassador in reply to Christophene]

Mine. I use Lodotra/Rayos ...

[KellyInTexas in reply to PMRpro]

This might be a very good time to explain again about the cytokines shedding in a natural cycle about 4:00am. Could you elaborate again on this? A brief synopsis of cytokines/ mediator (s) is so helpful in understanding the need for the full dose , and early morning dose to get the ensuing Inflammatory after effects kept in check.

( I may ask about this very soon also re the lupus/ spectrum migraines- so please do it in a way you can copy paste to save yourself time!)

My question(s) will be solumedrol vs pred tablets And bringing on the tablets ( 5 mg) as I Bridge for a couple of days to hold me to next injections of solumedrol. ( usually 80 - 120 mg...IM)

My choice when I go in for injections- when symptoms return. I am only doing this for about 3 months until my team decide on a next plan to try to stop the Refractory and progressive clotting.

That’s why I’m trying to learn about the pred, and different types.

I learned here about the cytokines shedding at about 4:00am...

Quite an a- ha moment. The migraines hit at about 7:00am- 9:00am . Makes total sense now.

The vessels in brain swell, clot. The seizures are back. Hallucinations are back.

The solumedrol is keeping in check.

The clotting is systemic. DVT’s- superficial clotting as well. It’s the organ clotting that’s difficult.

I wish I could just stay on the prednisone forever.

[piglette]

You should not start to reduce until you feel OK at your current dose, otherwise you are asking for trouble.