Optimum time to take Pred

[Kindlreader]

Done the 3 weeks at 15 now started the 12.5 can feel bits of aches and discomfort but not on level it was before, simply neck shoulders. Question is there a "best" time to take the Pred? I take at between 7- 7.30am

[HeronNS]

That is actually the best time to take pred, along with some food of course, when starting out. You were probably told to drop by 2.5, but this is often difficult for people, especially if you have only been taking pred for three weeks. If you still have the aches after three days, or if they seem worse even before that, you could ask your doctor for 1 mg tablets so that you can taper by 1 mg at time. How long are you expected to stay at 12.5? It is very important not to taper too fast so that you end up flaring because it is often much harder to get control of the symptoms again. This is one instance of taking pred when it is not a good idea to reduce the dose too quickly. Pred hasn't cured PMR, nothing cures it. What you are attempting to do is to slowly find the lowest dose which still controls the symptoms as well as they were in the beginning. Eventually you will go into remission and be able to achieve zero, but this is not likely to take less than two years and more likely to be longer. Doctors want us to get to that low dose as fast as possible, but that generally is not good for the PMR patient. Slow and steady wins the race.

I suggest you try to get the 1 mg tablets anyway, even if you do manage to get through the 2.5 taper this time. Be sure not to taper further until your symptoms are gone again. It is advisable to taper by only 10% at time. 2.5 is a lot more than 10% of 15 mg! Many of us taper by even less than 1 mg when into single digits, which is possible if you have uncoated 1 mg tablets which can be cut in half. Coated tablets must never be cut, if this is what you currently have.

Patients have developed slow taper methods which can help to minimise any pred withdrawal symptoms, and also help a person find their lowest best dose where they may have to stay for some time. These are somewhere in the pinned FAQ post.

Good luck!

[Kindlreader in reply to HeronNS]

Thank You so much I am following the guidlines given by the GP (printed sheet) 3 weeks 15mg X 3 weeks 12.5 x 3 weeks then 6 weeks @ 10mg and going down in single digits after that each for 6 weeks. This is a massive leaning curve and have realised one size does not fit all people. I have the 1mg tablets on prescription so will order those and if I need them will use to increase up from the 12.5mg . I again thank you for your information and help. Having found the tapered redcution posts which I will read today this is the first day since diagnosis been able to do this life busy (another issue when you have this) . This site is agoldmine of information as well, I was guided to here by the DOctor who diagnosed me whose father had PMR. Also seeing my GP today and this appointment is I believe a follow up of orginal diagnosis (just over three weeks ago) so they are trying to keep on top of this which is appreciated.

[Gioielli5 in reply to Kindlreader]

My GP also put me on a fast tapering course. I ended up on 9mg in 15 weeks and then ‘flared up’ with severe tiredness and feeling pretty awful! Have now gone back to 15mg and will taper slowly as advised by Dorset Lady.

[DorsetLady PMRGCAuk volunteer in reply to Kindlreader]

That may be the tapering from the guidelines but as you say one size does not fit all…

But you also need to learn what is normal steroid withdrawal and what is a flare [too low a dose]. But I would be inclined to go back to 15mg for another week, and then reduce by 1mg [or if necessary cut your 2,5mg pill in half] .

See this general info post - which I did link in previous post, but please reread -

healthunlocked.com/pmrgcauk...

As for your comment -this is the first day since diagnosis been able to do this life busy (another issue when you have this) - you have a serious systemic illness and have to learn to pace yourself, just because you have been given medication doesn’t mean you are back to normal [also covered in link].

[Italybound62 in reply to HeronNS]

“What you are attempting to do is to slowly find the lowest dose which still controls the symptoms as well as they were in the beginning. Eventually you will go into remission and be able to achieve zero, but this is not likely to take less than two years and more likely to be longer.”

Agreed. But I keep wondering how we know when we are in remission.

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

You cannot be 100% certain until you have been off the Pred for a few months and no return of symptoms.

[PMRpro Ambassador in reply to Italybound62]

When you can reduce the pred to zero - and no symptoms for 6 months or so.

[Italybound62 in reply to PMRpro]

ahhhhh! thank you for answering!! this has been a long standing mystery for me.

[HeronNS in reply to PMRpro]

I've achieved five months! Still feel like I'm in a sort of holding pattern, but it's a completely different experience from the first time I attempted zero, but had to go back on pred after a few weeks.

[HeronNS in reply to Italybound62]

You will know. If you remain in doubt, you aren't.

[PMRpro Ambassador]

Just to add to DL's comment - the pred is not a free pass to go back to your normal daily activity. You have a new normal. you have a serious systemic autoimmune disorder and you have to adjust to that. It may mean a lot of things have to be filed or put on the back burner. PMR is not forgiving - try to do too much and it will bite back.

[NewPMR53]

I take at 5am 6 days per week and one day at 7.30am (due to taking alendronic acid on that day). The difference in how I feel is dramatic. The 5am dose enables me to start work at 9am. Later than that and I have a painful morning. The earlier time suits my body and controls the pain better for my waking hours.

[Kindlreader]

Well almost a week in and have stayed on the 12.5mg and odd twinge but no real symptoms to speak of I would say 97% pain free. Will stay on 12.5 for longer than the "guideline predicted" 3 weeks, thinking 4 weeks then reduce by 0.5mg next time down to 12mg then again hold for 4 weeks and do 11.5mg slowly but surely. Thanks for all the advice learning slowly, but I am learning.

[Bcol]

I like many others on the forum take mine at around 02:00-02:30, with some yogurt and a banana. This gets the Pred into your system in time to mop up the nasties (IL6's) when they come out to play at around 04:30ish,giving you a hopefully, pain or relatively, pain free start to the day. Has worked well for me over the years. I also work on a 0.5mg five week DL taper, but even on that I don't start the next taper if I don't think all is well.