Am I heading for a PMR flareup?

[Washingup]

After feeling very smug with myself for reducing my prednisolone down to 15mg since May 2022. Now in my 4th week since my last reduction and only had very mild symptoms in the mornings until the preds had kicked in for the day. My last blood test showed my inflammation had reduced down to nearly nothing, which I'm still waiting to speak to my GP about. Haven't been overdoing things just the usual 1mile daily walk, so why do my symptoms for the first time feel worse this morning? Wondering if it's a sign of a flareup. 🤔 I don't want this to escalate. Any thoughts from anyone. Thank goodness for this forum!!

[DorsetLady PMRGCAuk volunteer]

Sounds as if current dose is just on the cusp of being almost enough but not quite -as it has taken 4 weeks to give a reaction… i.e. took that long for inflammation to build up.

If it is too low a dose and you catch it quickly you may find that an extra mg or a return to previous dose calms things down again. Might be worth trying that for a few days.

No sure what dose you’re on, or how you are reducing -but a smaller drop and/or might be sensible.

If you tell us what you’ve done to date, we can give you better advice.

[Washingup in reply to DorsetLady]

Thank you for responding. I started on 6th May 2022 so not too long ago. The GP put me on 30mg to start for 5days which was fine. After GP dropped me to 20mg which I couldn't tolerate the next morning so I took an extra 5mg at teatime to see me through the next morning. Followed GP plan so after 7 days dropped to 15mg plus my extra 5mg at teatime. After 7days I then dropped to 20mg plus my extra 5mg at teatime. Waiting for appointment with GP to review if to keep me on 20mg indefinitely (his dosage not mine because he doesn't know I take the extra 5mg at teatime). Have always felt mild symptoms since initial drop but felt perhaps it's to be expected. Wondering if I was supposed to feel completely free of any symptoms before reducing.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

PMRpro has given good advice,so won’t repeat what’s been said -but fir your information you might like to read this link -will give you a better idea of what to expect. To date sounds as if your treatment hasn’t followed the usual guidelines which is why you may be floundering a little -

healthunlocked.com/pmrgcauk...

Hope the advice you’ve got helps you stabilise

[Washingup in reply to DorsetLady]

Thank you will take a look.

[piglette in reply to Washingup]

Do you mean you dropped to 10mg + 5mg at teatime on your last drop, it just looks like you have increased again from what you say or is it a typo?

[Washingup in reply to piglette]

I have been on 10mg in the morning and 5mg at teatime for a month now and been ok except for very mild symptoms. If I followed doctors instructions should be on 10mg mornings only. These symptoms have increased even though I haven't changed my dosage, I can't understand why.

[piglette in reply to Washingup]

Thanks, you had 20mg in your post above, it was just a typo! Symptoms often take a week or more to show after a reduction they do not happen immediately.

[Washingup in reply to piglette]

Thank you. I understand what you mean.

[Washingup in reply to piglette]

Yes sorry, after reading t was a typo on my behalf.

[PMRpro Ambassador]

What did you do the last few days - doesn;t have to be much, carrying something heavy, turning awkwardly can put strain on your back muscles and they protest? How's the weather?

Is that TO 15mg or FROM 15mg? What did you start at in May? How long were you on it?

[Washingup in reply to PMRpro]

Thank you for your response. I have detailed my reductions to DorsetLady, if you could read my reply there to save me repeating myself. I felt I was doing well up until this morning, and can't understand why I felt worse. My 10mg has kicked in this afternoon so feel well, I will see if my teatime dose of 5mg will be enough for tomorrow morning it had been up until today.

[PMRpro Ambassador in reply to Washingup]

You have reduced in very big steps by our standards - you would probably have been better on 25mg for a month with no change. It is a very strange approach and not one I have seen in any recommendations. The suggested starting dose if often 15mg - but then the patient is left there for at least a month. If that isn't enough to achieve 70% overall improvement quickly, then a higher dose should be tried, up to 25mg.

It doesn't help starting with a high dose for a short time - not really how it works, the accumulated inflammation needs to be cleared out properly and a moderately high dose for long works better. If you then drop to even a slightly lower dose than you need it accumulates again to a level where you get a return of symptoms. The pred cures nothing - you have a spring clean and then taper the dose carefully to find the lowest effective dose that manages the daily new batch of inflammation. Smaller steps, no more than 10% of the current dose is recommended by top experts to minimise both the chance of missing the dose you are looking for and the effects of changing the dose which some people can be very sensitive to.

How early in the morning are you taking the 10mg? The sooner it gets into the system after 4am the better - the less inflammation it must deal with so the quicker it works. I'm assuming you are taking plain white pred tablets?

[Washingup in reply to PMRpro]

Yes I am taking plain white preds. I have been taking my morning dosage between 8am and 8.30am sometimes a bit earlier when I have breakfast. I was a little bit later this morning more like 9am because of my sleep pattern which hasn't been very good lately. Maybe this has affected things. I feel I should have preds with a substantial meal in case of stomach problems, I am on Omeprazole to counteract this. Interesting what you say about 4am time but how can I take preds so early without any food to protect stomach unless I set my alarm clock and have breakfast at the crack of dawn 😂 oh dear, will see how I am the next few mornings and hope things settle down. Maybe if I stay on my current dose for much longer it will be ok, have now been on 10mg plus 5mg at teatime for 1 month.

[PMRpro Ambassador in reply to Washingup]

If you are on omeprazole it is less of a concern - and many people find that a few spoons of yoghurt to take the pred is enough. Theother option that might help would be to take that 5mg later so it carries over to next morning better.

[Washingup in reply to PMRpro]

Will try 5mg just before bedtime as you have suggested instead of teatime. Thank you.

[Dochaz in reply to PMRpro]

Would taking a 5 mg dose at bedtime not have a negative impact on sleep? I'm already struggling with insomnia, so am hesitant to take part of my daily dose in the evening. I'm on 25 mg for GCA.

[PMRpro Ambassador in reply to Dochaz]

Depends - doesn't affect some people at all or any more than taking a single dose in the morning does. But you only need to even think of doing it if your morning symptoms are a problem and that is mainly with PMR.

[Washingup in reply to Dochaz]

I hadn't thought of that, I'm already having sleeping problems. Going to try tonight and see what happens.

[Hosers2 in reply to Washingup]

When I first started, I was taking 15mg Pred. I found that taking 7.5 around 2:00am and the other 7.5 at 2:00pm worked best for me. The Pred didn’t keep me up at night because I had taken it early in the day. And the 2:00am Pred had time to kick in before facing the day. And I took the Pred with a small glass of milk.

Also. . .after a month on 15mg, I reduced only to 12.5mg for a month. Then 10mg for the next month. After that, I only reduced the Pred by 1mg per month.

Reduce slowly. Don’t get in a hurry. Plan on being on Pred at least a year, minimum.

[Washingup in reply to Hosers2]

Thank you for this information. Do you set your alarm clock then for your 2am dosage? I'm thinking I might sleep through this time of morning 🤔

[Hosers2 in reply to Washingup]

Yes. I set my alarm. (But I usually get up around then to use the bathroom. Bedtime at 10 - 10:30. Up at 6:30am. In the beginning month, I still has shoulder, wrist, and finger stiffness for about a half hour. It has been 2 years (on Fathers Day) now.

[Washingup in reply to PMRpro]

After what you said about build up of inflammation will also try and get breakfast at an earlier time in the mornings to get preds in my system and see what happens. Thank you for this information.

[Lyra42]

I’ve found that taking Pred at 5am works well for me. I just have half a banana and Omeprazole with it. Bathroom visit at the same time means I can sleep uninterrupted until 9 or later! 😀

[Washingup in reply to Lyra42]

Thank you. Will try your recommendation.

[SMH4CRNA]

I found taking a split dose has worked very well for me. I originally took 10mg in AM and 5mg at night. Now, I'm taking 10mg in AM and 2mg at night since I started tapering. I take the Omeprazole 1 hour prior to thr Prednisone on an empty stomach.

[Washingup in reply to SMH4CRNA]

Thank you for your input. Will keep in mind.

[PMR2011]

Others have given good advice. Would plan on being on Pred for 2-5 years for PMR. Slower is better and wouldn’t taper if you have more symptoms than when first put on Pred. In regards to the inflammatory markers, they are lower because you are on Pred, tho that does not mean the PMR has gone away, it just means the Pred is doing it’s job. Quite frequently symptoms will appear before markers go up. You are doing well to find out as much as you can about PMR as we all find we will be managing our conditions for some time and may need to advocate for ourselves.

[Washingup in reply to PMR2011]

Many thanks for your info. 😊