Korkycat123

[Korkycat123]

I'm on 7mg a day of prednisolone a day is it best to split them 5mgs in the morning 2 at night I've had a few flare ups last month is this is the cause.

[Hidden]

Hi korkycat123, 7mgs may not be enough pred if you are struggling with PMR symptoms. The pred doesn't work the same for everyone. It's can work for between 12 and 36 hours. You may be one who doesn't get 24hours cover so splitting the dose may work. So if you have tried splitting and no improvement across the day you may need a little more.

You are in that zone where it starts to get harder and maybe 8mg was enough but 7mg isn't. Split the difference at 7.5mg? I always had to try a 0.5mg drop when I got under 10mg and,sometimes, it took a couple of attempts at tapering before the lower dose stuck.

[Korkycat123 in reply to Hidden]

Thank you will have a go

[DorsetLady PMRGCAuk volunteer in reply to Korkycat123]

Plus try using a slow taper plan - this is just one example - healthunlocked.com/pmrgcauk...

But whatever method you try if you go below the level you actually need you will get issues.

[PMRpro Ambassador]

When you say "a few flare ups last month" what do you mean? A flare up is due to not being on enough pred - and possibly what you are talking about isn't flares but simply having done too much the day before. If you are on too low a dose the symptoms will return - but then get steadily worse rather than improve.

Splitting the dose is for when the antiinflammatory effect isn't lasting until the next dose is due - and that is something different. It would happen much the same most days rather than now and again.

[kulina]

I agree with PMRpro, is it a flare or not enough to last you until the next dose? I found it very hard to reduce from 7 mg. It took about 9 months to be able to reduce and I ALWAYS split my dose (4 mg in AM and 3 mg in PM) because I never had enough to last me until the next dose. Sometimes I had to take my morning dose at 3 AM. That worked really well because I found that if I took it at 7 AM I wouldn't feel its effects until 1 PM. You kind of have to play with the dose, the splitting and timing. Stress and anxiety can really cause pain and with the pandemic we all have some degree of stress. I have to see my elderly mother on Fridays and I get very stresses visiting her due to Covid-19. I'm afraid I will get her sick or get sick from her. So, I had some aches and pains during the week-end but I stretched and iced myself and kept the Pred dose the same. Today, Monday I feel better. So you have to take everything in consideration and experiment to see what works for you. Hope you feel better soon.

[Gumnut]

Hi Korkycat123 difficult times for us all. And sending everyone a big hug. I struggled to get below 7mg but I reducedmy doses far too quickly ans when I got to 2mg all my symptoms returned. Thanks to advice from here I did well back up to 5mg for a month and now reduced to 4mg for a month and so on. As far as I know its important to take the full dose at the same time everyday. But I'm no expert. Maybe increase to 8 then try the slow taper. I know one thing. You can't rush it. Hope things get better for you.

Keep safe xx

[granny-b]

Hi,

I was given a reduction plan (for GCA) by my consultant which I followed like a Saint! I take the whole days dose after breakfast, I have never split it.

I have gone from 50 to 1 since November 2018 with a 2 week hiccup when I had shingles.

It worked for me.

Have you had any direction from your doctor or consultant?

[Korkycat123]

yes been to the rheumatology told me to drop down 1mg per month managed to get to 5mg started to get the usual pain you get doctor told me to up my tablets I'm now at 7mg. I'm getting confused now as I trying to do as the doctors tell you what to do, then you end up in pain. So I'll just have to do what you all do and persevere. Thanks for answering my questions.

[PMRpro Ambassador in reply to Korkycat123]

The idea was to find the dose at which symptoms return - that is the sign the dose is now too low to manage the inflammation and that you need a bit more. Having identified the dose that is too low, you go back. You can't know where too low is without getting there.

[Korkycat123]

Hi it's been a wee while since I've gave you all an update ,feeling pretty good lately.Been tapering down to 3 tablets a day.Ive been following all your letters got a few good tips to keep me going.One thing has been bothering me,when I'm walking I find I have not got a good gait,and my back is sore ,but I feel my back is getting bent over.Dont know if this is part of getting older or it's my PMR,any suggestions

[PMRpro Ambassador in reply to Korkycat123]

It's possibly tight back muscles which happens with myofascial pain syndrome which is commom alongside PMR and the underlying cause is thought by some to actually be part of PMR. That is what causes my similar problems.

I found doing Pilates adapted for me helped a lot during the 5 years I had PMR without pred - many of the exercises are similar to those a good physio would use for us. I also find theraeutic massage helps.

Lots of people comment on the "PMR waddle". For some it is because they are at too low a dose so that is something to discuss with your doctor. Though what does "3 tablets" mean? I'd assume that is 3x5mg tablets - but that should be enough. Are you using 5mg tablets?

[Korkycat123 in reply to PMRpro]

Hi I've had a phone conversation with the Rheumy on Monday,I told her about my back problem,and I felt I was getting pushed over.I mentioned that it could be be myofascial.She told she hadn't heard of it . Anyway received a letter from the clinic,an appointment for Monday 31st.Iwas quite surprised let you know how I get on.Thank you

[PMRpro Ambassador in reply to Korkycat123]

One of the massive differences I have seen is that here in northern Italy every physio and doctor I have met has heard of myofascial inflammation and PMR - and that has been the case for years. Germany used to be good at backs too

[Korkycat123]

Thank you for replying to my letter,no I'm not on 5mg tablets It's 3,1mg tablets a day sorry about not making that plainer.Pilates sound good but I don't think that I will be able to do that for a while,as we're on lockdown.But I will do asap. So I'll just waddle on a while longer,but at least I have an idea what's wrong.

[PMRpro Ambassador in reply to Korkycat123]

If you are down to 3mg and stiff and having difficulty walking it is a pretty good sign that 3mg is too low a dose to manage the inflammation.

You are NOT reducing relentlessly to zero, you are tapering the dose to find the lowest dose that give the same result as the starting dose did. The initial dose of pred doesn't cure anything, it isn;t like antibiotics. PMR lasts a long time before burning out and going into remission if you are lucky and the pred is to allow you a better quality of life in the meantime. The idea is to find the lowest dose that is effective for YOU because there are so many variables. If you go past that dose then symptoms will reappear as the inflamamtion builds up again.

[Korkycat123]

Right I got it,so do you think I should up meds again,say up to 4mgs a day if I feel better stay there for a while,if not up again.

[PMRpro Ambassador in reply to Korkycat123]

What was the last dose where you weren't stiff?

[Korkycat123]

I think it was about 5,I've got a phone appointment with Rhuemy on 24th August,but all they want is for you too get down lower.So I'm glad I finally contacted you all to get some advice.

[Korkycat123]

Thank you for advice feeling better already since I upped my my pred by 1 mg will see how I get on.If it starts up again,I won't hesitate to go up another ml to 5.,let you know in a month or so how I get on,