7.5mg might not be enough : It's almost 4 weeks... - PMRGCAuk

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7.5mg might not be enough

IdasMum profile image
19 Replies

It's almost 4 weeks since I dropped to 7.5 x 7 from 7.5 x 4.

I posted a few weeks back about aches and pains and can't find the post.

I am more and more thinking my pains are PMR. Yesterday and today I am not keeping on top of it and over last 10 days have taken the last of my codeine stash x once per day. They ran out on Friday and I emailed my Dr for another box to tide me over til my osteo appt on Thursday.

Planning on increasing my steroid dose but wondering about how much and how often? A week at 8mg per day maybe and then head back slowly. My CRP was raised by 2 points when tested last week.

Bloody annoying :(

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IdasMum profile image
IdasMum
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19 Replies
HeronNS profile image
HeronNS

Sorry, maybe I'm being thick, but I don't understand your dosage.

IdasMum profile image
IdasMum

Sorry. 7.5 mgs per day x 7 days. previously was 7.5mg x 4 days and 3 days at 8mg.

I haven't expressed this well :D

I presume you mean you are tapering down and now on old dose 1 day, new dose 4 or is it the opposite? If you are flaring then yes, you should probably stop the taper and go to a higher daily dose. Do you take codeine daily usually because any aches and pains of withdrawal can last at least a week. If you think now it is pmr then if Dr allows it raise the dose. I flared at 6mg dud 3 to 5 days at 10mg then went to 7mg where I still am. I hope this is clear, clarity depending if I was right about the taper! 🌻

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Do you mean this

healthunlocked.com/pmrgcauk...

Or this

healthunlocked.com/pmrgcauk...

If you CRP has risen then could we be a flare - but a one-off test isn’t not conclusive.

Like HeronNS don’t quite understand your dose. Do you mean you are on 7,5mg every day whereas previous you were on 7,5mg four days a week, rest 8mg?

Think 8mg is probably your level at the moment, but it might take a week of slightly higher to get back under control

IdasMum profile image
IdasMum in reply toDorsetLady

Not sure I can express it any other way. I have been at 7.5 per day for almost 4 weeks.

Before that I was on 7.5 per every other day and decided to jump to every day as i was feeling well. I don't feel unwell now. No fatigue and energy levels pretty good.

Just achy and pain. Making me cry now and that's unusual....and the pain is not excruciating just unrelenting and i am feeling sorry for myself.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDorsetLady

Go back up a bit then either to a mix of 7.5mg/8mg or even 8mg, and get back to feeling better.

Plus don’t forget your adrenals are coming into the mix as well - so even more to cope with - and the weather is colder/wetter - none of which helps!

IdasMum profile image
IdasMum

I don't normally take codeine but have been for last week/10 days as I had some old stock.

Was taking one tablet (it's Dafalgan+Codeine) before bed.

I should be able to raise my dose as I am the one controlling it. I also have a stash of 1mg steroids so can keep at 8mg for a while. Might take 10mg tomorrow and then 8mg for a while.

:(

Cross-stitcher profile image
Cross-stitcher

I, too, am finding the slow taper from 7.5 to 7.0 a bit problematic. At 7.5 daily I felt well with very little fatigue. Now on 5 days 7.0 and 2 days 7.5 per week, some aches and pains are returning, and I'm not sleeping well. I don't think the rotten November weather we are having in Somerset is helping - getting any sort of daily walk in the fresh air is a wet affair! I have also (as of 2 weeks ago) had Metformin added to my mix of meds - I had managed my type 2 diabetes by diet for 5 years, but my blood sugars have suddenly rocketed, so maybe my body is having to get used to that change as well. My husband is telling me to go back to 7.5 every day, or even 8, until I have adjusted to the Metformin.

PMRpro profile image
PMRproAmbassador in reply toCross-stitcher

I agree with the man!!!! Never change 2 things at the same time!

in reply toCross-stitcher

And metformin should steady things up once you get back to right dose of pred.

Cross-stitcher profile image
Cross-stitcher in reply to

Thanks Pops and PMRpro. I hadn't heard that Metformin could actually be helpful when combined with Pred. I'll go back to 7.5 daily for a couple of weeks at least.

in reply toCross-stitcher

The idea is it helps with inflammation and reduces glucose spikes and insulin resistance in simple terms.

Cross-stitcher profile image
Cross-stitcher in reply to

My GP wants another HbA1c test in 3 months - they won't do it more often than that. After several years of keeping my level to under 50, mainly through diet and without Metformin or other meds, it has suddenly jumped to 72 during the 7 months I have been on Pred for PMR. Obviously, I have informed my optician although, so far, my annual diabetic eye-screening has shown no abnormalities. MY BMI is only 24 so not overweight.

in reply toCross-stitcher

There's not much point doing an hba1c any more often I don't think. I think of my daily tests as photographs and the hba1c as a video or film of the ups and downs that end in a score. Not very technical!

PMRpro profile image
PMRproAmbassador in reply toCross-stitcher

Hba1c is a reflection of the BS levels over the previous 3 months - doing it more often might show it tracking lower if you are being successful at reducing the BS with diet but it is a rolling value so GPs won't do it often. Silly really but hey ho - they hold the purse strings ...

IdasMum profile image
IdasMum

Sounds horrible Cross-stitcher and if I had fatigue in the mix I'd be more inclined to think I'd dropped too low. I found adding Metformin to the mix helpful. It seemed to make a big difference to my CRP level. Seems like you need to up your mg a little for a while. Hope you begin to feel better.

Meanwhile I have woken up with less pain and am more aware that the pain is from my left shoulder, the one I landed heavily on (I can only land heavily at my size!) a few weeks back. I think I had wrenched it a bit the night before in bed and therefore yesterday's pain was more referred pain from there. I haven't upped my mg's of Pred and am guarding my shoulder a bit today (not ideal as I don't want Frozen shoulder).

PMRpro profile image
PMRproAmbassador in reply toIdasMum

If codeine helped I'd suspect PMR wasn't the culprit. Don't know what though!

IdasMum profile image
IdasMum in reply toPMRpro

My shoulder from falling.

My prescription for an extra box of the stronger stuff has arrived by email. Off to collect...........byeeeeeeeeeee.

in reply toIdasMum

Hope it helps. I had 24 with half dose tramadol and it's not pleasant.

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