Unusual pmr attack on system

[Linny3]

Not sure if it was pmr or not. I am slow tappering and have gone from 12 &1/2mg to ll mg of rayos in two months. Had some ups and downs with pain but no real flare. I have been on 11mg for one week. Yesterday, fri. my back was pretty achey .

After eating out at a local restaurant I could barley stand I was so stiff. Then I got sick to my stomach. Pain moved into my hips and thighs. I was getting cramps in my upper back. All in all a miserable time. When I got home I could barley stand. I took 2 mg of Rayos and went to bed for about 40 minutes. Does anyone think the rayos could work that fast? When I got up I felt so much better. Still hurt a lot but nothing like the pain that was earlier. I have had flares since having pmr for the past 23 months but nothing like this.

My husband had the exact same meal and is not sick. So, I don't think it was the food. Anyway, How could food make me so stiff.

It was all pretty dramatic, but today I feel sooooo much better.

Wondering if all those who have had flares if you have had anything like this.

This all makes me so crazy.

Thank you PMR

Have a wonderful Day

Lin

[PMRpro Ambassador]

"Does anyone think the rayos could work that fast?"

No. The outer coating has to break down before the active pred in the centre can be released. That is why it must be taken within 3 hours of food to create the right gastric conditions for the outer coating to break down - normally 4 hours. Even ordinary pred would be struggling to take effect in 40 mins, it has to be absorbed and reach a decent level in the blood and that usually takes at least an hour.

None of that sounds like a typical PMR - not saying it isn;t but it has to be questionable.

[Linny3 in reply to PMRpro]

Thanks for the response. I mis-spoke. I took 2 mg of reg. prednisone. I knew the rayos wouldn't help. Don't know why I said that. Pred. brain I guess.

Today I took 12mg. of reg. prednisone (up from 11) and the pain level is only about a 2 out of 10. So much better than yesterday.

[piglette]

As PMRPro says Rayos would not work that fast. Also how do you take 12.5mg of Rayos as you cannot cut it?

[Linny3 in reply to piglette]

I use the reg. prednisone for the 1/2 mg.

[piglette in reply to Linny3]

Ahh. If you mix Rayos and the ordinary pred, the ordinary pred will take much less time to actually work than Rayos. I was told that I should not mix the two.

[Linny3 in reply to piglette]

I don't know about mixing the two, can't find any info about it. I am still searching to find out. Hard to get time to talk with the dr.

Did the dr. tell you not to mix the two?

[PMRpro Ambassador in reply to Linny3]

Depends how you want it to work. If the 1/2mg is enough to make a difference on its own you could take it at a point you might feel you need a bit more to take you up to 24 hours. OTOH, if you need to have it to reinforce the main dose of Rayos you would take the Rayos before bed as instructed and the 1/2mg as soon as you can in the morning.

[piglette in reply to Linny3]

I think it was the supplier.

[SheffieldJane]

I have been literally sick with exhaustion, having over-done things and been amazingly revived by a simple rest. Perhaps this was part of it? Poor you! It is a deathly feeling.

[Rimmy in reply to SheffieldJane]

I'm pleased you are feeling better after a wee rest SJ - I understand all too well as do most of us how different we can feel if we pace ourselves. I just did 3 days being quite 'physical' - lots of walking and digging and weeding at our hobby farm and now on my 2nd day with feet up as I had 'had it' - I try to remind myself I am a 'battery' and I need to re-charge or even my brain won't work !

XX

[Jillbowles in reply to SheffieldJane]

I agree. I have had quite a few episodes of physical exhaustion that have come on rapidly with pain around my body. It's happened since I have been below 5mgs. I think it's the body shouting out that rest is required immediately and that I need to read up about pacing again! ! I often sleep for around 10 hrs after an episode like that then feel pretty much back to normal after that .

[SheffieldJane in reply to Jillbowles]

It happened to me yesterday after a long train journey to Edinburgh with a change. I was booked to go out for a meal but felt sick, exhausted and wanted to sleep. My kind husband rubbed my feet for 30 minutes and gave me a glass of fizz. This bought me just enough energy to walk down the road and eat a light meal. Then straight back to bed. In the midst of it, you think there is no chance of recovery. Reflexology helps!!!