Flares 😱😲: Wurst yet for me. Last night a treble... - PMRGCAuk

PMRGCAuk

20,124 members37,706 posts

Flares 😱😲

Rocketronzy profile image
23 Replies

Wurst yet for me. Last night a treble wammy for me usually just the once a night.

But last night first very early 2.30. And didn’t get to bead until 12.30. 😲

Stiffness in muscles and pain terrible.

Took what seamed ages to get myself out of

Bed.

After walking round and my 3 mg of prednisone I am usually fine ish.

But then woke me up one more with a repeat performance 😩

Then to cap it all muscles been sore all day

Which is a first for me

Usually all pain goes after I got Mobil.

So now I am worried.

Doctors this evening.

Says try 5mg come for blood test Monday

Then see me on Friday.

Wish I new of owt Else I could take to eas things. Took two paracetamol last night but did nowt for me. 😢

Let’s see how I go 😬

I’m more concerned than I have been for a long time.

Sorry to go on a bit when I know a lot of you good people are far worse than l.

All the best everyone.

🍀🍀🍀🍀🍀

Ronyz.

Written by
Rocketronzy profile image
Rocketronzy
To view profiles and participate in discussions please or .
Read more about...
23 Replies
SheffieldJane profile image
SheffieldJane

Hello ronzy It’s good to hear from you although the news is not good. I thought you’d joined the world of the well.

I wonder what’s brought this on? Do you have any idea? Have you been overdoing it or stressing over something?

You aren’t going on a bit, you are clearly worried. The doctor’s upped your dose and you are going to have your blood tested. Although the Pred will be keeping some of the inflammation down, so it might not tell your doctor much. It does sound like a flare with all the stiffness and pain and there’s only one thing to do with a flare. You may have to up your dose until the pain and stiffness settles. Let us know how you go. Hope it’s sorted really soon.

Rocketronzy profile image
Rocketronzy in reply to SheffieldJane

Thanks for your concern Jane.

I was wondering if having 3 Large sausages when eating out helped. 😬

I usually try to steer away from them.

All red meat for for that matter.

Love chicken.

I was almost fine last night.

Had 2mg at 12.30. Plus 1/4 of a amertripoline. Which I do find helps me sleep and relax.

But it does wall me up if I take it regularly. 😢

Think I’ll try 2 mg and 2 in morning.

Prednisone that is.

How are you doing these days Jane.

All the best to everyone.

🍀🍀🍀🍀🍀🍀

Ronzy.

SheffieldJane profile image
SheffieldJane in reply to Rocketronzy

It could be sausages. I am food sensitive too now.

I am stuck at 7 mgs ronzy bored with having no energy. I want to break free!!

I take Amitriptylin 10 mgs to help me get a good night’s sleep. What does wall up mean? I bet I’ve got it.

Rocketronzy profile image
Rocketronzy in reply to SheffieldJane

Well I must admit I feel well most of the time night are worst for me.

I think l seem to come down to suit them not because things are ok.

Then I have a flare too far. 🤨

Insight329 profile image
Insight329

Hi, Ronzy! I echo Sheffieldjane in that it’s nice to see you again but not so nice that you are struggling. You haven't been playing with lampshades, have you? Or having too much fun with hats? Let’s hope if it is a flare, it’s just a little one. But you are a bit of a pro in this having had PMR for awhile and being successful at getting to 3 mg. If you have to increase a bit, at least it will get rid of the pain and stiffness. And you will get back to 3mg sometime soon. Try not to worry as you know that won’t help. Hang out here with your friends — I’m sure there will be plenty of people that would like to say hi again to you

Patience47 profile image
Patience47

Sorry you are in such pain. We are all pulling for you. Try not to worry and let us know how things turn out Monday.

Best wishes,

Edward

PMRpro profile image
PMRproAmbassador

Never mind owt else - pred is your owt else. And that is such a low dose, even the 5mg, that it really isn't a problem.

There is some thought that the activity of the underlying cause of PMR "cycles", it goes up and down, especially I suspect as it is heading for burning out. If you get lower while it is in a quiet patch and then it wakes up again, this is what tends to happen, you need to go back a bit. It isn't the end of the world and you will get lower again later.

Jackoh profile image
Jackoh

Yes looks like a bit of a flare Ronzy and that you'll have to go up a bit. You'll get there !! Hope all goes well with GP and blood test. Let us know how you get on.

I'm so sorry to hear you're having a flare, or setback of some kind... that stinks! I will keep my fingers crossed that it is only a minor glitch in the matrix and you are back to your old self soon!

Rocketronzy profile image
Rocketronzy

Thanks guys & gals.

Sheilamac profile image
Sheilamac

Isn't 2.30am the time that the cytokines are released into the bloodstream? I think I'd have been upping my dose at that time. Hope you get pain free soon.x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sheilamac

It about 4ish, but we do recommend if you’re taking uncoated Pred to take around 2-2.30 so it gets in the system ready for the onslaught.

Rocketronzy profile image
Rocketronzy in reply to DorsetLady

What about coated. Is that quicker

BonnyQuine profile image
BonnyQuine in reply to Rocketronzy

Hello Ronzy. Long time no see.

No, coated takes a bit longer. But it seems 'gentler', and I prefer it. I take mine around midnight and it seems to work ok.

Hope your flare doesn't last too long.

Rocketronzy profile image
Rocketronzy in reply to BonnyQuine

All of it or just some of it.

BonnyQuine profile image
BonnyQuine in reply to Rocketronzy

I take all of it around midnight.

PMRpro profile image
PMRproAmbassador in reply to Rocketronzy

No, coated takes quite a bit longer.

Soraya_PMR profile image
Soraya_PMR

Sorry to hear you’re in pain.

Didn’t you say your docs were pushing you to reduce faster? Their fault! Had you stayed at 4mg you’d likely have been fine. They just don’t seem to understand that their gung-ho reductions result in higher doses, and pain for US!

Half or quarter reductions from now I would suggest.

Rocketronzy profile image
Rocketronzy in reply to Soraya_PMR

Thanks.

Yes they are very concerned that I’ve been on prednisone for 5years. 😲

But as I have said Side effect nill

Which I can’t say for lots of drugs

That is for me of course

How many on hear have been on over 5years.

PMRpro profile image
PMRproAmbassador in reply to Rocketronzy

I've been on pred for 8 1/2 years, Haven't self-destructed yet...

Rocketronzy profile image
Rocketronzy in reply to PMRpro

Wow it’s better than possibly alternative.

nuigini profile image
nuigini

Hi Ronzy. I've been on prednisone for 4 years and haven't made it lower than 10 mg due to a few flares. I started at 40 mg. Personally I'd be ecstatic to be down to 5 mg.

I'm sure you'll be hearing from others who have been on it longer than 5 years.

Hope you get some relief soon.

Rocketronzy profile image
Rocketronzy

Feeling better at 5. Early evening days tho.

No results back yet last night took 3 at 12 then another 2 when I was woken. Can’t remember time. 😱 had a better night.

Going to try 5 at 12 tonight. See how I go.

Not a big enough dose to interfere with

Sleep. I hope.

Thanks all

🍀🍀🍀🍀

O and a bonus actually got some tramadol out of her. 😊

I like this doctor she was asking the right

Questions.

You may also like...

Is it a flare or not?

having pain & some stiffness in both Hips & Legs (right worse usually). Seems different than...

Is this a flare?

and on advice from the forum took an extra 2 mg the night we landed (last Friday). For the past 48...

Flare?

have now also started to get pain in one thigh muscle and my hips are painful too. Do you think this

Flare

months very happily. I then started my usual DSNS to reach 3 mg. All went well until I actually...

Flare?

driving. However, I have, over the last week or so, developed aches and pains in the shoulder,...