Night agony.

[Rocketronzy]

My nights get worse.

Stiffness and pain. Every where.

Supposed to be osteoarthritis.

But I feel I still got a lot of PMR. 😬

Only been diagnosed fairly recently with osteoarthritis.

How are the rest of you with osteoarthritis

😳

Thanks

🌹🌹

[Hidden]

What parts of the body are the worse issues? Do OTC meds help it?

[Rocketronzy in reply to Hidden]

Tough one that. It’s all over in the night. Through the day various sum times knees hips and feet.

This really annoying. Got a letter from Rummi saying there is considerable pmr in my blood.

We will review pred. In a few Month. 😱

Ps. Last night my feet was worst they have ever been. Throbbing shooting pains tingling twitching

Hot. Painful. I hate going to doctors. I feel like a shallaton as I have nowt to show. Does my head in One gets the feeling they think I’m making it up. 😐

😳😢😤

Thanks

🌹🌹🌹

[Hidden]

Hi Rocketronzy

It’s really quite tough when you have two conditions running alongside each other.

What does of Pred are you on now for your PMR & have you had a formal diagnosis of OA? And have they suggested any Medication to help with the pain of OA?

Kind Regards

MrsN

PS l have OA in my knees confirmed by X-ray & in my shoulder’s but not confirmed as yet by a Medic! I also have the Rheumatoid Factor but not showing any signs of RA at this time, Thank Goodness!

[Rocketronzy in reply to Hidden]

One every other day. But far from happy. 😬

[HeronNS]

Have you found that anything besides pred helps relieve the pain and stiffness? The problem with OA is I don't think there's anything which safely treats it. Nsaids interfere with cartilage regeneration so should not be used for OA itself, although occasional doses for other pain, like headaches, should be okay.

Pred got rid of ALL my aches and pains, including osteoarthritis which I was diagnosed with at 40 but may have had longer. Am now coming to grips with the unhappy fact that as I taper off pred I cannot expect to continue feeling better than I did before PMR struck! PMR disabled me. There was one evening when I was on the floor doing my physio exercises as usual, and it took me half an hour to get up off the floor. And had to plan how to get out of bed. All the classic PMR disabilities although at the time I thought it was just OA getting worse. I don't have these any more, but I do ache, I'm stiff and it takes a moment for me to get going if I stand up from being seated for a while. But no trouble getting out of bed, no trouble getting up off the floor, although I confess to having trouble lowering myself into my new bathtub, although why it should be so difficult when the old one wasn't I don't know. It must have a much deeper interior.

[Rocketronzy in reply to HeronNS]

Thanks for sharing that pred seems to be the only thing that helps me at night but now they have me down to one every other day. 😢😳 that all they seem concerned with. Getting me off. I have been on prednisone for about 6yrs. To me it was a wonder drug. No problem whatsoever no moon no wt gain no diabetics nowt.

But there hell bent to get me off

No matter how I feel. 😬

I could scream .

Thanks

🌹🌹🌹

[HeronNS in reply to Rocketronzy]

This is when we all wish those medics could spend a week in our body. They'd sing a different tune then. My doctor is very happy with me at my low dose, was happy even when I was a bit higher. i am so very grateful, yet we should all have such a reasonable person looking after us.

[Rocketronzy in reply to HeronNS]

Good comment. 🧐🤣👍

[PMRpro Ambassador in reply to Rocketronzy]

That is crackers - the rheumy is saying there are still considerable signs of inflammation in your bloods but determined to get you off pred. A dose that is well below 5mg is nothing to worry about - my doc isn't over the moon about my pred dose but it works for both the PMR and the atrial fibrillation which they can't control any other way. But I'm on 15mg to do it!

[Rocketronzy in reply to PMRpro]

Have you been on prednisone 7yr or so now. My doctors says I am addicted 🧐

[PMRpro Ambassador in reply to Rocketronzy]

Me? Over 9 years Ronzy - you don't become addicted to pred, how ignorant of him. You may become dependent if your adrenal glands get lazy - but that isn't the end of the world nor is it addiction.

[Rocketronzy in reply to HeronNS]

What is NSAIDs 🤔😳.

[PMRpro Ambassador in reply to Rocketronzy]

Non-Steroidal Anti-Inflammatory Drugs - like ibuprofen, Naproxen and so on.

[Clare5 in reply to PMRpro]

My doctor gives me naproxen for my aches and for my OA in my knee, they seem to work. Should I not be on them then?

[PMRpro Ambassador in reply to Clare5]

You need to be VERY careful and probably on some form of stomach protection at the very least. Gastric bleeds are not funny, pred and naproxen can both cause gastric irritation on their own, in combo they are worse.

[Clare5 in reply to PMRpro]

On lansoprazole too

[PMRpro Ambassador in reply to Clare5]

That's OK

[HeronNS in reply to Rocketronzy]

What PMRpro said and, unfortunately, including aspirin, but not acetaminophen (paracetamol or tylenol).

[Rocketronzy in reply to HeronNS]

I’ll see how I am tonight I’ve had no pred today. Last night I had prednisone in morning and paracetamol at night.

But paracetamol makes me sweat

Like a donkey. 😳

Tonight I am not taking anything.

[Hidden]

I am interested by your lower legs and feet paining you. It seems to be my little obsession at the moment. As you know pred (and other drugs) can raise blood sugar. After a while there may be damage to the nerves and therefore blood flow to extremities. I have had neuropathy for years, although wasn't sure what actually condition the foot and calf pain came from.i have said elsewhere that seams on socks hurt and my shoes had be to bought 2 sizes bigger. Eventually after about 5 gp appointments we decided to try duloxetine. Sadly another drug and I won't pretend it has no side effect. But I can get shoes on without significant pain...I would estimate around 50% at the moment. It might be worth an investigation. At night my feet were on fire and went from bright red to purple. Don't know if this helps or hinders. 💪🌻

[Rocketronzy in reply to Hidden]

Thanks for that Poops.

Very interesting information.

Stange thing about my feet for as long as I can remember I inherited my dads cold feet. I even wore bed socks in summer 😱 but now in winter my feet are on fire in winter. No socks. 😳

🌹🌹

[Hidden in reply to Rocketronzy]

Sometimes in the summer my feet can be freely with winter socks and I have a fan running at my face and upper body. Then burning then purple and pain throughout. 🌻

[Rocketronzy in reply to Hidden]

O heck. Sorry.

All the best. 🌹🌹

[Hidden in reply to Rocketronzy]

Forgot I had put a bar of soap under my sheet by my feet. My restless legs not quite so frequent. Making no claim whatsoever but 15p bar of soap not doing any harm. 😂

[scats]

Have you tried taking your pred at night? I used to wake with painful legs between 2-4am. Taking coated pred in the evening releived this. I only have PMR. Hope this is helpful.

[Rocketronzy in reply to scats]

How long have you had it.

[scats in reply to Rocketronzy]

Had PMR about 31/2 years been taking pred for 3yrs. I managed 9mg for 2 months otherwise never below 10. Just had a flare, probably because of stress and raised to 13.5mg. The way I'm moving today I shall take 15 tonight! This is my third flare.

I am lucky to have at last found a doc who understands that this is a prolonged process and is willing to let me decide what I need as long as I keep him informed. He has just decided that I need to see rheumy as things aren't moving.

My brother has just come off pred after 71/2 years

[patriciawhite]

I have RA and OA too I am the same ,it takes an hour or so to unstiffen in the morning .I can't get off the floor or out of the bath without a struggle but I have a rotor cuff tear in my left arm which makes things harder too . That's on the waiting list for an op for new bits and pieces to be fitted . Hopefully soon .

[Rocketronzy in reply to patriciawhite]

It’s a devel. All the best.

[suzy1959]

I have OA in both hips and knees. (now had one hip replacement and one knee replacement) I have had a lot of pain with it and suspect that the Pred. hasn't helped much although that is hard to know as the OA came after. I did notice however that you say that it is the doctors wanting to get you off the Pred. asap, not you and I wondered if you are actually not on enough Pred.? What you describe at night could just as easily be PMR symptoms? If you are only on Pred. every other day (?1mg?) this may well not be enough. I know it's hard but you will need to find a doctor who will let you try a higher dose to see if that is the problem. Do they suspect that the PMR has gone? Why?

I have been on Pred. for 6 years , usually on 11mgs. and just had a post-operative flare - realised yesterday because I felt ill and had aching in pelvis, legs, upper back, etc. Already a bit better today for taking an extra 5mgs. yesterday. If the higher dose doesn't make any difference within 2 weeks, you can go straight back to your current dose.

[Rocketronzy in reply to suzy1959]

Thanks can’t understand there attitude 😳

All the best 🌹🌹

[Noosat]

Yes, I have osteoarthritis, but think I can distinguish most of the time as to whether pain comes from that or PMR. The OA is in my lower back from one side to other and feels as though it is in my skeleton. I find if I stand with good posture, abdominal muscles and buttock muscles pulled in the pain decreases. PMR pain is in my leg muscles, quite distinct, and no change in posture helps.

[Purplecrow]

I have PMR and osteoarthritis in knee and spine. Wretched miserable! I also have restless legs which devil me at night.

Three things I have discovered...A good multivitamin pack which includes magnesium plus good fish oil caps, gives me some relief. Also, an over the counter homeopathic tablet, called "leg cramp", and melatonin.

Sounds silly and simple, but two tabs of the "leg cramp" remedy, vitamins, and a melatonin tab gives me a night's sleep.

If you're interested, check your local health food store or pharmacy for the Leg cramp tablets.

Kind regards, Jerri

[Rocketronzy in reply to Purplecrow]

Thanks for that Jerry. I’ll give it a go

Hope there not over expensive. 😳😢

[Purplecrow]

"Leg cramp" tabs Not very costly, 60 tabs for $9.00 (estimate) i usually use 1 or 2.

Melatonin is $5 or $6 for bottle of 250. Take 1 or 2 if needed.

Prices are U.S.

Good luck, J

[Hidden in reply to Purplecrow]

I would love to have extra sleeping help but some research suggests....

"Melatonin may increase immune function and could interfere with certain immunosuppressive drugs"

It can also mess with insulin/diabetes meds and other meds for high blood pressure etc. It's so depressing when you start to look at which drug/vitamin/herbal remedy etc is "safe" to add to the witches brew that PMR/GCA and age bring with them🙄

[Purplecrow in reply to Hidden]

Hear your concerns, just sayin what works for me.

Regards, J

[PMRpro Ambassador in reply to Purplecrow]

Melatonin is prescription only in the UK.

[Hidden in reply to PMRpro]

That what I thought but this implies it's available!?!

biovea.net/uk/product_detai...

[PMRpro Ambassador in reply to Hidden]

Does doesn't it - though of course they may offer this assessment of need and prescription by the site which always seems a bit dodgy to me...

[Hidden in reply to PMRpro]

There are lots of dodgy ones. It seems to offer them in all sorts of varieties. No contraindication warnings that i could find on the website apart from the generic "speak to your physician"

[PMRpro Ambassador in reply to Hidden]

And there are contraindications and potential side effects. Of course - it may not be legal to buy even if they are offered ...

[OutdoorsyGal]

The active ingredient in tonic (as in gin & tonic) is said to help with cramping. Quinine.

[Hidden in reply to OutdoorsyGal]

I am not sure there is enough quinine in tonic water these days.🤣🤣🤣

I think in amounts they used to use for malaria it probably caused more problems than it cured.....but there's no reason for an excuse for a g 'n' t!!!

[OutdoorsyGal]

Lots of G & T!

I refill with T when the G is gone, to up my quinine.

[Hidden in reply to OutdoorsyGal]

health.harvard.edu/bone-and...

[OutdoorsyGal in reply to Hidden]

Don’t disillusion me, please!

[Hidden in reply to OutdoorsyGal]

😂😂😂 i keep a bar of soap in my bed to help cramps and restless legs?!

[Hidden in reply to Hidden]

"Before you tuck yourself into bed, slip a bar of soap under the covers. The unproven folk remedy might cure your nighttime woes, according to its loyal adherents at least. Snoozing with suds supposedly prevents nocturnal leg cramps, those painful muscle contractions waking you in the middle of the night.," 4 May 2017

Sleeping With a Bar of Soap - Nocturnal Leg Cramp Cure - Good ..

goodhousekeeping.com/health...

[HeronNS in reply to Hidden]

I prefer the good old hot water bottle which stops my legs from aching.

[Hidden in reply to HeronNS]

I tried it for my restless legs. It is not working tonight at all!

[HeronNS in reply to Hidden]

Has anyone mentioned magnesium? Epsom salts soak?

[Hidden in reply to HeronNS]

Tried hot, cold, salts/magnesium. Only thing is to shuffle and mive, find comfy position...shuffle....etc etc. Thanks.

[HeronNS in reply to Hidden]

It's a "pain" isn't it, both literally and figuratively.

[Hidden in reply to HeronNS]

Indeed it is. Its the fact that as soon as i lay down i know its going to be one of those nights. I swear i could light the house for a week with the electricity whizzing through my legs. I ended up last night with my main quilt rolled up and my legs over it with my 1 tog quilt on me. Took 2 hours to find that position. 🤣🤣🤣

[HeronNS in reply to Hidden]

I had a better night than you. Actually slept through. But so achy this morning I wonder if the usual 4 am trek to the loo is actually good for my muscles?

[Hidden in reply to HeronNS]

I suspect it is. I dont often have over 2hrs at once, tben its a bathroom trek or just a wander round. When i slept just over 4hrs all at once i took about 20 steps to ease stiffness off a bit.