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"How Can It Be A PMR FLARE?"

"How Can It Be A PMR FLARE?"

Perhaps it was inevitable; stress, change in routine, excitement, wine, wheat, trying to keep up with a one year old! ...but please, can someone help me understand, how can it possibly be a "PMR" flare, if I'm on 65mg of Prednisolone?

Last Tuesday I reduced from 70 to 65. I expected to feel like crap for a few days; but it has now lasted a week and has actually gotten progressively worse each day.

My legs feel like they weigh a ton. My arms feel like stiff, lead tubs, hanging lifelessly from rigid, unmoving shoulders. I have an achey band that runs across my back and upper chest/shoulder area. I am so exhausted and "out of it" I cant see straight. I have a wicked cramp in my right calf, that started several days ago and both hands have been cramping so badly, that the muscle on the outer side of each hand, collapses into the palm and my hand actually looks DEFORMED for several minutes!!!

This is how bad things really are... I actually "suggested" my daughter and grandson leave for Dover (their next planned stop) a day early, because I was struggling, just trying to keep up... I couldn't do it. They left today at 2:30. : (

How can this possibly be a PMR flare?

I'm on such a high dose of Pred for the GCA, shouldn't it be more enough to effectively manage the PMR?

What am I not understanding?

45 Replies
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Go get yourself a warm herbal tea, bundle up and watch some mindless tv. Let yourself fall asleep if you want to. You'll feel better tomorrow. Sounds to me like you are strung out too tight. High doses of pred are not known to assist in relaxation! Hugs.

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Sounds a bit like when I over did it in the early months. Just a thought on the cramps though, are you taking a magnesium supplement? You lose it more rapidly with Pred and I got cramps until I took it.

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I'll second the magnesium supplement..helps me..but still it sounds like a damn flair..often really bad days with me are followed by a few good ones..hope that's the case with you,,

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It doesn’t sound like a PMR flare, pred can cause cramps at high doses so that might be one explanation. Do you have any large vessel involvement ( aorta, subclavians etc )?

It sounds like you have overdone things a little!

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Hi mamici1

Just overdone things my dear! No manner how enjoyable it was at the time, it was too much of everything...to much eating, too much wine, too much excitement, too much trying to be grandma! At all at once...can’t be done, or at least only in very small bite size pieces.

Your aren’t the first, and you won’t be the last...you may have felt good before due to the Pred and the anticipation, but you have to remember you do have a serious underlying illness which is still alive and kicking! (Unlike yourself today🙀).

Give yourself plenty of TLC for the next few days....you will recover.....but learn from it!

To do it once is acceptable,

to do it twice is forgivable,

to do it three times is unforgivable 🤦🏻‍♀️

💕

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Treat yourself as you would if you had a nasty flu virus. Go to bed, get all cozy warm, have plenty of fluids and see if Paracetamol and Codeine helps at all. I imagine this is a combination of everything, you have a serious systemic disease, you are on a huge dose of powerful drugs, you’ve done too much and tried to be too much, you are decreasing steroids, you may be sickening for a virus and you are probably frightened into the bargain. So go to bed, maybe get the GP to do a home visit. Take Magnesium for the cramp and keep warm to the point of being too hot. My hands used to get stuck too, all that’s gone now. I think complete bed rest for a few days will help. If you think things are getting worse then consider an Ambulance. GCA is not to be trifled with. Let us know how you get on, we all care and lots of virtual hugs are coming your way. You’ve imploded a bit and you need complete rest.

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Wow mamici1! I am sorry you are hurting so much. Why does the PMR lie there waiting to cause trouble when stress and overdoing it crop up!

I hope you rest and pamper yourself and feel better soon. ❤️

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Mamici1 you are simply 'forked'

Don't beat yourself up, concentrate on getting the spoons back in order, and as you rest and relax you will forget the discomfort and luxuriate in those newly formed precious memories.

Will you be able to take the next few days very easily? 'Dressing gown' days, simple meals, Olympics, tablet time and lots of self pampering.

Sending 'chill out' vibes this time and of course very best wishes.

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:( I'm so sorry. Try a tablespoon of yellow mustard, or a large swig of dill pickle juice, for the cramps. Sounds crazy, but it works like magic...at least it did pre-pmr.

If you have access to isolations tanks, floating can work wonders for reducing stress (unless you hate the tanks!) Plus, you are floating on/in a magnesium bath! Feel better soon

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I love pickle juice! Had no idea it could help cramps, but it gives me an excuse to have a jar of it in my refrigerator, if someone asks. 😀

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It is pretty dang tasty!

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Testa Dura,

It is not crazy, athletes have and are drinking pickle juice for cramps and fatigue. When I was on 60mg of Pred for GCA I had pickles almost every day, I don't know why but it worked.

Enan

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Oh those consequences! I’m so sorry your disease is being so hard on you. Try not to worry/ruminate. Comfy clothes, calm music, naps, Olympics (great idea, Fren), color (if your fingers will allow), warm scented baths, things that will get your mind off of all of this but that won’t make you struggle to concentrate. Time to practice ‘slow’.

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Thinking of you Melissa - you did your very best and you will be able to do things the way you wish in the future - but for now (I know it is very frustrating) but just rest rest and more rest...

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mamici1

I'm so sorry I know you must be beyond frustrated. Perhaps you can Revel in all the wonderful time you spent with your family during their visit while you rest. I hope things improve quickly. Take good care.

Janet

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mamici1 ,

you've read it all above and from those better qualified than me.

Think of the good times with your daughter and grandson.

Cuddle up with something mindless, TV, a silly book, whatever you feel like.

Try and let all the bad stuff go and concentrate on the good stuff.

Remember we are here to listen and support you, looking forward to reading more from you when you are ready.

Big huggs

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So sorry you're hurting...we have all been there, done that. Take special care of yourself and know, this too shall pass.

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I know how you feel, its horrible. I think you've over done it a bit, just rest up and it will go away.

As for the cramps take Magnesium, it work for me. Had exactly the same as you cramps in legs, hands etc. Take it regularly now and it hasn't returned.

best of luck!

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Now you know you decision to look after gson as originally asked was the totally right one. The first three months after the euphoria of first couple of weeks were tough.

You need a lot of rest until your muscles recover a bit. It is depressing to cut he visit short but it's the right thing. Get that weight blanket round you. OH can shop etc. You need to regenerate.

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Hi there. I would say you need to see your doctor about this. Hopefully you will already have a follow up appointment booked in. Let them know you are unwell. Give the specialist a ring.

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Everyone has said everything Melissa. So sorry you feel so unwell.....this too will pass. Sending you virtual hugs. Xx

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So sorry you are feeling so bad Mamici1, Just listen to the wisdom and rest rest rest! I hope you'll be better soon.

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Oh Mellisa that sounds horrible. Hope it is just exhaustion and it passes quickly. Sending virtual hugs.

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"What am I not understanding?"

That while the pred relieves the inflammation - it does NOT stop the real illness that causes it and which is chugging along in the background attacking your body tissues. It's like having REAL flu, not just a bad cold. So while you do your part, rest, eat well, all that boring stuff, you may feel semi-human or even better. But push the gently swinging pendulum out of its arc and it will swing about all over the place.

Remember the gorilla? You poked it too hard...

healthunlocked.com/pmrgcauk...

Not sure if S'burys in the SE sells pickles of the right sort - but magnesium may well help a bit.

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I completely agree with what others have said about really taking it easy and one tip I can offer is to use a Magnesium sports spray and massage it into the skin. It is the fastest, most effective way to get Magnesium into your system. I bought some online via Amazon - 'Better You' Magnesium Oil Original Spray, 100 ml - and had it delivered and the cramps in my hands went away very quickly. I'm sure there must be other brands and creams too but someone recommended this one and it worked for me.

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Don't be too, too downhearted, mamici1. I know it feels like the end of everything but - it's NOT FOR EVER. I know I still moan about being knackered, 15 months later at 8>7.5, but when I stop and think about it, I am miles better than at the start. In the grand scheme of things, it could be a lot worse. Please do chill out and take all the good advice above.

Give the GCA another year or two . . . . trying to rush it seems to be counterproductive. But you'll be able to get together w your family long before that. Just do it in a way that doesn't put too much stress on you, next time.

When you feel up to it, PMRpro's link a couple of posts back, is extremely helpful. Again, TAKE IT EASY.

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Hope you are having a better day today. Sunshine here in the south helping me feel more human. Best thing In what's been an awful week, was a tiny stoat running across the road near to my house. Small things but sometimes they help me feel a bit brighter. You are on such a huge dose of pred compared with me. Can't imagine what that is like; helps me appreciate in the scheme if PMR, I am actually lucky.

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Hi - I wonder if you need some magnesium. Pred depletes minerals.

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Not sure what is happening, but I couldn't take magnesium tablets as they upset my stomache but I eat 1 or 2 bananas every day and have no problem now with cramp.

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If you take too much magnesium you will develop diarrhoea - think Epsom salts from granny's cupboard!

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I'm not saying you are the same as me but this has been my experience:

I used to suffer like you and always thought it was a flare but it wasn't it was withdrawal symptoms and which always took time to settle. (If symptoms go on too long go back to your doctor/rheumy just so they know what's happening.) I always let Rheumy know what was happening in case I was wrong, plus I'm lucky to have quick access to them. In times like you're experiencing I was always told to go back to the last dose I was okay on, get my bloods done (I always had blood forms to hand) and inform rheumy what was happening. Depending on the blood results was what they advised next. The symptoms happened every time I tried to reduce and the registrars to Prof d always put my pred dose back to 50mg until bloods came back. This happened three times and I felt so ill - until one day I got a phone call from prof d's secretary saying he wanted to see me. He told me my bloods were okay and that I was probably suffering withdrawal symptoms and gave me a very much slower reduction plan and told me to take paracetamol! He was right in my case. It also meant I had to rest completely when symptoms were raging, I took the paracetamol, which only deadened the pain but helped me get through it easier. Stronger pain killers did not work for me and made me feel sick. Even now on much lower doses the withdrawals happen but now I know my body I am able to cope better and be more relaxed about it which I think is key in this illness as stress doesn't help at all. I haven't been able to reduce for over a year and I'm only on 3mg daily - been told that I might not get lower (been diagnosed 4 years in March) but I haven't given up hope on that.

You are on high doses at the moment and that in itself is crucifying - until you get some relief you will not feel/be able to do much at all, I feel for you. Also you will be plain exhausted from your recent activities. So the mixture of the two just don't mix well. In either case take the advice of the many replies and rest, try paracetamol, it won't necessarily take the symptoms away totally but it will help to relax you. Hope you get some comfort soon.

Best wishes.

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I'm so sorry you are experiencing such troubles. I'll defer to the experts to advise you, but I must thank you very much for the pictures (each worth its 1000 words) that so well portray your situation.

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Agreed. Pictures great for context.

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Your pic says it all...'I've had it, I can't do it', BUT you CAN and WILL, Mamici1.With GCA and PMR,we ALL want to do what we've always taken for granted, BUT you have to LISTEN to your body.

What I have learnt in 12 years GCA,is PATIENCE, and,no, you won't be on Pred that long. I didn't know of this outstanding forum until 18 months ago.

Keep going, girl. Be strong.xx

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So sorry you’ve had this setback after the euphoria of seeing your family.It must be unbelievably frustrating. I do hope that a few days of relaxation and being kind to yourself get you back on track.

Fingers crossed....

Kathryn

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I love the picture! I know exactly how she feels! Yes as everyone says, rest, rest, rest........ and keep away everyone you don't want to see. You need to be selfish at the moment and only see those people who don't put you under pressure. Love yourself!! Xx

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Hi Lovie, so sorry u are crushed!! Sucks huh!!!

Drink Water!!

Of all the wonderful words of wisdom, it seems an important bit was not stressed.. so here goes, drink more water!! Try some gatorade- type drink to refresh your electrolytes and help with cramps... think athletes...!

Try for about 8-10 cups a day, or more. Your body is working hard and needs fluids to keep everything going.

Did I mention, Drink water!?!

You will get better! Promise!😘

Kind regards, Jerri

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Hmmmm? Think I should drink some water? 😏

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One with a bit of magnesium and stuff though...

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Did I mention Drink Water! Lots of it.! 💜💜

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Hmmmmm? I think, I'll try drinking more water... see if that helps!

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oh so sorry you feel so bad. I do know how you feel. I "crashed" last week - but it was coming - I felt foul and ended up in bed for two days and over the weekend. Had to take two days off work - I said I had a virus but I don't think it was a virus - my system seems to do that every so often - literally just crashes with pains all over me like a bad flu - without the stuffed nose bit. No-one would know what I mean in work - so easier to say I had a "virus". I really hope you feel better soon - please take loads of rest - its the only thing unfortunately.

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Hi powerwalk, Sorry, I missed this post when you posted it days ago... I'm sorry.

And thank you! I did rest and it "all" went away... eventually. I believe it's related to me tapering down (as many had said)... it seems to take my body several days to get used to the 5mg less. The problem is, by the time 5-6 days passes and I start feeling better, it's time to taper down again (on day 10) so I only get a couple good day until it starts al over again. : ( ... but this too shall pass!

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I'm Canadian and I hear you have been having awful weather. I have found that I can't get cold. Cold just makes everything worse it seems, so bundle up-wear bigger socks-turn ip the heat to tropical if you have to.Hugging you in my thoughts and hoping you are feeling better

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Thanks so much!

Yes, we have been having awful weather...

Thanks for the hugs!!!

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