A very important question

[Ronzy]

how do I know when dose is too low as I feel mine is now but we’re all desperate

To get down. At the moment on this dose Terrible simtoms come back by 8 pm and before

Ie. Pred head jelly legs v low energy poor breathing Start of swelling. Wish I understood more .

Dose lots of you feel like this.

🍀🍀🍀🍀👍👍🤷🏽‍♂️🤷🏽‍♂️

[SheffieldJane]

I thought you had enough for 30 a day at the moment. They don’t seem to be lasting your full waking hours. You could try splitting your dose to head off the evening symptoms? I made that work for a bit. A couple of tablets held back for later. It did work. This heatwave has made my legs feel terrible. I am back on my bed with a fan blowing. Roll on rain, enter arthritis. 🫠☹️🍀🍀🍀🍀

[Ronzy in reply to SheffieldJane]

I sounds like we can’t make a good one Between us My big big problem is can’t get my breath and so week. Not getting no better 🍀🍀🍀🍀🍀🍀🍀🌹🌹🌹🌹⚽️

[PMRpro Ambassador in reply to Ronzy]

Does your GP know how unwell you are Ronzy? What you are describing sounds very cardiac in origin and it needs checking out properly.

[Ronzy in reply to PMRpro]

Thanks Pro yes lots of test including heart scan a month ago no results yet ☹️Loads bloods 3 chest X-ray

And To cap it all I was in LGI EMERGENCY last Thursday 🤷‍♂️

With a racing and unstable heart beat

I was in until 3.0pm

Tests X-ray chest umpteen blood urin

Several cardiographs examination by

Doctors.

But strangest. thing (doesn't sound Real )

I was wired up on there matching showing about 90 to 120 ish can’t remember exactly. That was all day

Then doctors decided to do a old fashioned way Hans on nurse on other hand Results NORMAL

BUT ALSO GOT A GOOD SMART WATCH WITH SIMULAR RESULTS

AS THER MACHINE.

sounds like I’m making it up🥹

Then says you can go home now.

ILL CONTINUE AFTER TEA.

So to round it up hospital found nothing wrong with me

To cap it all I left my man bag with about £ 60 worth of equipment in got it back eventually 🤪

Small note*. Last time at doctors,she said can you lift your arms up above shore shoulders how is your legs 🤷🏽‍♂️😱

I spend ours resulting everything. Should I be getting swelling on a morning

Before medication on face neck sometime knees top of arm back ,very nigh on chest and always pinky red.

I could go on ,Oh I have a rummy young lady seams ok gave my 2 month supply of

Predisalone but no date of next appointment, but I have a contact to leave a message. Thanks

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🌹🌹🌹🌹🌹🌹🌹

[PMRpro Ambassador in reply to Ronzy]

Paroxysmal tachycardia comes and goes ... Have to say - glad I'm here where they take things a bit more seriously!!!

[Ronzy in reply to PMRpro]

I’m going to see doctor tomorrow What should I say is there a good article I could take shot and sweet to the point. I wrote all my symptoms down for the rummy.. What did she do. Put them to one side then starts asking questions 🤷🏽‍♂️ I said I’ve post memory it’s on the sheet 🌹🌹🌹🌹🌹🌹🌹

Thanks again for that your very astute knowledge.

If I mention internet she may tho a death one.

[PMRpro Ambassador in reply to Ronzy]

Did you take a crib sheet for yourself to be able to answer her questions? You need 2 copies!

[Ronzy in reply to PMRpro]

Al do sheet in morning am cream crackerd 🌹🌹🌹

[DorsetLady PMRGCAuk volunteer in reply to Ronzy]

Agree with PMRpro -you need to get this checked…

[SheffieldJane in reply to Ronzy]

You must see your doctor. This sounds serious, made worse by the muggy weather. 🍀

[Pixix]

You know what I’m going to say!! If 30mg is proving too low for you, I really think you need to see your doctor again, as you have been yo-yoing with pred dose for some time & the dose never seems to be enough for you! As SJ says, you did say you had enough tablets. Perhaps it’s not the PMR but something else????? I think 30mg is high for PMR, or are you now treating GCA? Sounds like you want to increase your dose…but that’s up to you, Ronzy…I think you should tell your doctor 30mg isn’t working…or you will run out of tablets! I’ve had shortness of breath throughout the extreme heat, I don’t think anybody had much energy during the heat, either! Not sure what you mean by ‘pred head’, sorry….hectic day ahead, must go, S x

[SheffieldJane in reply to Pixix]

We usually mean a feeling of confusion and impaired memory. A side effect of Prednisalone. Breathlessness an also be a side effect although ( sorry Ronzy) I think Ronzy has been diagnosed with cardiac issues if I remember rightly.

[Pixix in reply to SheffieldJane]

Yes, I agree…remember Ronzy being diagnosed with heart issues, & it concerns me that some of his issues may not be PMR related, but need to be addressed by his doctor or his consultant(s). But there are also some that could be pred related, too! I’ve been diagnosed with 11 different diseases now in 4 years, each one is correct, but it can make it hard to distinguish what causes which symptoms…& how to treat them, but a lot of my current problems are not caused by PMR!

[Ronzy in reply to Pixix]

Yep Also mine just hope she listens to me Bin at it all night looking things up

All leave check sweet until tomorrow

Eyes so bury

Thanks love 🌹🌹🌹🌹🌹

[Koalajane]

Ronny, please get checked out by a medical person

[Ronzy in reply to Koalajane]

Tomorrow or Wednesday

[Koalajane in reply to Ronzy]

Ass soon as possible

[piglette]

Some of your symptoms do seem that they may not be due to the PMR. Do try and explain to your doctor how ill you feel. it is very easy to say you feel better than you actually do.