Help again please

[Margaret1951]

Well folks been on 12.5mg for week tomorrow, ( xtra 5mg) hmmm had 2 good days and that's it 😤

Got both today PMR and GCA and starting to feel deflated once again, who can blame me.

I ask myself why is my body acting up again ! Simple answer , it don't like me 😭

So painkillers once again which I should not have to keep taking !

Up at 3.30 this morning with my little Angel who has reverse sneezing ( on medication) was on the floor with her calming her down as it's like they are choking, went on for about 10mins until she stopped ( not her fault)

Weather horrible, in fact this all adds up to stress I reckon, so need to win the Lottery and go to a warm country.some hope.

Anyway should I go up to ( dare I say it ) 20mg 😳for a week , all ready starting to get round face with the extra 5mg 😡

Due for blood test end of this month, (Think I need a brain test see if that's still working!)

Actually I think my whole body needs testing to see if I am alive and not a figment of everyone's imagination, now that's a thought😱

Blimey I am getting a moaner again !!

Sorry xxx

[DorsetLady PMRGCAuk volunteer]

Hi Margaret,

Oh dear you're going through the mill a bit at the moment aren't you, sorry to hear that.

You said you had 2 good days on 12.mg, hope that didn't mean you did too much on the back of that? If you only had 2 good days, then either it's not enough, or you're not doing what you should be. Sounds like it's not enough, so you know the answer to that, don't you? Even though you don't want to.

Depending on how brave you feel, you could try 15mg and see if that works or bite the bullet and go to 20mg - any chance of speaking to GP or Rheumy on Monday for advice.

Sorry can't help really, but sometimes having a moan is enough to release the stress!

Know what you mean about the weather - I've been up and down to my washing line today like a fiddler's elbow! 🎻 Getting fed up now!

Take care.

[Margaret1951 in reply to DorsetLady]

Thank you DorsetLady x

I will go up another 2.5mg tomorrow so that will be 15mg 😱

I think you are correct in me taking that opportunity to do things, {{{{{sigh}}}}}

A moan sure easies the stress as I get it off my mind then, but feel awful moaning to you all.

Sun out - red hot, sun in - thunderstorms !

Please don't tempt fate with your washing 🤓 don't want you to fall over and damage hands else who is going to give us more advice !😇

See the stress is going now I can have a joke , YES YES YES

I take my preds in morning first thing with cup tea, do you think I am taking them wrong time ???

Please don't run in rain x

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Hi again,

Don't worry in the least about having a moan now and then - it's what keeps us all going!

Run? You must be joking!

Think your time for Pred is fine, some people do spilt their dose if it doesn't last all day, but that doesn't seem your problem. However, splitting is not recommended if you've got GCA.

Just think you're at a difficult dosebright now, so get yourself back on an even keel, and I'm sure in time to come you'll just look back on this as a blip. We all get them from time to time.

[Margaret1951 in reply to DorsetLady]

Thank you very much, been only once round football field at back of my house and walked slow with dogs but PMR did not like it.

To make myself feel better I just had a Chinese delivered so me and dogs made pigs out of ourselves 🐷 now am fatter still 🦃

Thank you again and will let you know how things are x

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Hi,

Sometimes these things have to be done - and hang the consequences! There will be days when you feel better and can then concentrate on weight - if you need to!

[Hidden in reply to Margaret1951]

you seemed to get some relief on 20mg a few weeks ago. I would be tempted to try that but not for just a week but until I felt symptoms well controlled..i always try to do 0.5mg reductions (13mg at moment) ...didnt use my own rule and dropped to 12mg this morning. my legs wouldn't get me up stairs. 3pm took 0.5mg and am feeling better. legs not griping as much.

I am always guided by the idea that what's the point in taking pred if it's not enough to control pain.

my dog hates me at moment...until I get biscuits out lol. she is one putting on weight...my guilt!! She was on steroids once and went from 12.7kg to 17kg. hope dog coughiccup better😊

[Margaret1951 in reply to Hidden]

Hi, I was doing so good on 7.5mg without any pain etc then for some reason had this big flare up ! Feel a failure as this is when I start in my house like mad and know I should not do it !

Been there,done it,got the badge as they say but still don't learn 😱

I hope you are feel better strange how preds work for a variety of ailments.

My chihuahua lost 2 kg as she was heavy girl and still needs to lose another kilo.

Roll on tomorrow see if I get better, but see my 97 Aunty so hope I don't get stressed again !

[Hidden in reply to Margaret1951]

i always limit myaelf to one "big" thing....which at moment means supermarket or dog round field. or two small things...putting washing in OR out and same with dishwasher. hoovering if it's that time of year lol..

Once saw t shirt and it had a woman with box of matches and a house burning in back ground.... punch line....she says " well that takes care of the housework. "

my current motto

[Margaret1951 in reply to Hidden]

😂

[Margaret1951 in reply to Hidden]

This is my problem I cannot sit still and never have been able to except in the evening, which I am now and got no pain.

BUT, my leg gets restless and I have to walk about, it drives me nuts !

Dishwasher ??? What's that lol I have to use my hands, fingers, and wrists and get them wet lol

[Hidden in reply to Margaret1951]

yes restless legs a nightmare. I am afraid reduced to just moving them in one spot.

pacing is hard. I have been doing it for 10 years and still have probs with it. on good days. almost inevitably overdo. that's why 1 big or two small targets a day.

The problem is bad days and the hard time I give myself when I am almost bed bound for a couple of days. Not feeling guilty and chastising myself has been a big lesson. still fight it. Only when I feel better do I realise not lazy....but ill.

[PMRpro Ambassador]

Um - REST!!!!!!!!!!!!!!

[Margaret1951 in reply to PMRpro]

Hi pmrpro,

I truly am trying my best to but finding it so hard to.

I will tomorrow all day as I need to get better again asap. X

[PMRpro Ambassador in reply to Margaret1951]

It's your choice - but unless you rest it will take far far longer to recover.

[Klah]

Overdoing it can become chronic...I can attest to that. I think you should find time to rest more, maybe just 20 minutes at a time. Bad weather makes it worse. Hope you feel better soon...others can answer the dosage question💕

[Margaret1951 in reply to Klah]

Hi Klah,

We had that thunderstorm yesterday and I felt really miserable lol

Today not bad as been hot here but now resting. 😇

X

[SheffieldJane]

Glad you are keeping your sense of humour Margaret. The wet weather seems to provoke a lot more pain. Let's hope we get an Indian summer. Being on the right dose of Pred will help your pain, unlike painkillers ( unless you have arthritis in the mix.) Blow the face for now! I was told at a wedding that I didn't look old enough to be anyone's grandma - thanks Pred - Botox and filler effect.

[Margaret1951 in reply to SheffieldJane]

Are we getting an Indian summer ???? Whoopie !! 😂😂😂

I have osteoporosis in most of my bones now the Dexa scan revealed because of preds Doc said, but so far just hips are worse but he told me I shall have to have a replacement one on my left hip first 😱 but will wait until I need it as don't like hospitals.

I never thought of the botex solution sure is cheaper 😂😂😂

[Jackoh]

Know how disappointing and frustrating it must have been for you to have got down to 7 and a half and now having to continually raise the pred. Have been in a similar situation and it is all so easy to question what did I do wrong? why did the flare happen? So many times it is just the nature of the beast: it has its own timetable and increases and decreases when it wants to. As we know we have to put this behind us and carry on- easier said than done. Then I've found we have to continue doing the things we worked on before; pacing, looking after ourselves, being careful with diet. I think for me when the failure occurs( I'll call it that but it's not a failure- it's often just circumstances) I've wanted to throw in the towel and initially mentally and emotionally give up. But I've found that I have to get back into gear, be patient and carry on which is probably where you are now. These things won't last forever and I do think I'm fortunate - this is treatable and although the time for recovery is longer than I thought there are still many positives to be noticed and celebrated.

Hope you'll soon get over this blip, find the pred level you need, rest and pace and move onwards and upwards, going with the flow! X Jackie

[Margaret1951 in reply to Jackoh]

Hi Jackie,

Started 15mg today and been to 97 Aunty for 3 hours, up and down in chair.

Felt stressed again and touch and go this afternoon, but Aunty does come first as she is like a skeleton bless her and tiny !!

I am pretty sure I had the flare up because of of feeling better so like an idiot of an Aries started doing things again.

Learnt my lesson now not to 😱

I would seriously be lost without this forum as we can talk, get told off lol, and have good advice.

Let's hope they can actually find a cure one day !! Now that would be nice lol

Margaret

[SheffieldJane in reply to Margaret1951]

You've got that one right Margaret, we all do it.