Spoke to rheumy nurse

suzygirl

Morning all, a very tired SG here. I am sure it is bedtime, and not morning!!! :shock:

My rheumy nurse called me back and I have to go back up to 5mg of pred to try and settle the flare. I am not to reduce the pred whilst not on a suitable DMARD :oops: She is going to try and get me started on another med before Xmas. :roll: ( We'll see, I know how busy they are)

So I am up to 5mg, but it isnt enough so may have to raise again, which is irritating and my own fault. Spent Saturday asleep, too weak to even lift my head, and when things get that bad, it is frightening, so am going to try and not let it carry on.

Interestingly, my hospital is the pCT with the most complaints about it in the whole country. So I am obviously not the only person getting inadequate care. Having said that, my rheumy nurse is fab. She is so efficient, I much prefer her to the rheumy!!!

Todays job is to try and stay awake!! Not good :oops: and cope with the pain, which is back with a vengeance, along with all the other joys a flare brings. Can't complain it is partly my own stubborn fault. :oops:

How is everyone else???

dreamdaisy

Hon, if you need to increase the pred then you need to increase the pred (just checking, yup, it's me, DD, saying that!) I know, I know, I too kick against it but I am more stuff than you (which does take up some of the slack) so in that way I am fortunate. What the hell, go to 7.5 if it helps: once you are properly sorted/diagnosed then that will be the time to begin the slow crawl down to zip, zilch, nada, rien. Until then use what is there to help. Rest up now, sleep if needed as it is often the best medicine. DD

barbara12

Hi Suzy
Wish I could help with advice, but I am glad you have a good rheumy...and I do hope she or he continue to look after you.
Wishing you well with the meds....and hope things improve for you very soon.

suzygirl

Thanks DD and Barbara. I am still awake at mo and have a friend popping in to see me later. I am very weak today and the stiffness is bad. New and old joints joining in the game, I don't want to play. Trying to rest and not panic about housework and meals for the family. Hate being this bad it makes you feel vulnerable, I dislike having to ask for :oops: help. :oops:

I am always worse at this time of year for some reason, you just don't get used to it though, do you?? :roll:

traluvie

Hi Suzy..

Sounds like a lot of us are walking zombies today so join the club..
Hope you manage to feel a bit better soon, it's a right pain in the butt i know, but we'll send you positive vibes and hugs luvie..
Take care..xx

ironic

Hi Suzy,
I hope you are enjoying the company of your friend and there is nothing wrong with good old beans on toast for the family tea...
I have a wonderful rheumy nurse and to be honest I also find her so much easier to talk to without feeling rushed if you know what I mean.
Have a good sleep if you need it and I do hope the nurse gets back to you very soon to start the new meds.

Lv, I x

stickywicket

Oh Suzygirl, don't beat yourself up about this. we all do stupid things for the best possible reasons. You will get off the pred and that's what matters. If it takes a little longer, so what? 5 mgs seems to be where everyone hits 'the wall'.

I hope tomorrow's a bit better for you. Just take it steady. The family will survive on take aways for a day or so.

suzygirl

Thanks guys, I need the support ot be honest. When my firend came, she made dinner for the family, which was so nice of her, as they get sick of the chippy!!!

Tomorrow is another day, so will try again then. Joints are so painful this evening, can't get comfy. Am relying on a glass of whiskey to relieve my pain and the ice to cool my hands!!

Bad SG :oops:

valval

stick with it i know it awfull when you are in pain you just do not know what to do with your self hope tomorrow better
when i was bad the chippy did get a lot of use do not worry about it so long as they get hot meal val

julie47

Hi SG

Just sending a big hug ((((((((((())))))))))) and hope your flare calms down soon

Juliepf x

skezier

hi Suzy,

hope tomorrow will be better for you and maybe the uping will help. i hope so cus the tiredness thing is horrible. mine is anemia as well as the flaring and its horrible to feel so knackered all the time.

tomorrow is another day and leaving Izzy a sachet and you a decent day draft. hugs and tea. Cris xx

suzygirl

Thanks, it was so nice to log on this morning and find your replies. Got some sleep last night, but the days of unbroken sleep are but a dream!!! Need that deep restorative sleep, never mind.

Going to try and potter today, will go mad if have to spend another day on the sofa.

Patience is not my strong point!!! :shock:

frogmorton

Hey Suzygirl

l am sorry you have been so rough :sad:

Glad though you got a bit of sleep at least last night and hope tomorrow is even better for you.

Nice friend helping you with some decent food too.

You take care

Love

Toni xx