[donna kosk]

Hi

i came of all meds about 2weeks ago and felt on top of the world but now i wished id not pain is so bad wolk up this morning and its just not going tired and a bit of blurd vision to it feels like ive got flu im going to go back to gp tomorrow to see what he advises me to do my body is full of pains nearly fainted to yesturday my bp the other day was a little on the low side at 97 over 63 so just to say if any1 is thinking about coming of meds do it with care.


take care all
donna :sad:

 

[greenhaggis]

Donna,

Oh my, did you come off all meds with the advice of specialist/and or GP?

You really should get some more help, hopefully the GP wil help and get your that urgent referal!

Take care and get some rest,
Love

 

[Katharine]

Hi Donna and (((((((hugs))))))))

I'm sorry you're feeling so bad now. I think we have all considered coming off meds at some time or another but those who have often realise, as you are now, that they really are necessary. I believe that people not taking medication or taking it irregularly is also quite a big problem for doctors trying to stabilise disease activity.

I hope that you can get that new rheumy appointment quickly and can start to really take care of yourself.

huge hugs :grouphug2: and wishing you many better days

Katharine

 

[lin]

Donna,was just rerading one of your old post,

hello people just a note ive come off all my meds and im feel better then ever i love it i feel like ive got my life back but would,nt advise any one else to do it
i was getting more problems taking

I thought it was you who came off them all, im sorry you had to go down that raod, i have stopped certain tabs before, thinkgin they not helping, believe me its not worth it, its only when they have gone out of your system, do you know about it

Cannot understand your gp letting you without telling you all the neg points of comming off them.

i really hope you get the help you need , are you dx? i forgot
now look after your self hugs Lin xxxxxx

 

[donna kosk]

i have sle rynards fibro ostio gastric reflux bad migrains ashma hay fever and maybe more but cant remember.
thanks to you lin lesley and katharine i,ll let you know what gp says tomorrow

take care
donna

 

[keebler]

(((Donna)))

I hope your GP helps you get a referral to a rhumey that knows lupus.

I am sorry that you found out the hard way that your pills were working.:hug:

Hope you get to feeling better soon.

Love,
Lyn

 

[donna kosk]

hi not good news


well i went to gp this morning but it wasnt the doc i normally see and basically told me to come to terms with what i have grrrrrrrrrrrrrrrrrrr.
on my last visit to rheumy he dropped my preds to 2.5 but sent a letter to my doc which said he was keeping me on 5mg.
so my gp said i need to go back on 5mg i told her that i was taking 2.5 before i stopped them(rheumy told me to take 2.5)gp told me that rheumy sent her a letter saying 5mg so i said "so im telling lies then is that what you are trying to say and is my husband telling lies to because he come with me"the gp was laughing most of the time and just kept saying i need to come to terms with my illness and theres no cure i really felt like hitting her im so angry.
i ended up crying and then she said to me i was depressed i told no im not depressed just angry at not being heard being called a liar and being mest about,i also told her i have had depression before very bad i know if im depressed and at this moment im not DEPRESSED that there is a differance between depression and being angry.

so i WONT be seeing her again at this rate there be no doctors i can go to soon im so so fed up just banging my head against a brick wall any way she told me to go back on all my tabs what do i have to do to be treated right


sorry it so long thanks for your support take care all

a sad donna

 

[lin]

Mmmmmmmmm she's very understanding hey? not!!
Donna are you still under a rheumy or not? think you need to be listend to,

yes we all know there is nothing that they can do for SLE but at least you should be treated right, ie meds, 6 months checks or 12 months checks from rheumy, depending how serious youe sle is
to how many times a year they see you,

but from what your saying they seem to be letting you get on with it, Saying there is nothing we can do, don't get them at all.

there is nothing they can do for me to get rid of this, but at least my new symptoms as they come get the right treatment,

And so should you, i think its time for change Donna, All the best, let us know how things go.

hugs Lin xxxxxxxxxxxx

 

[Sage Hen]

Hi Donna,

Don't be hard on yourself. I gave no meds a try, and found out real fast, just
how much I needed my "pills." It is a sad reality, that those of us must come to terms with. It is very difficult, I know.

I hope you feel better soon, and definelty find a dr, that is more understanding of you emotionally, and physically.

Get well soon. :stretcher:laster::rose3:

Love,
Sandy

 

[debatat]

((( Donna ))) sending you a hug as it sounds as though you are going through a hard time now. Have you restarted your meds? Maybe the gp was thinking you need to start 5mg pred to get control of your symptoms quicker than 2.5mg would. Just a thought. I hope that you feel better soon. A good relationship with your doc is so important.

Take care

Deb