Feel like i am being poisioned

[brave]

Hi all,well i have mentioned this before ,but things are worse than ever.Does anyone out there feel as if they are actually being poisioned,my glands kill ,my head bangs ,my stomache is agony ,everyday is getting worse ,im so fed up and very depressed ,i cant be a mum,a wife im struggling to work ,this is torture ,im quite scared as i have never actually felt this bad ,any advice out there?thankyou brave

[Davros]

The first time I became really ill with Lupus I thought it was over. It was just before my first daughters first birthday and Christmas. I was convinced I would not see her next ones. I was devastated.

The road has been rocky but my eldest turns 13 in December. Every month or so there is a new challenge and we take them on together, as a family now. Our biggest weapon is a good specialist and our own knowledge. Once you feel in control more I am confident you will be able to look back at these darker days and gather strength from how much more in positive you will feel.

Take care and vent on here

Xxx

[brave in reply to Davros]

Thats positive,thankyou,but how did you get ahead ,i dont know what a consultant can do for me ,my system cant tolerate meds as they make me even worse ,i just about manage painkillers,plaquenil nearly finished me off!Im extremly low ,it really is slow torture,im scared because my glands are getting worse and worse and have been up since febuary ,it really is like being poisioned,my hubby asked me last eve what does it feel like?????like having the worst hangover with glands like golfballs!with the added feeling of ten rounds with mike tyson ,think that covers it ,i pray that things get better ,i really cant imagine a life like this ,im no use to anyone ,thankyou for your positive feedback ,i wish i could come back with a positive response,keep well ,brave

[Hidden]

Brave - you may have to struggle to get this, as it tends to be a "last line of attack" rather than the go-to drug of choice - but after years of MTX which did made me feel as though I was being poisoned, I have got Cellcept (Mycophenolate mofetil) - and this is the best lupus drug I've used.

I have got some hair loss and appalling insomnia, but apart from this I feel way better on this drug than on MTX (I couldn't tolerate azathioprine because I hadn't got enough TPMT). I also now take a small dose of Hydroxychloroquine and have no issue with this - but it is the Mycophenolate that is helping most.

The bad thing is that I had to have kidney failure before they even considered it - but why not push for a change of drug? It can't make things worse if they are as bad as you say. You will get through - for your children. I'm just sorry things have to be so hard for you. Take care.

[brave in reply to Hidden]

thankyou

[Davros]

None of us would be human if we did not have times we are stuck on the negative.

Have to admit the reference to a hangover is why I don't do drunk any more - reminds me too much for the Lupus symptoms.

Best thing I can suggest is find something out of the lupus you can focus on. The disease is part of you and nothing you can do but put up with that, but finding something that defines you as well really helps. I concerntrate on my family and work. It is a simple thing but I find it stops me from getting too depressed with it all.

When that doesn't work I then go for the bubble bath, a glass of single malt, some very loud music and a damn good sob - works wonders

[brave in reply to Davros]

thankyou

[Jane-Martin]

Hi brave, I am so sorry you are in such distress. look at U-Tube 'Sweet Language of Life, the Glyconutrient STory'. Worth taking a look. I take Glyconutrients and it helps me.

[brave in reply to Jane-Martin]

thankypu

[brave in reply to Jane-Martin]

Jane martin....i just watched the sweet life of glyconutrients,thankyou .so interesting,im a great follower of nutrition ,another lesson ive learnt ,thankyou again ,brave.

[Jane-Martin]

You are very welcome. I had never heard of this before, was so ill, desperate and decided it was worth a try. It was!

[brave in reply to Jane-Martin]

Can i ask where you obtain these supplements please?i live in the channel isles.I too am desperate ,i dont tolerate meds very well at all ,so apart from painkillers ,i would love to find something that my body could absorb and benefit from,thanks again ,brave