Despite halving my plaquenil dose, altering times of taking it, eating yoghurt at the same time etc, my horrible side effects came to a head yesterday when I was so bloated I couldnt even tolerate more than a sip of water and in 35 degree heat, that was no joke. There was no chance of me sipping 2 litres of water throughout the day, because I was so bloated each and every sip was agony.
I had almost except one day, an entire week of diarrhoea, crippling stomach cramps, itching - it was awful. Yesterday I got out of bed and my muscles had gotten so weak I could not walk, the room was spinning and I spent the whole day on the sofa, only getting up to go to the toilet - food was going right through me, even pasta/rice.
So then and there I decided that if I was going to stick with it, I would have to go to hospital as I couldnt even take fluids to even a fraction of the volume that is required for a healthy person, let alone someone with Sjogrens.
Hospital is not an option for me and the dizziness and muscle weakness was like nothing I had ever experienced so I decided no more plaquenil.
Still felt crap all last night and even had more diarrhoea this morning but slowly I am starting to feel a bit better, managed to go out today, came back feeling very weak - muscles still unusually weak for me, tummy slightly cramping but 70% better.
I really wanted it to work but no way on Gods earth will I ever put something so toxic in me again, I am looking at my thumb joints with the bony bits sticking out, my eyes are drier than ever but I will manage it. God knows how I will manage the weakness, I hope the muscle weakness that started with the plaquenil will eventually subside.
The sun makes me dizzy and sick and gives me irregular heartbeat - so I shall do what I can to avoid that, I am going to research into diet as well.
I wanted it to work but the side effects were scary :(
Have any of you stopped taking a medicine because it made you feel so bad?
Hi Corella,
Yes I have taken my dose of plauenil down to 100 mg every second day divided, because I just could not tolerate it. I saw a nutritionist thst specializes in auto immune diseases and the dietary reccomendations she has given me have really helped. It has taken time and learning to cook differently, but worth it. I still use restasis, but my goal is to be as drug free as I can be. It might not be forever, but I am sure trying.
Bless your heart . . . you really did give it your best effort. You can't ask for more than that. Hope you continue to feel better and better.
Take care,
Debbie
I'm so sorry you aren't able to take Plaquenil! I was so hoping that it would work a miracle for you the way it has for me. Sending positive thoughts your way. :-*
Corella
That must be such a big let down for you. Are you going to speak with your physician about where to go next?
Hugs
Kathyx