Starting to feel more human

[Corella]

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?

[Jellyb]

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.

[Debbie48]

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

[A66eyroad]

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.   

[Katybarstool]

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