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4th week on Plaquenil........still feeling hopeless


#1

This is my 4th attempt at taking plaquenil and today marks 4 weeks (longest stretch yet). I know it can take up to 6 months to feel full effect but I was hoping by being on it 4 weeks straight FINALLY that I would start to feel some effects. But I have felt nothing yet!!!

And it is really wearing on me physically & mentally. I am beyond exhausted daily. And it seems to be worse in the evenings. I deal with fatigue throughout the day but as the day wears on it gets unbearable. I am still in pain. I am just so tired of being tired!!

The toes on my right foot are numb & tingling a lot more. And sometimes my toes will burn. That hurts so bad. But it only happens in my right toes. Weird!! I have noticed so many changes in my body this year. I literally feel like I am falling apart.

Thanks for letting me vent!! This is just getting really old!

Hope everyone has a good evening!

Lisa


#2

As you mentioned, you already know Plaquenil takes time to build up in the system. I didn't feel anything until about 2 months. My concern is the other symptoms you are mentioning. SS can set off other things like neuropathy…have you mentioned the symptoms like that to your doc? It always helps to get things checked out.


#3

Hi,
I feel your frustration. I have been on Plaquenil a little longer then you and I don’t feel anything either.
My fatigue has been bad for for at least 3 years and iT doesn’t let up.
It sucks!


#4

Thanks so much for the replies!! I have mentioned my tingling toes to my Rheumy and he mentioned neuropathy but that's about it. But the funny thing is I was dx with SS in April this year but have been having tingling toes before I got the SS dx. Like AT LEAST a year before. I see my Rheumy on Sept 12 so I will bring it up again and hopefully it will be addressed this time!! I have other symptoms as well but I feel he just brushes them off. VERY frustrating!!!

I agree this fatigue is just getting to be too much!! It feels like at times it is NEVER going to end!!!

Hope everyone has a good day!!

Lisa


#5

Thanks for your comment. I am new to the group looking for support. My fatigue is prob the worst part for me right now. Just would like to get comments from others.


#6

Mgjg, I totally understand the fatigue. Mine used to be uncontrollablely bad and very scary. It’s always present but much better than it was, thankfully. Hang in there. You will find the right path for you.


#7

Learn to gauge yourself. Plan ahead and rest when you need. And please don’t be afraid or feel bad to say No sometimes. You have to take care of you.


#9

I take 200 mgs twice daily have since the beginning.


#10



EnjoyLife said:

Mgjg, I totally understand the fatigue. Mine used to be uncontrollablely bad and very scary. It's always present but much better than it was, thankfully. Hang in there. You will find the right path for you.

#11



EnjoyLife said:

Mgjg, I totally understand the fatigue. Mine used to be uncontrollablely bad and very scary. It's always present but much better than it was, thankfully. Hang in there. You will find the right path for you.
Thanks, I'm looking for any help and support I can get.

#12

I was on 200 twice a day for the first year and a half. For the last year i have been on 200 once a day and its maintaining. Doc wants to keep me as low as possible for as long as possible. I have the option to go back up if needed.


#13

I’ve been on Plaquenil for 6 weeks and it is finally working. It has helped my fatigue tremendously. Total of 300 mgs daily. My rheumatologist prescribed 400 but I’m feeling good with 300. I hope it starts to work for you soon!


#14

Thanks so much for your reply Corky!! I have now been on Plaquenil for about 10 weeks now and I can FINALLY report that I AM feeling effects from it!!! YAY!!! My pain level has decreased IMMENSELY!!! I still get stiff but that is going to happen!!

The fatigue is even better despite the problems I am having with my heart. I had a walking stress test Tuesday (9/27) and have a echo-cardiogram scheduled for Oct 14th. And I am wearing a 30 day heart monitor. I get to take it off the morning of Oct 14th. I will get all of my results on Oct 14th. I ABSOLUTELY hate waiting that long for results but it is what it is!!!

I am still taking 200 mgs twice daily (Plaquenil) and I am ALMOST certain I will be adding more med(s) after I find out what is going on with my heart.

Have a great evening!!
Lisa