Sick on Plaquenil

[needahammock]

Hello!

I've been on Plaquenil for 3 weeks now and I'm feeling pretty sick, I'm having a hard time at work, because I feel so sick. I have stopped the meds and I'm feeling much better, not sure if I want to continue at this point. I'm also taking Naturethroid for my thyroid. My energy is somewhat back, and I think is due mostly to the thyroid medication.

I'm not sure what to do at this point  .

Ingrid

[elliea]

Hi Ingrid-I had gi problems on it for several months.It did help the symptoms,though.Then, I stopped it for about 6 months-  SS symptoms got worse. I recently recently re-started but on a very slow routine(per my rheumy).I started just one pill every other day for 2 weeks. Now I am on 1 pill everyday. So far, no side effects. Keeping my fingers crossed for both of us.
Hugs,
Lesley

[Jellyb]

I am on only 100 mg every other day of the plaquenil. I can tolerate this but no more.

[Joe S.]

Check for side effects and drug interactions on the web.

[mshistory]

Hi Ingrid,

When you say sick, what were you experiencing? When I first started Plaquenil, my SjS symptoms seemed to get worse actually (more fatigue, joint pain, dry mouth, etc.) but after a few months, things are actually improving now. I have no idea if the Plaquenil temporarily made some issues worse, or if I was just getting worse and the Plaquenil hadn't kicked in yet, but after 3 months of 400 mg daily, I'm finally feeling improvement from the Plaquenil.

If you were experiencing nausea with it, were you taking it with food? I can't take most medicines unless it's with a meal or it will make me feel quite sick.

[gold55]

I'm getting totally freaked out about Plaquenil!  I know eventually it's going to have to become my friend but for now......ohhhh I'm just so immature for my age when it comes to medical problems!  Someone needs to slap me

[smallfry]

I have just started plaquenil still in my first week ,I have been taking it same time each day after meals so far fingers crossed no troubles.
Cheryl.

[irish]

I think that all of us seem to freak out over these drugs because of what we read and what people tell us. I have been on the plaquenil 11 days now and so far just some GI issues that aren't too bad and tolerable.

I only take 200 mgm a day and I take it with my noon meal. I only take this one pill at noon and figure that is good. That way I don't have other pills in my stomach at the same time. I also try to drink plenty of water when I take it.

All of us have to learn that when we need meds we need them. That is the way it is. The best thing we can do is to ask the docs to start at a lower dose so we can ease into them. I think that we all have sensitive GI tracts because of all the meds we take plus the autoimmune diseases tend to affect our GI tract to begin with. It is best if we can get these meds into us early.

I have been on this site about 7 years now and with all I have researched and all that people have posted about I have come to the conclusion that the aggressive early treatment is the best thing. It probably will keep more of you up and about and able to work. If you are younger that is very important.

Everything with this disease is about choice and if we can keep a cool head and not get emotional with our decisions we will be more able to keep our life in balance. We want quality of life that is for sure. Sometimes the only way to get that is to take the meds. I wish I had been diagnosed about 20 years earlier with both the sjogrens and the myasthenia but it is what it is. I have t make a lot of lemonade. Irish

[gold55]

thanks Irish...once again your comments are so reassuring and make loads of sense.  I truly don't know how you've handled the MG....my Mom has had it for ~9 years but actually it has stayed in remission for much longer periods of time than her RA!!!  She takes Mestinon (sp?) twice daily, has been on a maintenance daily dose of prednisone 7.5 mg and takes 11 methotrexate pills once a week.....I think the methotrex is for her RA but I know it helps her MG too...especially when she starts getting double vision!  She is 80 now and is stable.  When she was diagnosed with RA she was not given any infusions or aggressive treatment...I think it started in her 50's like me, she assumed it was old age arthritis and finally got diagnosed after her MG had surfaced but was already in a stage of some joint damage.  I don't know if it was too late (joint damage) or because she was 75 but they really didn't do much except prednisone, methotrex, cortisone shots here and there and a lot of pain pills.  I agree with you that early agressive treatment is probably the best for future quality of life.   

[Meld256]

Ingrid,

I hope the other's posts will help you with how to arrange taking your Plaquenil and things to do.  Always with food; otherwise it makes most of us nauseous.  You may want to speak with your doctor about slowing down the dose for a while, etc.  I wish you luck. No fun being sick at work, much less at home!

gold55,

Yes, Irish is our "voice of reason."    Irish, I can always trust you to give a little bit of "oh, come on, now."
I must admit that after thinking about Plaquenil and getting my doc to prescribe, I let the script sit for 2 weeks before I filled it!    I'd just had oral surgery and felt hesitate going through anything else right away.  (I was being a fraidy-cat)

Once I began with it, yes, I had a little stomach upset. Not badly, then I started taking it at bedtime after I ate something like a bowl of cereal.  Problem solved.  I also had an itchy head that drove me a little crazy for about 2-3 weeks, but I was feeling better overall already.  I made the decision that if my joints felt much better and I had more energy, I wouldn't mind scratching like a dog for the rest of my life!     But that subsided in a few weeks, too.   

I'm so glad I began with it.  After 5 months it has made a huge difference in how I feel.  I've kept a symptom journal with joint pain, fatigue, eye and mouth issues.   On a scale of 1-10 (ten being worst)  I had been about an average 6 a lot of days.  Now I put problems at about a 3, so that's a huge difference. and if it helps slow the progression, too, I say "whooty-hoo!" 

Please try not to be afraid to try something that may have a couple side effects, (and maybe not) which might give you a much better quality of life.

[annken]

i am not allowed take plaguenil, cannot remember why, whether its my eyes or my neuro probs, but i take Mepacrine, it is not used in Ireland but the Lupus Centre in UK prescribed it for me, i am doing ok on it very much so.
the only thing the docs there told me was that as soon as i start on it i would look as if i have a tan and people would start saying what a fantastic tan and dont you look well!
the other thing is the taste is dreadful and thats why most of the docs patients wont take it, well i dont find it dreadful. 

[needahammock]

Thanks so much for all your replies. Yes, most of the time I'm nauseous, and was taking it with food, plus I always had to have food in my stomach, otherwise I'll feel funny. I also, got headaches and I was dizzy, like an out-of-body experience. I'm not allowed to have food at my desk, so I have to get creative on that since I'm not a candy eater.

I'm thinking splitting the tablet in have and that will make it 100mg and take it once a day. I was taking 200mg (my rheumy said 400mg). I hope I can do this, though.

Are there any other meds for SS? Or perhaps, something more natural?

Ingrid