May Start plaquenil; Experiences?

[bob212]

Hi all,

Had my three month follow up with my rheumy today (was diagnosed in 1/09).  Main complaint is the intermittent fatigue with accompanied headache.  I am fortunate not to have the fatigue I've read about on some posts or the pain/dryness.  Dr. gave me a scrip for plaquenil; suggested trying it for a few months to see how I feel once it kicks in.  Read about possible side effects (eyes/hair loss etc.) but wondered what folks here thought.  I know from you all that Sjogrens affects us individually and we all respond differently to treatment.  But would appreciate any feedback.  P.S.: I've also been doing some alternative stuff: acupuncture, yoga, healthier diet.  I think they help but not to extent I'd like.

Bob

[dbab]

Hi Bob,

I have been on Plaquenil for almost 2 years (400 mg/day).  In the beginning I had some nausea but not so bad when I took the medicine with food.  I don't get nausea anymore from it but still make sure to take it with food.

It took about 2 months for it to kick in for me but it sure was a big difference.  The most noticable improvement was the fatigue, also the joint pain.  I'm now also on Prednisone and Methotrexate but my doc says that I should be on Plaquenil for life (unless I have serious effects on my eyes from it) because it will slow the progression of the disease, will help the fatigue and pain, and is about the safest medication for our disease.

It is definitely worth it in my opinion.  Hope it works well for you!

[DragonflyC]

I can't say that plaquenil has gotten my life back to normal, but it has helped.  I recommend anything that might slow down this disease.  I, too, started with mild symptoms. but now my dry eyes and fatigue have a serious impact on my day-to-day life. 

[jonnell]

My 4 year old just started 3 weeks ago severe stomach pain at first but shes ok now, make sure u take it with food.

[TerriJ]

I had severe stomach pain as well.  It would wake me up at night.  I really want to try it again.  Maybe if I could deal with the pain in my stomach it would eventually subside?

There are a lot of folks who have little if any side affects though.

Terri

[lynnmarie219]

Ive been taking plaquenil for over 4 years now....400mg/day which I take in two doses and with food. Ive not had any major side effects and feel it has helped me. I hope it helps you as well.......good luck!

[Scottietottie]

Hi 

I've been on Plaquenil for about 5 years now. Initially I was on a dose of 200mg daily and it didn't seem to do anything. The dose was increased to 400mg daily and after a few weeks I noticed a lessening in both fatigue and 'brain-fog'. I've had no side effects at all. Many of the side effects listed are pretty rare - but obviously they have to go on the literature.

Build up to a full dose in a tapered way. Maybe one pill every other day to begin with. As has been mentioned - take with food.

Good luck! It can be very helpful.

Take care - Scottie 

[kathyl]

Never had any side effects from plaquenil.  Only have to take 200mg now.  Helped with the fatigue and joint pain.  Not much help for dry eyes, mouth or neuropathy.  My doctor said it was the safest thing to take.  I see an ophthalmologist yearly.
KL

[Epson]

Hi Bob,

I have been taking plaquenil for over three years and have never had any problems at all. Plaquenil has help with joint pain and stiffness, but by no means a cure.  Plaguenil helps to to get out of bed and get dressed, without it, this would be a difficult and lengthy task.  I see my ophthalmologist every six months to check my eyes, so far no negative effects from Plaquenil.

[mim]

I  weaned off the pred about 3 weeks ago, after taking them for about 8 years,  and finally gave in to the fact that being off the pred is probably a good thing but i cant do this joint pain that I have got without something so started plaq yesterday.  We can wait and see together.

Mim xx

[Chickpea]

Hi sweetie Mim

Hope the adjustment to Plaquenil goes well - are you taking the tablets with food?  yogurt?

Hope you're having a restful half term. 

Take care - Chickpea

[bob212]

Thanks all for your feedback; I'm going to give it a try but will wait to start until after a planned out of town trip in a few weeks (nothing like nausea in a motel, right ; i'll let you know how the experience is!

[DonnaW321]

I tried Plaquenil last year....after about 2-3 weeks I broke out in terrible hives and had to discontinue it. I had never broken out in hives over anything in my whole life.  I did better for quite awhile, but now the Sjogren's is starting to flare up again so I will head back to the rheumatologist soon.

Donna

[ChmpgnLove]

I was on it for 2 days & had a severe reaction to it.  I felt like bugs were crawling under my skin, vomiting & diarrhea.  I also had the worst headache I have ever experienced.  My mom gave me a cold washcloth for my forehead & touching it to my head caused severe pain.  My rheumitologist said to quit taking the Plaquenil & start on Benedryl right away.  I did, but it still took over a week to get back to feeling normal.

[gurs]

I was on it for years with no problems. I didnt think it was working, until I stopped it..boy, was that a mistake. I started feeling worse than ever, and I started to have severe hair loss . I believe it helps keep things under control, even though we may not feel its doing anything.