Went to new rheumatologist today, rethinking Plaquenil

I was just diagnosed last July and have been taking 200mg of Plaquenil once daily. I'm lucky to have pretty mild Sjogren's symptoms - mostly dry mouth with fatigue from time to time. The good news with the drug is that I haven't had any noticeable side effects. The (maybe) bad news is that I haven't really noticed any improvements. Actually, in the last month or two, my eyes have been feeling noticeably drier when I wake up in the morning.

Last October I moved from San Antonio to Houston, and today, I finally saw a new rheumatologist. We talked about plaquenil, and she said that it's my choice whether or not I want to stay on it. With my symptoms, she doesn't know it'll make a difference. And from what I've read (here on the site included), it seems to help more with joint pain, which I'm not experiencing.

I did mention that my former rheumatologist said plaquenil could help with sun sensitivity, and I have noticed that I get pretty flush with any prolonged sun exposure, even though I'm diligent about wearing sunscreen. My rheumatologist confirmed that it might help with sun sensitivity.

I kind of like the idea of not having to take this drug every day, but maybe it is helping? Hard to tell. My doctor also said that I could increase my dosage, since it's pretty low right now. Has anyone experienced similar results?

Plaquenil can take 6-12 months before full benefit is realized.

As far as plaquenil helping sun sensitivity, that is the first I have heard of that. On the contrary, increased sun sensitivity in some people is a possible reaction. source: pdrhealth, drugs.com, etc.

I didn't think plaquenil was helping either after a few months on it until I had to skip it for a surgical procedure (due to having to take it with food, yet couldn't eat that day due to surgery late afternoon). That's when I noticed it actually had been working.

That was my first DMARDs, which I’m no longer on. I took it primarily for psoriatic arthritis. One thing I know for. U self and for others is that it may also work really well for fatigue. Remember that you need to have your eyes monitored when taking plaquenil. I took it for almost six years, and my eye doctor was happy to see me stop it. The longer you’re on it, the greater the risk of retinal toxicity.

Have you ever wondered why you aren't experiencing the joint pain/ progression of symptoms? That is also one of the benefits of a functioning DMARD. 200mg IS a pretty low dose. My personal thoughts is not fix what isn't broke. a vacation may let you know. It seems most folks have no trouble restarting the med although its best to taper off and restart slowly. There are some who wish they never stopped

I take 200mg twice a day and have for years. I had to stop it for 9 month because of another issue when we stopped it my doctor told me this is one of the meds you don't know is working till you stop it. He was right I was glad to restart it.

It usually causes sun sensetivity. Everyone is different so you just never know. Keep us posted.

I took out for several years and quit. Started complaining to my Rheumatologist about joint pain. She explained that out does help that and after starting out back, I agree. I would not take it if I had no joint pain. It makes me shaky, loss of appetite; and hard to eat. I take prednisone daily and have for years, so am always trying to keep weight down, but while taking this I do get weak from not eating much.
The fact is all mess have side effects, and out is a

and it is a personal decision to weigh the benefits against the side effects. Good luck!

I was diagnosed by a rheumatologist in October, and he put me on Plaquenil 200mg twice daily. Before that, I was getting a lot of symptoms and I was getting worse fast. The fatigue was horrible. It was debilitating and completely ruined my life. At best, I could only go out of the house for 30 minutes or so and then I would have to come back home and lay down. I was getting really bad headaches all the time too, and I would space out and even my speech was getting slurred. I started getting dry eyes and dry mouth too, but those were the very last symptoms. I was already in really bad shape long before that happened. Plaquenil was a huge help. It took a little while, but I noticed a difference much faster than I expected. It seemed like in about 2-3 weeks or so, I started to have a little more energy. I was able to stay up longer and leave the house for longer times, a little each day. I didn't have to take as many naps. Then my concentration started getting better and I wasn't spacing out as much.

Now, I can say with absolute certainty that Plaquenil is helping me. It literally saved my life. I'm still not "normal" and there are things it hasn't worked on. It doesn't help with light sensitivity, and I was getting this weird jerking and twitching in different parts of my body before I started taking it, and I'm still getting that. But it helped enormously with fatigue and joint pain, and "brain fog." I do still get tired easily sometimes, and I have to be careful not to overdo it, but I am much better than I was before. I have more energy. At least now I can have a life, and do things that would have been completely impossible before I started taking it.

I've been on Plaquenil twice a day for almost a year, so that would be double the dose you are on. It helps immensely with the fatigue which was crushing. The joint pain has been leveled off at the point it was at and isn't continuing to get worse. YAY. And, the flair ups are noticeably shorter and less intense. I wonder sometimes if its not doing much until I remember how bad it was before I started. And like TJ said, it sure isn't getting worse while other things have (like neuropathy) so its doing the job its meant to. It is correct that you need to see your eye doc for monitoring but the occurrence of toxicity is pretty low, thankfully. That one is a little scary. Oh, and I was told that it can cause photosensitivity, not help so you may want to double check that. I'm glad you found a doc that you like, though. That's half the battle. Please keep us posted on how it goes.

Hey I’ve been taking 2 plaquenils at night time. And my rheumatologist tells me its pretty safe. I had a big difference with inflamation and fatigue with plaquenil I love it; I am not planning to leave it soon due to the change it made. It took a while to start working, but now I really think is working on me.

I have been taking Plaquenil for about 10 years. It sure has helped me. Before taking it I had trouble getting out of bed due to pain. After a few weeks on the medication I started feeling a lot better. I still have pain but not as bad as I did without the Plaquenil.

Plaquenil did please with my pain. But I started having stomach issues n found that I have a allergy to sulfur/ sulfa/ sulfurmide . So I had to quit taking it. So happy that some people can take it RX say it the only drug for Sjogrens

Thanks everyone for sharing your opinions. And y'all are right that the sun sensitivity started when I began taking Plaquenil. And that's a pretty difficult battle when you live in Texas!

I'll keep with it and maybe consider upping my dosage.

I’ve had sun sensitivity for a long time (20 years?) and have found the best for me is to use clothing to cover up. Long sleeve white shirt and light weight pants when outside. I’m Now on plaquenil- just started 6 weeks ago, and the doctor warned me about it getting worse…
Wondering if anyone has found anything else to help?

Hi nofreeshows,

I was prescribed Plaquinil and was ready to start it when my last MRI results came in, the joint damage from Psoriatic Arthritis (primary) was so remarkable in comparison to the last, he told me to forget the Plaquinil, and start Humira, so though I have no experience with Plaquinil, I've been on the med journey for years now.

My Rheumatologist told me that sometimes you don't realize how much a med is actually helping until you stop it, and I have found that out the hard way on more than one occasion.

I took Enbrel for two years, first once a week, and by the fifth or sixth day, I was dragging, so he changed it to half the dosage twice a week, that helped to cut down on the 'drag'.

I've been on Humira for about twelve or fourteen weeks now and it's dosed as once every two weeks, let me tell you, I felt so bad a couple of days before the shot, and as soon as I took it, I began to feel better right away. That tells me it's working. Yippee!

Hope you can get to a good place with or without the meds! Listen to your body, it will let you know.

Wishing you well,