Plaquenil

People often have some intestinal issues when first starting plaquenil - things generally settle down in a few days. If the issue persists over 10 days call your Dr. Also, it's good to have at least a few bites of food with it.

What kind of Dr are you seeing? It takes a rheumotologist to completely diagnose and treat Lupus. Even then we often have our symptoms treated long before they feel confident in making a Lupus diagnosis.

Sometimes, esp, with few symptoms and negative blood tests, diagnosis can only be made by trial and error to see what meds improve your symptoms.

Hang in there!

Oh, and I had terrible GI upset for the first four days I was on plaquenil. Then it went away, and I haven't had any side effects since. Like Lynnwood said, if the GI distress keeps up for ten or more days, let your doctor know. I've also heard that some people who can't tolerate the generic of plaquenil (hydroxychloroquine) because of the GI upset do okay on the brand name Plaquenil.

Thanks everyone. I am not seeing a rheumatologist. Just a dermatologist. I did not have Gi upset initially but have it pretty bad now about 3 weeks in. The Plaquenil has totally cleared my skin minus my scalp. But the hip and lower back muscle pain are still very severe. Guess I'll be demanding to see a rhuemologist now. Thanks again.

It really helps me to know that other people are having trouble getting diagnosed. I thought it was just me. In my case the symptoms are not the joint pain as much as the inflamed heart, lung, gut. and brain. My whole life is centered around keeping the inflammation at bay with food, vitamins Ibuprofen and in my lowest moments...prednisone. Thanks for being there, I don't believe others understand these issues. Andrea

Plaquenil is effective for Lupus patients, as well as people with UCTD (described to me by a rheumatologist as "Lupus-like" or "Lupus-lite" or "mild Lupus"). So it's very possible to be on Plaquenil without having a formal Lupus diagnosis. To get a Lupus diganosis you need to have 4 or more of 11 Lupus criteria, within a 5 year period. A lot of people have less than 4, or as in my case, more than 4 but spread out over much more than 5 years. So it's very possible for plaquenil to do good without you being considered to have Lupus.

I went on plaquenil in 2004 for joint pain, high ANA and pericarditis. It stopped my symptoms cold, after it kicked in in a few weeks (one must be patient with plaquenil) In 2015 I got pleurisy for five months; after getting routed around from GP to pulmonologist and then to a rhematologist, I ended up back on plaquenil and once again it worked its magic and really helped tremendously with the problem. I just don't know what I'd do without that drug. It's very, very effective for people at the milder end of the UCTD-Lupus continuum (in other words, people with mild Lupus-y disease; in more severe cases it is usually still part of the mix but definitely not the whole treatment). If your doctor won't diagnose you with Lupus, he probably thinks you fall into that category of milder disease.

In the old days, getting a diagnosis of Lupus was really bad news in terms of health insurance, so doctors tried to avoid it unless it was a clear cut case. In other words, once you had LUPUS tattoo'd on your forehead, your rates skyrocketed and you could lose your insurance. At least that's what a rheumatologist told me back then. With the new health care law, I guess it doesn't matter anymore. It's not like insurance can raise your rates if you have Lupus, but in the old days that did happen. So historically, I think doctors avoided that dx, but perhaps going forward they will be quicker to call mild / borderline cases "Lupus". However, it's been my experience that patients are far more interested than doctors in putting labels on things - rheumatologists are pretty focused on the practical issues of your symptoms and how best to treat them, not on whether something is UCTD or Lupus.

Intestinal problems should resolve pretty quickly, but I do have ongoing gas/minor discomfort from plaquenil. Beano and Gas-X help a lot with that. It's a small price to pay for the major positive impact of the drug, for me. I'm on 400 mg/day. Trying out different times of the day and/or taking it after a full meal might help.

Post Edited (LarryF) : 6/26/2015 9:02:05 PM (GMT-6)

I have discoid Lupus & started taking Plaquenil (generic version) about 3 or 4 months ago. In the beginning, I was super excited because it was the only thing helping my back stop being so angry except for the injections. (which I hated & have been doing for about 6 years) But then I started getting the horrendous itching & burning side effect down both of my inner arms, from the hand up to the elbow. Sometimes it would last about 15-20 minutes (which still feels like a lifetime) & sometimes it would last for over an hour. It scared me to death! So I went from taking the Plaquenil twice a day to once a day but it's still happening, just not as frequently. Then I heard that if you take an antihistamine it will help. So now I'm taking that as well. Has anyone has this problem & seen where it will finally just STOP!!! I don't want to stop taking the Plaquenil but I can't keep going through the itching & burning like this. And now I'm getting headaches & nausea as well.