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Plaquenil & Weight Gain/Loss

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Lupus
How has your weight been affected by Plaquenil?
Gained weight. - 21.1% - 4 votes
No noticable change. - 26.3% - 5 votes
Lost weight. - 31.6% - 6 votes
Too many other drugs to know, or just didn't notice. - 21.1% - 4 votes
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Posted 3/10/2013 6:19 AM (GMT 0)
Since being diagnosed with Lupus and taking the normal meds, particularly Plaquenil and Prednisone (over about 6 years), I gained about 45 pounds. Part of that is due to less exercise, part due to having no appetite thus feeling like anything I can get down is ok.

Well, now I've been exercising at almost my pre-Lupus rate (ran a marathon a year before), eating a more moderate diet (clean protein, vegs & fruits), and am no longer taking that weight & bloat causing Prednisone (off Pred almost 2 yrs now). So I've lost about 10 pounds, but no more.

My question: Do you feel like you've gained weight on Plaquenil (ie without Prednisone)? The Plaquenil drug side effects list weight loss, but some people have reported weight gain instead. What's happened with you?

My rheumy wants me to come down and then off my Plaquenil, but I've been resisting simply because I'm afraid to. My Lupus has been really quiet for about 2 yrs, and I'm afraid to change anything. But, if y'all think Plaquenil is part of the lack of weight loss, I'm willing to experiment. This extra weight is so uncomfortable!!!

Thanks
Posted 3/10/2013 2:49 PM (GMT 0)
Why would your rhuematologist want you off plaq?

Plaquenil caused a loss of appitite and weight loss for me. Both times I started taking it, the first time it was so serious I had to stop taking it. Started again several years later when I flared again and had loss of appitite and weight loss but a bit more moderate.
Posted 3/10/2013 4:07 PM (GMT 0)
Hi Lynnwood,

Plaquenil caused some weight loss for me when I was on a higher dose. Now that I am on 200 mg. per day, I don't notice that anymore. Prednisone, on the other hand, has caused both a gain/loss, depending on the dosage. I noticed a six pound gain with Benlysta (happened pretty quickly). That might change now that I am off the Benlysta. Hopefully, now that I am on the right dosage of Prednisone, I can go back to being a little more active and lose the 6 pounds. I am also dealing with a torn meniscus, which isn't helping matters right now. My Rheumy wants to keep me on the 200 mg of Plaquenil and 10 mg of Prednisone every other day to see if this will hold me. I agree, weight gain is uncomfortable :)

Laura
Posted 3/10/2013 6:29 PM (GMT 0)
I haven't seen any weight gain and I'm on a high dose of plaquenil.
Posted 3/10/2013 7:43 PM (GMT 0)
I did not notice a weight gain with the plaqenil. My weight came when I started the predisone and the steroid injections for my back.
Posted 3/10/2013 9:14 PM (GMT 0)
Hi Lynwood,

The plaquenil has caused a weight gain of about 20-25 pounds for me. Since I was diagnosed with MCTD a year ago, Plaquenil has been the only medication (besides eye supplements, thyroid meds - been stable for years, and most recently Evoxac) that I have been given. I completely understand your frustration with not being able to lose the weight - I have been doing weight watchers the last couple of months and am only able to maintain (which is much better than gaining more). My rheum and PCP are in agreement that the Plaquenil is causing the weight gain for me, but going off is not an option for me now as I am very symptomatic with a lot of sicca symptoms.

I am so excited to see that you are able to run again. I have been cleared to start running again, but am finding it a losing battle with the joint popping/pain and the fatigue. Biking and roller blading seem to be working for me, for now. I used to run in a lot of races as well and miss the being part of the running community.

Best of luck on what your decision is, keep us posted!

Amber
Posted 3/10/2013 10:02 PM (GMT 0)
Beach Girl,

Well, the marathon running was pre-lupus. Now I am able to go for up to 30 minutes of jog/walk, but my hip/knee/ankle pain precludes me from more training than that. It is unknown if the hip pain will lesson with weight loss, but it certainly wouldn't hurt. I'm going to push for a hip MRI when I see my rheumy tomorrow.

Otherwise, I have regained my muscle strength and twice a week (given I warm up & stretch for 20 minutes first) I am able to do an hour weight workout at about the same level I was pre-lupus. I wake up very stiff and tight, which I attribute to Lupus, but I don't think stopping Plaquenil is going to change than. It may be age/menopause related, anyhow. Pre-lupus I was 43, now I'm 54!!

I do miss the running community terribly, and am having *great* difficulty breaking back into it. Sigh.

I love your idea that it's just the Plaquenil, but I think your thyroid medication may be contributing to your weight gain more than you think.

Everyone, thanks for all the comments!
Posted 3/11/2013 9:34 PM (GMT 0)

sjkly said...
Why would your rhuemotologist want you off plaq?

Asked & answered at Drs this morning...the 2 pills I take daily are the "therapeutic" dosage, 1 pill daily is the "maintenance dose". As my Lupus is very quiet, he wants to see if I'm ok on just maintenance, since the possible eye effects are cumulative over time. So the less you take when the Lupus is quiet the more you can take later in life (if you need it) with less overall eye risk.

Nice to have such a thoughtful Dr. Six months till I see him again...
Posted 3/11/2013 9:41 PM (GMT 0)
Interesting! I had been losing weight fairly rapidly and without trying before starting on Plaquenil - and it stopped after a few weeks of taking it, as did the alarming hair loss. I had no idea Plaquenil could be a weight gain culprit. I've been on Plaq for 4 years now, and weight gain is a problem. My neuromuscular massage therapist says I have a lot of interstitial fluid - and I do feel very bloated. I went through early menopause and can't blame that. Also have right hip problem that I want MRI for. Please post again if you figure it out! I don't blame you for being concerned with stopping the Plaq - but I guess there's only one way to find out if it's still helping......
Posted 4/15/2013 4:57 AM (GMT 0)
I have been on Plaquenil for a little over a year and within the first month of taking it I gained 20 lbs. and since then I have gained 10 more...

I recently went cold turkey to see if I could cope without it and so far so good!
Posted 9/3/2013 1:33 PM (GMT 0)
hi today is my first time in the forum my mum as lupus and as been taking plaquenil 200mg since feb and in may was up to 400mg we started to notice that she had lost her appitie and started to lose weight she always feels tired and mussels feel weaker dropped back down to 200mg and then stopped them al together on the 23rd august the hospital have sent her for a chest xray but iam thinking hopeing it could be the plaquenil causing theses problems its been 6 working days since the chest x ray if it was serious iam sure we would have heard by now . as anyone else had bad side effects with plaquenil and how long do their take to get out of your system thankyou for any help
Posted 9/9/2013 7:33 PM (GMT 0)
No weight gain for me from any meds I am on (except from previous treatments with pred and zyprexa).

And plaquenil does miracle for pain. Try to not remove it from your treatment plan.

I had this med removed for 2 years and suffered quite a lot of joint, muscle and tendon pain.

The main side effect from plaquenil is some digestive problems. Severe is retinal degradation, everyone should get an eyefield test yearly.
Posted 1/15/2014 7:02 AM (GMT 0)
Lynwood, I can't answer your question about weight gain or loss on plaquenil but I did go off plaquenil a few months ago and haven't been the same since. I regret the decision which had I made because I'd felt pretty well for quite some time and was doing my best to slowly get off as many meds as possible. I wish I had been as resistant to make a change as you are.
Posted 1/15/2014 8:17 AM (GMT 0)
I've lost weight but not sure what to attribute it to. I think initially it was all the ulcers so I didn't eat so I thought prednisone would do my weight some good (I don't have very much on me so some extra insulation for the cold would have been good). Except it didn't and I still loss weight. I did take Plaquenil on its own a few years back when they thought I had SLE but didn't meet the criteria and I vaguely recall some suppression of appetite. After doing some reading, it turns out people could also lose weight during an active episode so not 100% sure what caused the weight loss.
Posted 11/27/2017 9:55 PM (GMT 0)
Spotted this topic and thought I'd report in --

I've been off the Plaquenil for over 3 years now. My Lupus is remaining "quiet", but no weight loss associated with stopping the medication.

Aw, well...
Posted Yesterday 2:37 PM (GMT 0)
That's awesome that your lupus is "quiet"! I haven't noticed any weight gain from Plaquenil but having UC I tend to not gain too much weight anyways. Are you taking any meds for lupus? Just curious as I have been on Plaquenil for over 2 years and thank goodness my lupus has been "quiet" as well. It's bizarre as sometimes I think, maybe I don't really have it and it was drug induced after all - wishful thinking or perhaps denial - I know. Glad to hear you are doing well lupus wise.
Posted 12/11/2017 2:53 AM (GMT 0)
After 3 years without any active Lupus symptoms, my rheumy suggested we try doing without the Prednisone. Now I've been totally medication-free for over 2 years.

Now that still means low-stress, healthy eating, regular mild exercise, good sleep, and taking a nap 2-4 days a week. Along with not scheduling too many things in a day, and heaven forbid I try to go back to work!
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