Hydroxychloroquine: Please can anybody give me... - LUPUS UK

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Hydroxychloroquine

Matt80
Matt80

Please can anybody give me yours views on if Hydroxchloroquine if have put weight on or lost weight ?

Hope everyone is having good day x

30 Replies
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No change

I am just about to start this so would be good to know! x

I've been on it for a couple of years and haven't noticed it affect my appetite or weight. Hope that helps!

Hidden
Hidden

Hi Matt, I’ve only been on it a couple of months and hope to go off it in about a week. I’ve definitely lost my appetite since being on it, but unfortunately, I haven’t notice any weight loss.

Matt80
Matt80 in reply to Hidden

Please can you tell me why you are only taking it for such a short time ?

Hidden
Hidden in reply to Matt80

I’ve only been on it a short time because I fought going on any meds. But, I was ruining my husband’s quality of life along with mine, so I finally caved and have been on it a couple of months. I’m only on 200mg per day. My Rx runs out soon, so I’m assuming they were planning on upping my dosage? Or at least discussing it? But I think I’m going to go off it, at least for 3 months.

milkwoman
milkwoman in reply to Hidden

Hydroxychloroquine takes at least 3-6 months to start to see results and up to a year to feel full benefits. The medicine has to slowly build up in your system and that takes time. What hydroxychloroquine does is keep inflammation down with the hope of preventing (or at least delaying) major organ involvement. So stopping isn’t a good idea. (If you stop with the plan of starting again in 3 months it will be like starting over again). You may not think that the medication is doing anything but once you stop you may realize it actually was.

My advice is to stick with it. Your dose won’t necessarily increase - your doc just may want to access how you are getting on. Since hydroxychloroquine can affect your eyes, you should be seeing an ophthalmologist every 6 months. Also, your doc will want to know if you having any adverse side effects (usually due to filler ingredients). For me, I cannot tolerate any of the generic brands. I had terrible stomach pains with them so I take namebrand Plaquenil (I’m in the US).

New guidelines dose Hydroxychloroquine by height and weight. It’s good to be on the min dose that eases symptoms. I take 300 mg daily, split dose (200mg am, 100mg pm). I’m hoping to stay on it as long as I can as the other treatments for lupus are much more aggressive.

Hidden
Hidden in reply to milkwoman

Thank you MW. I understand all this. I really do. I also understand that every medication has it’s side effects and one has to weigh the good and bad and make decisions that work best for them. I have a plan to switch to a 3 month program of supplements without side effects and see how that goes. If it doesn’t work, then I will go back to this route (possibly). But thank you for your advice. I honestly am not going into this 100% blind. But, one of the side affects of a Hydroxychloroquine is blindness, and that concerns me. But thank you. I’m not suggesting that anyone else follow the path I’m trying. Matt asked me why I plan to go off, so I answered. If what I do is successful for me, I will let everyone know, but I’m a firm believer that everyone needs to make their own choices based on what is right for them. We can’t make choices unless we have information from all points of view. If that makes sense (I just woke up and it’s 6:30am. I’m not fully awake yet.) But again, thank you.

milkwoman
milkwoman in reply to Hidden

I completely understand!

The eye thing freaked me out in the beginning as well which is why I had my eyes checked out before even starting hydroxy. I’ve been on it since July 2014 and get checked every 6 months by my ophthalmologist. So far, my eyes have had zero change (phew!). I know hydroxy is keeping my lupus and Sjogrens at bay. Yes, lupus wasn’t enough... I had to have Sjogrens, too. 😉

I’m glad you are well informed and wish you luck in your treatment plan! I follow a very healthy lifestyle - eat well, stay out of the sun, take the purest forms of supplements and meds that I can, get plenty of rest, and have a consistent exercise routine (cardio, strength and core 6 days per week). Even with all this, lupus/Sjogrens kicks my butt at times.

You know your body and health better than anyone. And yes, we are all different and what works for one may not work for another. Ask LOTS of questions and learn as much as you can. It’s been 5+ years for me with my diagnoses and I still learn something new every day.

Hidden
Hidden in reply to milkwoman

MW, nicely put. All my best to you and I’m glad things have worked well for you🙏

2sfamily
2sfamily in reply to milkwoman

Hello. Can you tell me what you take or use to help with Sjogren's. They gave me Pilocarpin. Is there any other natural or over the counter products you use?

Hidden
Hidden in reply to 2sfamily

Hi 2sfamily, I would ask your doctor or hopefully someone in this community can answer you. Someone in here had suggested Biotene for dry mouth and I know there are lubricated eye drops, but, I would think you’d also need supplements. The two above mentioned items can help ease obvious side effects of Sjogrëns, but there most likely is more going on that you’d want to address? But ask your doctor about supplements, diet and exercise. I don’t know much about Sjogrëns, but I know there are quite a few people in here who do. Best of luck to you. I hope you find the relief you need.

milkwoman
milkwoman in reply to 2sfamily

Hi there! Sure!

I use prescription drops for my dry eyes (Xiidra) twice a day in addition to a few different kinds of preservative-free OTC drops. The Xiidra has really been a game changer for me BUT I do have to be careful to not let the medicine enter my lacrimal ducts as then I get sinus issues.

Even with the Xiidra, my dry eyes have gotten worse over the years (vision is still good and unchanged) so I’m seeing a dry eye specialist in January to discuss other treatment options including punctal plugs. I’m looking into a specific kind of plug called SmartPlug by Meddenium and don’t know yet if this specialist uses them (my current ophthalmologist does not). I prefer to wear contact lenses over eyeglasses so I’d like to see improvement in my tear production.

Before Xiidra, I did try Restasis but it didn’t do anything for me.

Matt80
Matt80 in reply to milkwoman

I fully agree with milk woman you need to be on it for longer than a year good advice

My_get_better
My_get_better in reply to Hidden

I have been on hydroxychloroquine or Plaquenil for 20 years to present, they are the same drug, generic brand or not will see how well your stomach can tolerate it. I’m on every M,W,F 200mg, Tuesday and Thursday 400mg except weekend Hallelujah.

Don’t need to worry too much, it won’t go away if you’re keep thinking about it, right?

All the best to you and your family 🎋🌾🌸🌺

No change for me.

No change for me.

Have a blessed day.

Definity have lost my appetite, my weight has been going down since I started 5 months ago.

I have put on weight but don't believe it's due to Hydroxy.

I was on it for 5 years weight went up, I stopped taking it May this year because of gastric problems, to be honest I feel better than ever.

Hi, I'm on it for years now, started with 400 ml per day for a year and half, then 300 and now I'm on 200 ml. Didn't notice any changes on my weight at all. It's really a great medicine and made me feel much better. Good luck

Hi I’ve been on 400mg since May. I have lost weight however I have been able to be a lot more active as flares are reduced and so is pain and inflammation so I’m able to regain some of my old life back. Which was very active. I don’t believe it is because of the hydro that weight has decreased. I’ve noticed no change in appetite. And weight has not stabilised between 58-60kg.

My bloods speak for themselves so pleased I went on it. xx

I meant have stabilised. :) xx

Hi Matt. They tried me with it when I was first diagnosed with RA but I couldn't tolerate it so was taken off it. I wasn't on it long enough to give you any info re weight.

No change for me. I did learn, however, early on that I couldn’t tolerate the generic forms due to filler ingredients (had horrible stomach/digestive pains). I’ve been on namebrand Plaquenil for about 5 years now. I get my eyes checked every 6 months and I far, no changes there either (phew).

Taking it for 15 yrs no weight changes

Hello. I've been on for over a year. In the beginning I had some bloating and stomach irritation but that went away. It has not affected my weight either way. I do get my eyes checked every 6 months so far so good. I know this is a scary journey. Hang in there. Sending positive thoughts your way.

I have been on hydroxychloroquine for 3 years. I have mainly been using 200 mg daily during most of the 3 years. I would not contribute any of my weight loss to it, since I have lost 25 pounds over the last year. The weight loss was mainly due to exercise and watching what I eat and drink.

On a slightly different note, I have stopped taking hydroxychloroquine about two weeks ago in preparation for the knee surgery I am having next week. I have noticed an increase in joint pain during this time, but do not know if it is due to the lack of hydroxychloroquine or the progression of the knee pain. I am supposed to stay off of hq for 2 weeks post surgery, but I may stay off of it longer to see if the general inflammation lessens on its own post surgery. Prior to the knee acting up, my rheumatologist had suggested going off of it. So this seems to be a window to test that suggestion.

I have not noticed a change in weight in the past 2 weeks, since being off of it.

Im currently taking hydroxychloroquin but i feel like i want to stop as the side affect seem to be quite bad from what iv read...and read so many stories of how people have stopped them due to feeling that they're better not taking the tablets at all.

Thank you all for all your comments keep well

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