Hello all - I've got mild to moderate lupus. I stopped taking methotrexate a few months ago because of side effects and am thinking of going back on hydroxychloroquine which I stopped taking due to nausea and diarrhoea - but now I think that perhaps one month was not long enough to let the side effects settle down and disappear. Does anyone know whether Hydroxy causes weight gain? Having gained three stones since my diagnosis, I can really do without gaining any weight and don't want to take something which is going to make me heavier than I already am. I've carried out some research but can't find any definitive evidence. I've found posts on forums with some saying yes and some saying no, but nothing certain. Can anyone advise one way or the other
Hydroxychloroquine: Hello all - I've got mild to... - LUPUS UK
Side effects of HCQ as documented by NHS U.K.:
Common, serious and rare:
Note that HCQ is no wonder drug and is known to be toxic to our eyes eg HCQ induced retinopathy!☝️
It persists in one’s body for many months even when we stop taking it.
If your lupus is mild do you still need it?🧐
retinopathy is extremely rare and usually only checked for after 2/3 years (?) of being on hydroxyc.
”retinopathy is extremely rare …”☝️🧐
Not according to others here!
I was on it for 5 years and didn’t benefit at all so stopped it didn’t like the issue it could cause with your eyes.
“Conclusions and Relevance : These data suggest that hydroxychloroquine retinopathy is more common than previously recognized, especially at high dosages and long duration of use. While no completely safe dosage is identified from this study, daily consumption of 5.0 mg/kg of real body weight or less is associated with a low risk for up to 10 years. …”
Hi my daughter is on it last 5 to 6 yearsSounds safe you need to do annual eye Oct scan
Wish you full recovery and good health
I’ve been on it for 9 months for Sjorgrens and overlapping RA and Lupus. I’ve lost a little weight, it decreases my appetite. It causes a little bit of diarrhea but not bad, compared to other medications I’ve taken. I stopped having all Raynaud's symptoms and no more chilblains in my fingers and toes, it has improved my joint pain but not 100%. I get my eyes examined every 12 months. I have a fantastic eye doctor who explained all the potentials with the medication but I still feel the risk versus the benefits are worth it,
I have been on hydroxychloroquine for 25 years with no significant problems. Weight gain is not a reported side effect.
Many rheumatologists say that everyone with lupus should take it as a routine if they possibly can as it has many benefits. I believe thata recent research has shown that the risk of eye problems is not as great as we used to think - obviously regular checks are still important.
Personally I would give it another try - it does take time to work and settle down.
“Recent data have highlighted that hydroxychloroquine retinopathy is more common than previously reported.…”
But probably not as risky as many other activities. I was told that exercise and maintaining good weight, eating healthily etc goes a long way with avoiding medication side effects. In this case I think that the benefits outweigh the possible risks. I had similar fears when I first started taking hydroxychloroquine but soon learned to put them to the back of my mind as statistically I was more likely to get hit by a bus 😆 .
Overall I think it has succeeded in halting the progression of the disease and I will be asking the question at my next appointment about coming off it. I still get really bad days but the occasional short course of steroids and making proper use of etoricoxib keep me 'coasting' at a manageable level.
HI Ophelia. I haven’t experienced weight gain due to Hydroxychloroquine BUT I did suffer a lot of gastric problems until I switched to Zentiva brand. Bristol brand is the worst, but if you request Zentiva you’ll be on the best. Good luck. Xx
Many thanks Spotty-ewe. I'm definitely thinking of going back on it and your advice has helped
not sure about hydroxy, but pred does, as can lupus. With most of my drugs of which there are many they state weight loss as one of the side effects. Off all side effects that sadly is not one I get. The likelihood is that you will get some weight gain.
Thanks for this. Sad news about the weight gain though
Hi. I've been on hydroxychloroquine and a cocktail of other drugs. I've had no problems with weight gain until seizure meds.
no weight gain for me and I’ve been on it for many years.
hi Ophelia I am on hydroxychloroquine for some years and haven’t gained weight . I have methotrexate injections as I had awful side effects with the tablets. I hate taking all this stuff but I assume my rheumatologist knows it will prevent the lupus getting worse so I’m just trusting her.
Maybe try hydroxychloroquine again and ask about injections for methotrexate - it’s diy and painless.
Good luck x
I got Glycoma while on Hydroxychloroquine, I have been on them all they take months to build up to the optimum dose with endless blood checks to see what damage they are doing. Madness
Do you take Steroids as they can cause a lot of weight gain and endless side effects .
So I am now down to 5 ml steroids and plan to wean off over several weeks.
I am fed up being a Guinea pig I have been going to the Lupus Centre in London for years. Lovely Prof Hugh’s ( now retired )said to me that he was convinced that the problem for many was the foods and drinks we use.
People with RA are told that the deadly nightshade vegetables are bad for their conditions any thing for Lupus.
Hi Christineosh - I feel exactly the same, worried about how little is really known about these meds we take. It's a concern . Thanks for this. - O
both methotrexate and hydroxychloriquin made my daughter so unwell to the degree she couldn’t function in day to day life and with her job as a midwife. So we are still searching for a medication that works and helps calm her skin down. Creams do absolutely nothing.
retinopathy - mentioned below - is extremely rare and usually only checked for after 2/3 years (?) of being on hydroxyc.
I have been on hydroxychloroquine for about two years. The first brand 'bristol labs' made me feel very sick. I switched to Zentiva and no problems at all from the very start. The difficulty is getting a certain brand but that's another story but it should be that if your gp puts it on your prescription then you should be able to get a certain brand. It can also take many months to take effect but it worked wonders with me and my dsdna is now near normal from being very high. It works by dampening down your immune system and even if you don't notice much effect it may stop you from getting worse.
If you come off any drug you should inform your doctor and Rheumatologist rather than take yourself off. There are usually alternatives. There is scare mongering around drugs and side effects but you have to research, speak to your doctors and then come to a decision. I know of many with eye damage and many not. To mitigate the effect of any potential eye problems, I would go and get a baseline thorough eye check with an Ophthalmologist (which you may have to pay privately for but well worth it) at the beginning of taking hydroxy again if you decide to. Then they have a pre hydroxy note of your eyes which they can measure against at each subsequent eye check. I am going every year but every year or two is your choice as its not cheap and the nhs are just so pushed for time and do not have the up to date equipment sometimes that a private eye clinic has. If even the minutest damage is seen then you can stop hydroxy and hopefully limit any damage but you will need other drugs if your disease progresses. For me, I did not want to become any worse yet so I'm taking it and my lupus is mildish but not my Sjogrens. I want to hold back more health issues and stronger drugs as long as possible.
This is your decision and no one else can make it for you but other drugs cause side effects too and some worse than this but you can limit any damage with regular check ups.
I hope all goes well xxx👍🙂
Hi dg70 I've tried to go without taking anything given that my lupus is regarded as mild to moderate, but I'm now so exhausted all of the time with brain fog / issues concentrating etc, all of which make work very difficult. I find it hard to get up in the morning though I used to be a real early bird. I also have to go to bed early now. As well as these symptoms I have joint pain, raynauds mouth ulcers and gut problems. I'm really at sixes and sevens re whether or not to take Hydroxy
You need something as the exhaustion means your body is fighting something. Even milder Lupus and Sjogrens I have found to be exhausting a lot of the day but hydroxy made things a little less exhausting each day. As my rhuemy said if you're not getting worse then the hydroxy is doing something. It looks like you have found this to be true, without it you're health is deteriorating. When it deteriorates you start to get more damage, some of which can be serious and not reversable. Go back to a Rheumatologist who knows their stuff, go private if you can and choose a good one as you get longer with them and have a good chat, let them know your concerns. mouth ulcers is a classic flare up. Maybe see your GP too as if you're really flaring up you may need help sooner rather than later. Make sure you rest as much as needed, even if its all day for a while. If you push things you'll just get worse. Lupus UK has some informative webinars and BSSA (Sjogrens). Dr. Elizabeth Price has done some good webinars from BSSA which you can get on You Tube. Be informed before your appointments, make a diary from now photograph any rashes, mouth issues etc. The more info you have the more it helps the doctors in the short time they have with you. Don't ever let them tell you you're stressed or it's in your mind, you have actual symptoms. Don't discount medication if it improves the quality of your life, it can't hurt to try and Zentiva hydroxy in a lot of cases has less if any stomach issues and nausea and is coated so no awful taste. Good luck
Here are two good videos:
Dr Arvind Kaul, How Key Lupus Drugs Work - Lupus Europe Convention 2021
Dr Donald Thomas - 7 minutes in
Fantastically well explained on lupus and highly educative.
Wonderful of you to post these here.👏❤️💕
I shall view again.
Dr Arvind Kaul said that HCQ can cause irreversible eye damage but is dependent on too high a dosage so we all have to be careful! Patients on HCQ must have regular OCTs!
They are my fav Lupus videos 💕🙂
Shall we put it this way, everybody in the health profession says reason I am so big is my drugs, inc, hydroxy, metho etc, etc, I eat very little as I have no appetite, yet I do not lose weight, my hubby eats more than me and only weighs 9 stone on a good day!
I’ve been taking hydroxychloroquine for 13 years - I think it’s cake that makes me put on weight! It has normalised my dsDNA etc and stabilised my condition, but I have to be on the higher dose of 400 mg per day to stay feeling reasonably ok.
Do get annual eye tests and an OCT scan as well!
Hello dear, I am not aware of weight gain as a side effect of Hydroxy. Steroids is the only medication that causes weight gain. I have gained alot of with lupus. My metabolic rate is slow. I can be in a lot of pain in the night and wake up shrunk. Just take one day at a time.
In case it is useful, I found this advice for medical professionals looking after SLE patients, this page giving advice on eyes .
Near the end - Section C gives the HCQ guidance.
No, it didn’t cause weight gain for me. But, like you, the first month took me to my limits as I was so bad with gastro problems I could barely eat, plus it was causing other issues, and I was still flaring after the 6 month mark. The worst of the gut issues are in those first 4 weeks.
In the end my Rheumatologist told me I had to come off it after giving it 12 months. We are all so different, then each persons Lupus profile is so different too - for many people the side effects taper off/go and the flares lessen so the pay off is worth it.
Second time lucky for you, I hope! And definitely try different brands if the first isn’t a good fit. ✨
Hi Ophelia, just thought I’d give you another experience (you already have plenty here!) and say that I have had no weight issues with hydroxy. It helped a lot with rashes and sores (nothing else, unfortunately) and I’ve been on a 400mg dose for well over 12 months now. It took about 2 months to fully kick in. I haven’t experienced any side effects—no nausea or anything like that—and I’m doing the yearly eye checks. For now, it seems to be helping.
Good luck! 🤞
hi lovely . I’ve never read anything to say it causes weight gain .. if anything it can cause you to lose it a bit initially as it can reduce appetite a bit . It took about 3 months for me to stop feeling nauseous on it then another 3 to work on rashes . I’d definitely be scared about stopping it now as I’m sure it keeps things at bay .
Hope this helps x
Many thanks Tiggywoos - O