Hydroxychloroquine as a medication for RLS

[birdman74]

I was recently in South Africa on holiday and had to see a local doctor regarding my medication. First the doctor knew of RLS very well and confirmed that she had several patients with the condition. She told me that she often gets her patients with RLS to try droxychloroquine which is a drug used for the treatment of malaria. She told me that it is often effective. Has anyone tried this or have heard of it as a treatment?

[Hidden]

The only thing i know of that is used for malaria is quinine, doctors used to give that for RLS years and years ago as they didnt know better. If the above med you have mentioned is the same as quinine, then i would not be amused if my doctor suggested it to me...

I ususally do research on any med name i dont know about or heard of, but as yet i havent looked the above med up. So i will have to research it later...

[birdman74]

Thank you Elisse. I too related hroxychloroquine to quinine which I knew was, and still is I believe,,a treatment for malaria but which had also been tried for RLS. It's just that I had never heard of that particular drug being used for RLS. I did not get time to question the South African doctor any further - it will be interesting seeing other comments if there are any.

[Blueeyes5265 in reply to birdman74]

That's the drug that the president is promoting, for the covid19 pandemic

[birdman74 in reply to Blueeyes5265]

Blueeyes5265 - can't believe it was 8 years ago that I posted that question. Haven't things moved on. Have you found the cure for RLS yet?

[Hidden]

I took that medication for RA

It takes 5 full months to see any changes in my condition for that.

Recently, I quit taking that medicine..

I can't say it helped with the RLS nor the RA for me..

each case is so different.

I take Simponi, Chemo pills as well.. lawdry, what becomes of the

3 drugs combined?? I often wonder...

[birdman74]

Thank you Yikes - don't even think about what happens to drugs when they are combined - heaven knows!

[nightdancer]

Quinine, now, according to the Federal Drug Administration in the US, is only to be used be used to treat malaria. I have put this in sevearl places. Long story short, they have put very heavt warnings and restrictions on Quinine use, as there has been many problems with heart defects, and devloping cardicac problems. They have their strongest warning on it. They say unless you have malaria, no one should take Quinine, ever. Hoever, I am glad that a doctor knows what RLS is, or has heard of it. I have no idea what is available in south America. I have talked to one person a couple of years ago on FB, and she then, if I remember right, there were not many of the same meds available like the dopamine agonists, that have their own issues. That is what I remember on other meds, but don't quote me. also, all products in drug stores that are over the counter have all been pulled from the shelves. so, I do know about that. Hope this helps.

[Hidden in reply to nightdancer]

Nightdancer..I took myself off Hydroxychloroquine because the

doctor kept making me get my eyes tested..and told me that he

would not refill it unless I had a full (dialation inc) eye exam..

I figured that it was not good for me..I freaked and flushed

the drug..it was given to me for RA 8 months ago...Since I am off

it now, I am having hellish times and I just wonder if it is because

I took myself off after being on it for all of that time...

Are you saying that the medicine Hydroxychloroquine is really

pulled from the market? Wow...My doctor didn't do me any favors...

He told me that some people get total pain relief from taking

the medicines. *I didn't.

I never knew that it was used for RLS...

Ya learn something new everyday ...I will be a monkey's uncle...

I'm beaming ear to ear about this..I actually did something good

for myself...

[nightdancer in reply to Hidden]

I am glad. It is totally banned over here, for sure, any med with Quinine,. That is for SURE. fda.gov has the warning letters "only for malaria". You should print them out for your doctor. Quinine was only to be used for leg CRAMPS (emphasis) not RLS anyway. Irks me how many doctors make this mistake.

[2BAnOldLady in reply to nightdancer]

The FDA did not say Hydroxychloroquine is to be used only for malaria. Many, many people take Hydroxychloroquine for chronic conditions and it helps their condition. You are spreading misinformation. I have taken 400mg a day for over ten years with ZERO problems. I also get my blood taken every three months and have an eye exam twice a year.

Hydroxychloroquine helps my RLS. I had to stop taking it prior to a joint replacement surgery and I was trying to get out of bed to walk 3 hours after surgery. When I resumed Hydroxychloroquine, my RLS was significantly reduced. I wouldn’t take it just for RLS though.

[nightdancer]

Good Grief. I typed South America. sorry! South Africa

[birdman74]

Thank you nightdancer you have done your homework. I do remember that quinine was used to cure or alleviate several conditions years ago but it went out of fashion. I have had several people ask me whether I drink tonic water to help with RLS as it contains quinine - or is that the gin - gosh, I've forgotten more than I ever learned.

My problem now is that I have changed from Mirapexine to Gabapentine (300mg tablets three times a day) used together with a 3mg neupro patch and I am still suffering although not as bad as before. What I have done is to cut some 3mg patches in half and apply one half with the whole one so that I think that I have effectively increased the neupro patch to four and a half mg. I will tell my gp on Wednesday and ask his advice. His reply will be "I don't know anything about these medicines". Anyway I will look forward to other comments.

[Hidden in reply to birdman74]

Birdman. I would choose the gin over the water. =)))))

[nightdancer in reply to birdman74]

When you say you cut the patch, we should say that that is not "normally" advised. But, I know severall people who do this. just don't want new people to get confused. We have to do what we have to do. I have never used the patch; just observing others

[Hidden]

birdman..wait...

I would hate to be a GP. They are great for blood pressure, blood sugars,

routine, general sickness but they are certainly not specialists...

They don't really specialze in anything except to tell you to go to

a specialist..or point you in the right direction...

I am fed up with having to see the GP for a referal. It's a waste

of a co-pay and of the GP, my time... = / It works that way for our

insurance also...Makes me mad..frustrates the GP too, I am sure...

.

[nightdancer]

Doctors are all different. My GP is an inernist, also, and she is the one who prescribes all of my meds, and she works with my pain doctor and neurologist and the sleep doctor. they actaully all communicate. Shocking though it may seem....... she uses specialists liberally, but she takes thier suggestions and she and I work it out. She is my hero, younger than me, and will be around for a long time, hopefully. It took a decade of scratching and clawing to get a :"team" of doctors that will communicate with each other. Ykes, you are in the US, too, so we usually can change doctors easier than they can here in the UK. I have "fired many doctors".

[birdman74]

Yikes - I only take the quinine because it is in my tonic water taken with the gin - it's the gin that counts! My GP is a general practitioner. I am sure he is great at dealing with 90% of the conditions that he is faced with. Unfortunately RLS is not in the 90% and it appears that I am teaching him rather than him advising me. As for him forming a "team" with the specialist - well forget that.

Nightdancer - I wouldn't normally recommend the cutting in half of the patches but I was desperate at the time and had to try something. I am hoping that my GP will come up with an alternative although I doubt it. He will be aware of the cost of the patches and will try and think of something cheaper. I will probably end up going back to see the specialist. All I want is a couple of evenings not walking around my bungalow and a few hours of sleep of a night.

[Hidden]

Goodness Gracious, I cut every medicine in half when I start. I was

thinking of doing that with a patch. I am up-chucking my meds

for lack of sleep, intolerance, just being rough with my chemo mix

for RA (it's a considerably less amount than what is given to someone

with Cancer at this point)

I think that my paiin medicine is a hoax for me..I am worse off maybe

because I sleep so deep and walk around with a tummy ache like

I was kickboxing my hubby all night and he got me good in the gut...

Oh, I feel just crumy like I swallowed a few rocks and want to just

stick my finger down my throat to get er' done with here...

If I can't cut my patch in half, screw that...I am going to see what else

I can do...Frustrating is how I would describe my medical issues tonight.

[Rlssucksbad]

I have been using hydro chloroquine since may for Rhemetoid arthritis and sjrogrens disease and just had a bad case of RLS due to promethazine, Benadryl, topamax for nerve pain at night and levothyroxine combo that was a late onset. I figure the hydro chlorine must have something to do with it because once my does was raised to 400 mg a day, a perfect dose to stop my joints in my feet from swelling twice there size and not being able to walk and the gland in my face going from looking like I had the mumps since Feb 2020 and they are almost back to normal, the increase in the medicine then the restless leg syndrome happened almost immediately. So, for right now, I’m off my promethazine 3 x a day, Benadryl and topamax for sleep and still on my levothyroxine but not with the hydro chloroquine. Meds are getting adjusted soon but it is not worth stopping the malaria drug and the RLS is maddening. I can deal with nausea, sleep still sucks but if you are on hydro chloroquine, give it time, it is working for my diseases but it took time.

[Rlssucksbad]

Sorry if my first reply was scattered. I was diagnosed with RA and sjrogrens in may 2020. Started hydro chloroquine in may 2020. Upped my dose to 400 mg in September, October my feet, and most joint swelling is mostly under control and my gland went from severely swollen to almost normal. I now do suffer from RLS and I was curious if the malaria drug was exacerbating the promethazine, Benadryl, topamax and levothyroxine that appears to cause RLS. It looks like it does not but I’m off of those except the thyroid and will be put on other meds and a new RLS MED this week.