Interesting article that says clonidine, a blood pressure medicine can be used to treat RLS

[SueJohnson]

consumerreports.org/cro/201...

[SueJohnson]

Other names for clonidine are Catapres and Kapvay.

[ChrisColumbus]

Thanks Sue: clonidine has been around as a possible treatment for RLS for 30 plus years - there's a study listed on PubMed from 1985. It gets referenced here occasionally.

See also this:

drugs.com/comments/clonidin...

Like everything, clonidine has side effects including dry mouth, drowsiness, depression and constipation.

[Hidden in reply to ChrisColumbus]

Hi, ChrisColumbus.

If memory serves, a sleep-expert neurologist prescribed clonodine for me around 1998. I no longer have my contemporaneous notes; however, I recently prepared a summary list of RLS medicines that I had taken over the past several decades and my observations regarding same. My List includes entries for both Klonopin and clonodine.

Upon the assumption that I did not confuse the two, my List reflects the following observations for clonodine: "Effective: ? Felt drugged."

If memory serves, I discontinued use shortly after it first was prescribed. I was working at the time and needed to be fully alert. To be sure, since I now am retired, it might be worth reconsidering by me if pregabalin loses its luster. In my case, a collateral benefit might be a lowering of my allegedly high blood pressure.

Be well.

[smilingjane]

Hi Sue

Clonodine did help my RLS though unfortunately the accompanying depression wasn't good.

I went through the whole list of meds, etc and I am finally on Buprenorphine which is working really well.

It dosn't have the side effects of Oxycodone which I found eventually worsened my RLS.

I am on a low microdose of Buprenorphine, 1200 mcg per day. It has taken many years to get this far and I am great full for the medic that prescribed it. It shouldn't have taken so long.

RSL sufferers shouldn't have to wait so long for appropriate treatment. Many years and nights of untreated RL often has long term health implications. Sometimes irreversible.

If anyone wishes to om me re treatment in the uk please feel free.

Jane 😊

[hausbauer in reply to smilingjane]

Hello smilingjane, this is just to ask you if the dose of 1200 mcg Buprenorphine per day is correct. And you seem to have no mentionable side effects. Good for you. I am taking 200 mcg (0,2 mg) per day which helps me sleep and I am happy to have it. Nonetheless I have side effects like sleeepiness during the day, dry mouth in the night, loss of appetite, and quite often breakthrough RLS (slight) in the afternoon or evening until I take my dose. I was thinking of taking more Bupr. but am reluctant to do so thinking the the side effects will increase. And they are bothering me quite a lot.

So I am really astonished that you can take 6 times my dose and still be happy with it. It shows again that we all are different, as so often mentioned here.

Good luck to you and please confirm that the figure is correct.

[smilingjane in reply to hausbauer]

Hello Hausebauer

I am pleased to hear that you are being treated with Buorenorphine. Some people do get side effects such as you have however.

I had a dry mouth at the beginning for which I used sugar free pastels you can buy online for that purpose. I don't suffer from that now though. And sleepiness through the day can be an unfortunate side effect. I regard it as a small price to pay for the alleviation of what was pure hell.

Have you tried trying your dose at different times such as earlier in the evening? I was suffering from RLS 24/7 before being treated with Buprenorphine and I find the current dose usually more than enough.

I can get by with less and often do. I like to keep a stash by in case I ever have a problem with supple/delivery. As has happened in the past and I have been left with no medication and severe RLS.

This has happened in the past so I like to err on the side of caution.

200 mcgs is a tiny tiny dose and it sounds like you need a higher dose as your RLS isn't being totally covered.

There shouldn't be a problem obtaining a higher dose and this medication dosn't produce a high as other opiods do so don't feel concerned about a slightly higher dose.

Ear plugs are going in as it's getting near midnight 😉 Happy New Year

Best wishes

Jane

[oldfidgetlegs in reply to smilingjane]

Hi Jane I'm 74 and have had RLS since my teens, less severe then but for years now very extreme such that I self-harmed on one occasion simply to divert my attention to a more acceptable form of pain. Even so, my UK GP simply will not consider Buprenorphine and I continue on Pregabalin 500mgs nightly but with less than satisfactory results. I'd love to know how I can find a more sympathetic GP who truly understands this awful condition. I'm so pleased to hear that your situation is reasonably under control. Any suggestions gratefully received.

[smilingjane in reply to oldfidgetlegs]

Hello oldfidgetlegs

I am so sorry to hear of your suffering. Had a look at your bio and see you have severe mobility issues aside from RLS.

I wonder where you live. Are you able to change doctors to find one that is more aware of RLS?

Can you afford to see a nureologist privatley? There are some that are more aware of RLS and willing to prescribe.

I am not aware of Pregab doses. Others more clued up may step in here. Would a higher dose be feasible?

Private message me with your location.

Jane 😊

[SueJohnson in reply to smilingjane]

It's interesting that I received a notice of oldfidgetlegs reply to you and also a notice of your reply to him. I don't know why that is ??? Did you at least also get a notice of his reply to you?

[Madlegs1 in reply to SueJohnson]

If you saved or liked a post, you will get notified of all contributions to that thread.

Lucky you.

I tried to stop notifications from BHF , and could only do so by stopping ALL notifications from all my interests.

Then I re engaged with the communities I really wanted. But am getting no notifications at all.

HU seems to be really dysfunctional.

[SueJohnson in reply to Madlegs1]

Strange. But I didn't do either of those in this case.

[Madlegs1 in reply to SueJohnson]

I rest my case 🤪.

But at least i got notified of your reply.

Thanks for your influential input!👍😆

[smilingjane in reply to SueJohnson]

Hi SueYes I did get a reply from Oldfigetelegs.

Did you get a response because you saved the post?

🤔

[SueJohnson in reply to smilingjane]

Nope.

[smilingjane in reply to SueJohnson]

Oo thats odd 🤔

[oldfidgetlegs in reply to smilingjane]

Thanks Jane for your comments. I live in SWest UK - my partner is always on at me to change GPs but without a recommendation it could be a case of 'out of the frying pan...' I'm going to ask at the Practice if any of them are at least interested in RLS and start from there. Meanwhile, stay well!

[smilingjane in reply to oldfidgetlegs]

Good idea.Though theres no shame in changing GPs again if that's what it takes.

Seeing Prof Walker and getting appropriate medicine has changed and saved my life. Nobody should have to suffer from this cruel disease.

I wish you all the luck going forward.

Jane 😊

[Hidden]

Clonidine is an older style medication that for some reason is rarely used these days.It is an alpha2-adrenergic agonist. It is often used in people who (as well as RLS) also have an anxiety disorder or attention-deficit/hyperactivity disorder.

Its use may be limited by adverse effects including sedation, irritability, depression, and orthostatic hypotension.

It possibly serves as an alternative to the existing suite of RLS medications.