MS and RLS

[janniek05]

I feel like I am blowing up with treatment using Pramepraxole. 30 lb weight gain and I just keep increasing the dose to rest. Can I go cold turkey and get my ankles back?

[nightdancer]

Cold turkey from a dopamine med is NOT a good idea., If you think your RLS was bad before, it will be increased immensely with that sudden drop of dopamine. The best thing I can tell you is that if you go off all at once, you need another med to "back it up" like a pain med for a little while, to ease up the RLS which WILL worsen if you go off of it cold turkey. Weight gain is not a great side effect, for sure, but you must talk to your doctor first. I have seen people go cold turkey and it is not pretty, I can promise you. Your brain will react first and in turn the RLS, because RLS is neurological. That is the best advice I can give you, and you cannot just stop this class of meds, unless you want really worsened RLS. When I was on Gabapentin (not a dopamine med) I blew up 60 lbs, so I have experienced the "disappearance of my ankles!

[Hidden in reply to nightdancer]

I finally managed to come off Mirapexin about 6 weeks ago after going Cold Turkey! It was a deeply unpleasant experience but the best thing that I've ever done.You need a clear diary and don't attempt to drive as you will be sleepless for some time.No sleep for 5 nights and a great deal of pacing to relieve violent symptoms.Hot baths helped.Turned corner after night 5 and now feel so much better in every way.RLS symptoms are less.Sleeping better though not perfectly.Drug free feels great and am now trying to manage through diet and supplements.Talk to your GP but in my experience they are clueless and no help at all .Coming off Mirapexin slowly just drags out the detox process-your body screams for the drug because it's addicted.

[Hidden in reply to Hidden]

Please can you say what diet and supplements. Are you gluten free?

[Hidden in reply to Hidden]

Magnesium +iorn.Keep trying to eat less gluten but fail regularly! Not great at being super strict with my diet but try.Am very interested in Jason Vale and Reboot with Joe juicing diets.They have both made films about how these diets can improve long term health issues.Well worth watching.Both have good web sites with lot's of info .Have felt amazing and slept better after a few days of green juice.5:2 and vegan diets also may help to manage symptoms .....All worth investigating and beats taking drugs for me.All depends how manageable your baseline RLS is when you get off the drugs.

[nightdancer in reply to Hidden]

It depends on the individual doctor. My GP is a champ! She prescribes ALL of my meds and consults with my other 7 doctors. I think you will find that we should not advertise other groups in another group. It is not cool and is not really a good thing to do. And no one should EVER go off a dopamine med cold turkey without a doctor's supervision. EVER. Experts, some of them do not agree how to do this, BUT it is more torture than is necessary. Dr. Buchfuhrer does do it cold turkey BUT with a med, like a narcotic (short term depending on the patient) to take away the heightened RLS that happens when you do that, Then after you get through DAWS (dopamine withdrawal syndrome) the narcotics are cut down in the dose and other RLS meds are tried after you get to your "baseline RLS". See some of your other posts 'advertising that FB group. Any reference to that group has been edited out. I go with what Dr. Buchfuhrer says and there is no reason for the total torture of going cold turkey off dopamine. NO ONE should have to go thru that sloooooooooow torture. I do not se the word torture lightly. A woman in another group has been posting her video journal of her DAWS, and she is a patient at Johns Hopkins and when you watch what she is going thru I would run away screaming, just my opinion. Also, Dr. Buchfuhrer did a webinar on augmentation, and see under the post "Brilliant article" by Carol456, it is the most excellent interview with Dr. B and he explains his methods. Not all "world experts" and researchers agree with how to do this, but there is withdrawal, and then there is "torture". The latter being totally not necessary. It is never pleasant getting off of them, but there are better ways than going cold turkey by yourself, totally NOT recommended by ANY RLS expert. again, just my 2 cents, but I cannot sit by and say nothing.

[Hidden in reply to nightdancer]

It's great that you're lucky enough to have great doctors.That certainly hasn't been my experience.I'm very happy about my decision to come off the Mirapexin in the way that I did.No regrets ad no concerns whatsoever and at no point did I feel in danger or that what I was doing was going to cause me any problems other than a few nights of discomfort which I most certainly experienced.Comparrd to the long term damage and effects of being on dopamine agonists I was more than happy to go through the detox process.

[nightdancer in reply to Hidden]

Well, even though you are GONE now, Moski1966, promoting a group that scares the "you know what" out of people is not good, rules or no rules. We have to give good and responsible information, and newer RLSer's may not realize the implications fully of cold turkey off of dopamine meds. I know several people who thought they could do it on their own and ended up in the ER in a really bad way. yes, all meds have side effects, but that is an extreme and dangerous thing to do your body and mind and brain.

[Trubs]

I would not suggest you go cold turkey. The effect both physically and mentally can be almost unbearable. I was in morphine and decided to come off and even doing it over a period of six months was difficult. Any drug like this should be reduced with the help of a medic and also with your own input. I found that my Dr was happy to take my lead on it. I am still on high doses of Pramipexole (Mirapexin) and also take Baclofen for muscle spasms which, coincidentally, helped stop some breakthrough that I had begun to get on the Mirapexin! The long and the short of it is only stop Pramipexole with the help of a physician.

[nightdancer in reply to Trubs]

never ever go cold turkey by yourself, and one should have backup med to lessen the dopamine withdrawal. It can be brutal and not safe.

[Judy1955]

Janniek I have both ms and rls and the rls was really bad. I take tramadol 100 mgs at night and if I happen to miss a dose well it's not pretty cause it hits me in the middle of the night and I have to get up to take my pills. So missing a dose is not worth it to me at all. The tramadol has been a god sent for me. Have you tried that??

[janniek05 in reply to Judy1955]

Thank you all for your advice. I cut the dose in half and am taking otc pain releivers. So far so good, but I have to stay on top of it. We will see how work goes tomorrow. Both conditions suck. But they are not my identity! Hopefully my Dr. will have a plan, your words are very helpful.

[Hidden]

I gave up promixole cold turkey. I ended up in the emergency room 3 days later and l should have been there that same night. They gave me heavy duty pain killers for night use. I went off of them ands could still eat a lot but my gosh when that narcotic started losing its power, up I'm back on it. Quit the dopamine the slow way.

[nightdancer in reply to Hidden]

YIkes, exactly how it SHOULD be done, after the ER visit. No reason to torture yourself and it is NOT safe to go cold turkey by one's self, which is being suggested here. As YOU know, it is a VERY bad idea without backup. That is what Dr. Buchfuhrer would do. Take you off of it but give narcotics to get through the worst time of it.

[Hidden]

PS -re coming off the Mirapexin. Total lifesaver and normalises what you're experiencing.I clung to it whilst I was coming off the drug and found it to be completely accurate.I did get through the worst in 4-5 nights. My GP had prescribed me some Gabapentin to give me some support.It didn't work and made me feel 'drugged' the next day.I'm afraid the only way to get off Mirapexin is to get through the difficult few days.

[nightdancer in reply to Hidden]

please stop advertising your group here. dopamine drugs are not an addictive drug, your brain gets used to the dopamine, so it is dependency, not addiction. I am sure we have been through this before.

[nightdancer]

janniek what dose are you on of the Pramipexole/brand name Mirapex in the US?

[Pippins2]

To anyone thinking of coming off Dopamine Agonists WITHOUT med back up of a doctor and strong painkillers please see the post of 4 months ago by Catz2 .It is entitled '10 days off mirapex but its been hell getting there'.If you put catz2 into the search box at the top of the page the post should come up

[mlscasey]

I also ended up in ER 3 days after going cold turkey from Mirapex, due to loss of insurance. I was completely out of my head, beating my legs with my fists when my dad called 911 for ambulance. Level 4 restraints and some cocktail sedative left me passed out for 27 hours! I also experienced a mild heart attack, and was in hospital for total of 3 days! They put me back on the mirapex but I was so scared of this kind of dependency that I weaned off of them using gabapentin, which does not have withdrawal effects on me. So, definetly, dont cold turkey.