Coming off pramipexole.. Is it possible!

[Sherri777]

I was told a few months after being put on pramipexole that I could never come off the medication. It appears to be true. When trying to cut down the tiniest bit, my legs start kicking violently and a couple of hours after that, my arms start punching in the air also. These symptoms are the most hideous symptoms I've ever who. It's impossible to even urinate as you can't stop your legs from kicking. The doctor didn't tell me I couldn't come off this drug until months after I was in it. Does anyone else know about this and what have you done with to deal with this. Thank you.

[Madlegs1]

What dose are you on?

I was on it and came off it ok after a year. I was on .18mg. Am now on oxycontin.

Good luck.

[Sherri777 in reply to Madlegs1]

Thank you. I'm on .75mcg

[Madlegs1 in reply to Sherri777]

Ok- that is a high dose and will take a bit of time to get off.

Others here have given good advice.

Taper down by .o88 every thre or four days- using what others here have mentiond.

You will do it.

Check out Matt Finch site which will give you some ideas to help.

Good luck.

[Sherri777 in reply to Madlegs1]

I cannot taper down. Thank you

[Madlegs1 in reply to Sherri777]

I am at a loss as to how to treat you. You have had the benefit of the best advice possible over the last few days and seem not to be taking a blind bit of notice.

I appreciate you are scared stiff of moving off the Prami. But you are on the high board and there is nowhere else to go. You can stay where you are and the pain will get worse (Augmentation) -or can start tapering down very gradually, suffer pain (Withdrawal) while doing it , but get better in the long run.

Others have described their experiences and remedies.

Diazepam , Clonidine and Ambien are all good helpers. Plenty of vit c.

Staying put is simply NOT an option.

I will not be participating in this thread any further--- so I wish you, very sincerely , all the very best in your future decision and actions.

Oh- and give Raffs a big hug-😉

Cheers.

[Sherri777 in reply to Madlegs1]

Excuse me? What makes you say I haven't taken any of this advice? I have Dr appt coming up for this specific situation here. Unfortunately I cannot write myself a prescription. I don't understand.

[Sherri777 in reply to Madlegs1]

What an unprofessional, hurtful and inaccurate response to. So happy I not good enough for you. How callous and inconsiderate of you to say I haven't taken any advice as if you know my life circumstances and the steps I've taken to come off this medication. Obviously this is not a very professional site. Thank you and good-bye. Guess you get off on the hurt and pain you cause others. I'm greatly sorry that the 7th tumor in my head has taken prescendence over my kissing your butt. Goodbye

[Hidden in reply to Sherri777]

Who are you having a go at now. ! ?

[nightdancer in reply to Sherri777]

We have been giving you the BEST advice that we have. You asked the question if it is possible to come off this med, and we said it is possible, with the right kind of help. We are ALL sleep deprived here, and so are you, so let's remember that. This group is a good group. It is a group based in the UK, so maybe you would prefer a group based in the USA? There are several good ones on Facebook I can vouch for.

[nightdancer in reply to Sherri777]

We have dealt with many, many people dealing with this issue, Sherry. And, what madlegs is telling you is correct. We have heard a million times people saying they "cannot taper down". Well, you CAN taper down, and it is not fun. But, there is no reason to be on this med for the rest of your life, because now, because your dose is too high, eventually the RLS is going to get worse than it is now, and it is possible to get off this class of meds. Cannot believe a doctor told you that you would be "on this for life". In my groups, we have had hundreds, and here also, that have come off the dopamine meds, and it is worth the withdrawal when you get down below the very high dose you are on. you have nowhere to go with the dosing, you cannot go up, so the only way to go is down. You asked if it is possible to come off this drug, and we are saying yes it is possible. Usually, a med to help with the dopmine withdrawals, an opiate in most cases, is necessary. It needs to be tapered down sloooowly. Your brain is going to miss the extra dopamine, so your symptoms will get worse before they get better and they WILL get better. The mistake your doc made was to keep upping the dose. Put augmentation into the search box here and you will get all kind of info, but you have some very good replies here. We are NOT saying it is easy but it is worth it in the end. Just being really honest here, as I assume this is what you would like is honesty.

[Carolsue99 in reply to nightdancer]

Help me please!!! At age 12 my creepy crawly legs started. I never realized my dad, who walked the house at night, my aunt did the same thing. Now I find out I have 4 cousins, one sister, one niece, both my children and my only grandchild all have this AWFUL disease. We , most of us have been genetically tested and we have the ATM gene disorder. I am 66 now, I have been taking Mirapex ever it came out. Well over 20 years. I take 2.50 er Mirapex for the last few years. I have gambled away close to $150000 dollars. I have tried multiple times to get off Mirapex. Fail Fail Fail. The last time was close to deadly. Help me!!!!! I fell three days ago because I was tapered off Mirapex nightmare. Three weeks of hell with little sleep. Prescribed 609 mg of Horizant. Took 2 a day for two weeks, still no 😴 sleep. Pain pain Pain Then the neurologist added acetaminophen w/codeine. My legs went off the charts. Walking ing didn't even help. We are now 5 weeks of no to Little 😴 sleeping 😴....Then he prescribed Buptofin?? One to two three times a day. First day I passed out and fell causing a severe concussion. Lucky I'm not in surgery tonight, I've been married for 48 years. Probably will divorce divorce me. I need help!!!!!!

[Carolsue99 in reply to Carolsue99]

my typing is awful. I apologize.aoologiz. I forgot to say I take 600 mg of gabapentin regular with my Mirapex er. Before I tried getting off it and Mirapex er and going to Horizant

[LotteM in reply to Carolsue99]

So sorry to hear this. Read Sue recent and many replies. But better copy this text in a new post of your own, as that will generate more attention. You have now replied to a 7-year old post.

In short, coming off the Mirapex you’ll have to go slow, a small amount (0.125mg or half of that) every two weeks at most. But wait until symptoms settle enough, and that may take a bit longer. Also, you may need help of an opioid temporarily during this process. Usually tramadol or oxycontin. Methadone and buprenorphine are preferred, used longterm and in a small dose once off the Mirapex.

Do check out the Mayo clinic updated treatment algorithm: mayoclinicproceedings.org/a....

Also, it seems that you are in the US do check the very good rls.org . It is worth becoming a member.

[Hidden]

That is BS we can stop any drug. You will need to wean off it and start another drug say Tramadol which will help. In saying that I was on it and then stopped it cold turkey as the side effects were too bad for me. I would consider moving to a new Dr if I were you.

[Sherri777 in reply to Hidden]

It's far from b s. I go through severe with drawal. My legs and arms kick violently and uncontrollably. And don't talk to me that way. You're no doctor and you don't know my medical situations

[Hidden in reply to Sherri777]

I was making the statement with regards to the misinformation you were given, there was no comment on you or your medical condition, but if you can point out where I did make a comment about you I would be happy to apologise!

AND I stand by my original statement, if that drug was discontinued, then you and everyone else would be stopping it.

I urge you to read my post again and see who exactly I was getting at, (Big clue, I told you in the last sentence of it).

Again I ask you to point out where I made ANY comment about you, I was trying to advise you in a more positive manner than your Dr.

[Hidden in reply to Hidden]

Allow me to vouch for Raff's bad character. He is a "medical establishment" hater not a member hater. He is so tired of doctors, and the like, who don't know crap about crap, telling their patients what they can and can't do. So in affect, Raffs is saying that he has all the confidence in the world in you and your ability to stop an RLS med and no confidence in the medical professional who told you that you can't. Hey, since I'm budding in, allow me to plug iron in the form of ferrous bisglycinate. One 25mg capsule of the ferrous bisglycinate on an empty stomach at night on an empty stomach and my RLS is gone for the night. Those of us with RLS have anemic brains, not bodies. So by sneaking my brain some iron at night I don't suffer. But it must be repeated with each attack or should I say every night...NOT DAY. $6 on Amazon. If you like it after a few nights get your doctor's approval. As you're withdrawing it might very well take the edge off until your dopamine receptors get back to homeostasis.

[Hidden in reply to Hidden]

Thanks tredlight, I had thought that I had made that obvious form my post, (and nearly every other post ) so glad it was!

Can I also +1 on tredlight's Iron, I found it quite beneficial.

[nightdancer in reply to Hidden]

I am glad it is helping you, raffs. I cannot keep up with you, but hope you are getting some relief. Seems some days nothing works for you. many of us are sick of doctors, who are a necessary thing for most of us. Mine is an angel, so I have no personal issues with mine, but so hear about some doctors who need a bit more education, a LOT more education. As always there is more than one side to any story.

[nightdancer in reply to Hidden]

oh there you go again, tredlight. iron cannot hurt her, but we are talking about dopamine withdrawal here.

[Hidden in reply to nightdancer]

See Bganim's posts

[nightdancer in reply to Hidden]

have read them, thank you.

[Sherri777 in reply to nightdancer]

Yez

[nightdancer in reply to Sherri777]

Dopamine withdrawal is not fun or easy. But, you asked, Sherry777 , if it is possible to come off pramipexole and we have told you it is possible. It is a process, but the direct answer to you is YES, it is possible. As I said before, we know many people going thru it now, and in the past. I have been managing USA groups for 21 years and many people have managed to come off the dopamine drugs.

[nightdancer in reply to Hidden]

That is what we are saying, raffs.

[Hidden]

Sherri, it is possible to come off the pramipexole. Many have done so. When you try to cut down even the tiniest bit your dopamine receptors will complain as they have got used to all the dopamine. To help to over come that, which is actually withdrawals you are having. then you need to ask your doctor (if your doctor Knows ANYTHING about it) for a strong pain med like tramadol, that will help with the withdrawals, while you wean down very slowly off the pramipexole. I am asking the same as madlegs what is your dose of the pramipexole. ? If your doctor is not helpful with this then is there another one in your surgery you can see. If you are in the USA then change doctors.

[Sherri777 in reply to Hidden]

No the physicians around here I wouldn't take an animal to. My legs and arms kick violently and uncontrollably. I can't even sit to use the bathroom. It's hideous. I'm going to keep trying different doctors. Thank you very much

[nightdancer in reply to Sherri777]

Your arms and legs are "violently" moving, you are augmenting on the Pramipexole. You can NOT up the dose, so we are telling you from years of experience what needs to be done next. The med that used to help you has TURNED on you.

[Sherri777 in reply to nightdancer]

Yes it's been horrible. Thank you

[Sherri777 in reply to Hidden]

Thank you. I'm seeing a doctor soon. I appreciate the advice

[RegBlunt28]

Yes Tramadol let's me be a normal person.

[Sherri777 in reply to RegBlunt28]

How long do you have to be in Tramadol before you're off the pramipexole o is it for ever? Thank you

[nightdancer in reply to Sherri777]

There is no answer to that, but the pramipexole is now making your RLS way worse. The only way you are going to get over that is to get off this med by tapering, and hopefully after the withdrawal period, which can be a long one, then you will see what your RLS symptoms are like. It is different for everyone as far as length, but RLS is for life, for now, so it really depends on how your symptoms are AFTER withdrawing. That is the only answer right now, is that your dose is too high, that is your doctor's fault, not yours, but now you need to advocate for yourself, and it is not going to be fun, but it is never going to calm down as long as you are augmenting. ( augment literally means the "worsening of something" as in your RLS)

[ookla]

The "easiest" way to get off is to slowly taper down while using a better med at the same time. Don't decrease the pram on its own. Add tramadol or oxy if you can.

[Grammieof4]

My doc had told me I could "just stop taking it" because I had only been on it for 3 weeks. She was so wrong.

[macewan13]

Hello,

I hardly ever post here but am grateful for all the advice and knowledge. Like the others, I came off Pramipexole because I had permanent nausea. I did it slowly with the help of Cocodamol.

I have since discovered Tramadol as a result of a shoulder operation. It really works for RLS.

Hope you get some relief

[Benzanax]

Was on them for 2 months then went straight on to pregablin no problems

[Grammieof4 in reply to Benzanax]

Lucky you. Seems everyone else has terrible withdrawal. Were you taking any pain meds at the same time? I was/am not.

[Benzanax in reply to Grammieof4]

I was on diazepam dihdrocodiene dhc 600mg also Amazon and eBay buying stuff I did not need when on them

[Grammieof4 in reply to Benzanax]

That's why you didn't have trouble.

[nick-the-turk]

HI in the process of coming of this med and it is hell but i live in hope that next med will do the trick and give me some relief

[Pippins2]

Yes i came off Pramipexole it took a few months and strong painkillers to do it but yes it is certainly possible with back up meds x

[stan38angler]

i came off pramipexole yes it was hard it took me 3mths to get off now on 3mg patches

[involuntarydancer]

Coming off pramipexole will be extremely hard. You will have terrible symptoms. They will be helped somewhat if you can get a prescription for strong opiates but you would do well to expect 10 to 14 days of absolute misery even if you get the opiate. DO NOT LET THIS DETER YOU. It is vital to get off the drug. Your condition will only get worse and worse and you will have a more significant withdrawal period if you defer it.

[Hidden]

Still not heard back from the OP regarding their reply to my statement, I'd like to hear your views if you would be so kind?

[Sherri777]

Thank you everyone for your great advice, caring and help. I look forward to being off this medication.