Taking the leap

[Hooked77]

Sue Johnson (and anybody who cares to comment), I still haven't jumped in with both feet on quitting pramipexole. I've been on it for 15 or 20 years. So far, I decrease by .125 every other day and take 2 gabapentin, spaced at least 2 hours apart. That's working fine, but I've got to advance. My first problem is I'm scared and my second problem is I work part time. Will I be able to "function" when I have to take more gabapentin and possibly an opioid? Dr. B says he does not think I can succeed without an opioid. I have not contacted my neurologist about prescribing an opioid. Reaching him is something like reaching the saints in heaven. Does anybody have comments on this more personal side of quitting?

[Madlegs1]

Your rate of decrease is guided by how long you've been it and what your current dose is.

The longer and higher the answers- then the slower and smaller the decreases.

It sounds like you are going down way too fast, but if your starting point is high, then you'll be ok for a while.

At some point you will smack into a wall and will have to slam on the brakes.

This subject has been written about loads of times, so if you search, or check the posts on this page, you will find them.

Opioids will almost certainly be necessary for your final few weeks of withdrawal.

Good luck.

[Hooked77 in reply to Madlegs1]

Madlegs1, thank you for replying. As I told Sue, I'm so glad I found this site. It's been a Godsend.

[Hooked77 in reply to Madlegs1]

P.S. My dose is .25 twice a day, so I'm only decreasing by 1/2 a pill every other day.

[Madlegs1 in reply to Hooked77]

I'm not sure if I'm reading Sue correctly. To be clear-- you need to continue your Prami as per usual, but I would only taper down by as small a pill as possible about every 3 or 4 days for as long as your body accepts that regime.

When you get to that stage you go down much slower- maybe 10 days between steps, even, as Sue says , by cutting pills in half. Concentrate on the morning dose mainly at first ( easier to distract during the day)

Don't be afraid to even go back up a step if it gets too awful- let your body dictate the pace.

You will highly likely need opioids coming to the end. The gabapentin as Sue suggests.

Research for a Dr in your area who can help with opioids or even Clonidine.

Drug clinics should help, but I found them useless unless you are an addict.

All the best.

[Hooked77 in reply to Madlegs1]

Thanks, Madlegs1

[WendyBea in reply to Madlegs1]

Hi,I’m not sure if you’re the Admin or not, but I’ve been restricted and am not sure why. Could you help clear this up, please? Thank you.

[Madlegs1 in reply to WendyBea]

Kaarina is the boss!

[Kaarina Administrator in reply to WendyBea]

Hi WendyBea, Thank you for your PM to which I have replied. I have not restricted you and have given you an email address to contact HU direct asking them to sort it out for you.

[SueJohnson]

Reduce your pramipexole every day, not every other day. Since the half-life is only 8 to 12 hours, otherwise it would be almost like going from .125 mg to 0 every other day. If you find the .125 is too much, then cut the tablet in half. Take the 2 gabapentin which you said was 300 mg at the same time 1 to 2 hours before bedtime. There is no need to take them 2 hours apart until you are taking more than 600 mg. You will be able to function fine taking more gabapentin and an opioid. Your problem will be when you are getting down to a low dose of pramipexole and eventually coming off it. Take it very slow near the end. This will be when the opioid will help the most. If it becomes too much, schedule it around a vacation. Your biggest problem may be finding a doctor who will prescribe an opioid in the US. If you have this problem, let me know where you live and I might have a suggestion for you. Don't be scared. You are braver than you think and we are all there with you wishing you luck. Imagine us holding your hand.

[Hooked77 in reply to SueJohnson]

Sue Johnson, thank you so much for your reply. I'm so glad I found this site - the advice is wonderful and it's great to know there are others who have been successful with getting off of this med.

[Slipslopslap in reply to SueJohnson]

Sue Johnson, my comment went to Hooked 77 instead of u!Also my profile ‘Retired Lady’is not being displayed.

[SueJohnson in reply to Slipslopslap]

Contact the moderator about your profile. I don't see your comment to hooked77. Perhaps you could repeat it here.

[Merny5]

Hooked 77, Don’t be afraid. It is not a race. Although I can relate to how you feel because I desperately wanted to get off of that poison as well. My opinion is that you are reducing way too quickly. Your body does not have time to adjust to the dosage change. If you find that your withdrawal symptoms are too severe, bump up the dose, temporarily. I had to do that many times. I didn’t think I would ever be able to get off of the DA. It is not easy, but you can do it! So many people have. Wishing you the strength and courage to eliminate this drug from your body.

[Hooked77 in reply to Merny5]

Thank you, Merny5

[TeddiJ]

Hooked: I was only able to get off of it by going on Methadone. Yes, you can function, but try to stay as low dose as you can. It was actually very easy for me and I tapered down quickly from the DA's over weeks to a month's time. I had to talk my neurologist into this plan at the time and he would only do it short term. I thought my problems were all over and I could then see what natural solutions would work. Unfortunately, I went through a night of withdrawal from the methadone. I was not expecting that after 2 months and such a low dose. I then found another doctor for several months who would prescribe it, then he cut me off, too. There is so much fear with these docs.

I have since resorted to Kratom, which works but it is gross and has its own issues, until I can get the right doctor and the right help.

I spent yesterday afternoon vomiting after a desperate night of trying various drugs and also trying Horizant. My symptoms and that entire night were so awful. (I work, as well, and this whole thing has been quite time consuming.)

Last night I was then forced to resort back to Ropinirole. After all of this hell I have been in for 8 months to get off of it-all the research and time, the doctors, the begging, the phone calls all over the US, the money, the withdrawals and the fear of withdrawal.

I have many posts on this forum about this topic. I agree-every person on here has been a lifesaver!

I just wanted to pass along my good, bad, and ugly. Try very hard to go to a clinic of several doctors, if you do get the opioid. You never want to be dependent on just one doctor-as he or she can and may cut you off with little warning. That is where the Kratom has to step in. Or, you could even start with the Kratom. But do your research first!

The good news for you is that you are already on Gabapentin-adjusting that may help you for part of this transition and certainly after the transition.

[Hooked77 in reply to TeddiJ]

Thanks TeddiJ, It happens that my neurologist is in a clinic so other doctors are available. Your experiences sound horrible. I’m sorry about that. I guess that’s what scares me - the unknown, at this point. Hoping for the best for both of us.

[TeddiJ in reply to Hooked77]

Thank you! That should be great for you-I hope. The first question is: will they even prescribe an opioid? If one doctor does, will all of them? Just a question to ask, now that you know what happened to me.

The opioid will absolutely get you through the transition and will make it easy. Stay as LOW dose as you can. You just need to know the plan for after that phase. Dr. B most often seems to think we should just stay on an opioid. I do finally have an upcoming appt. with him.

If you get the right doctor, Hooked, you will never go through what I have gone through. Don't let me scare you or make it worse. I just felt I should share so you DON'T go through what I did. I never knew I would have withdrawals that quickly and on a low dose-nobody ever mentioned it. I didn't know 2 docs would cut me off.

So, just be sure you get all the information and know what the plan is after the DA to opioid transition.

My doctor knew nothing of the latest research and refused to read it, even when Dr. B offered to discuss it with him and sent the studies via email.

His attitude and ego started me down this awful path.

I think you're going to do just fine!

[Hooked77 in reply to TeddiJ]

You are very lucky to be seeing Dr. B. I have no idea what my doctor will say/do concerning an opioid. I am writing him a letter because he is only in the clinic one day a week and it’s very difficult to get in touch with. It is a clinic in a teaching hospital. You would think they would be right on top of things but I’m not so sure. We’ll see.

[TeddiJ in reply to Hooked77]

Thanks, yes, I have appts. all over the US with the top RLS doctors and his was the first-after a long wait and not knowing what to do all this time. I have seen many doctors here in Chicago during the wait time and before.

I just went to a clinic in a teaching hospital, as well-in desperation, of course. So far they are not up on the very latest nor or they willing to prescribe an opioid. They want me to try Horizant again. So I am struggling with the Kratom and anything else I can get through the night with.

I have another tip for you: don't waste time with the letter just yet. Call the clinic and ask to speak to his nurse. That is one of the best things I have learned to do-they will really help you and answer some important questions! I do hope your clinic is on top of it but if they are not listed in the rls.org centers list-it is not super likely. Though not impossible, either.

[Hooked77 in reply to TeddiJ]

TeddiJ, I will try calling the clinic. My past experience with that has been discouraging as it seems like I had to go through so many people to get to anybody who could talk knowledgeably - and that was not my doctor. I checked the list of "quality care centers" and, no surprise, my clinic/doctor is not on it. The closest will require a trip to Atlanta, not something I'd especially like, but doable. Thank you for all the tips.

[TeddiJ in reply to Hooked77]

Hooked I hear you and this is what I think you should do, after being on your same merry-go-round for almost a year now: call and ask specifically for your doctor's nurse. If they aren't free, obviously leave a message for her or him to call you back. Keep it specific with your request and you won't get that runaround. Some of the clinics even have an option for the nurses line. Every time I have tried to get a nurse, I have done so, or they call me back. They are always kind and helpful, too.Then ask your critical questions, without making and waiting for an appt. 2 months away.

Do not give them a lot of credit or much more of your time and hopes. I've had 2 nurses tell me-"why yes, we prescribe opioids"-only to wait ages for an appt and then find out the doctors won't do it. They are not fully up on the research or they just don't want to do so.

So, once again, I was left with no opioid and resorting to the kratom- just to hang on till the next appt.

Before you even make this call, I would call Dr. Rye in Atlanta and get on his schedule. When I called, I had to wait until mid July. But maybe you will get luckier. Consider traveling elsewhere to one of those centers so you can get in earlier. It will be worth the travel in the long run. Because most likely you will go through what I have.

My appt in LA is not easy to complete at all. But it is the first RLS.org one to come up and of course I am lucky it is Dr. B.

I can tell you that I wish I had not bothered with any of these other myriad appts. all around Chicago. They have taken far too much of my time and energy.

Worst of all, they have taken my spirit and my hope. They are also demoralizing because they question you and don't fully believe or understand-you have to prove everything and fight for everything. All of which is right there on the internet. Or on rls.org.

I have cried many times during and after and in between these appts. Somehow one is made to feel like some sort of crazy addict. I have had some compassion here and there, but not fully.

I remain without help almost 2 months after my methadone was cut off-incredible! All they had to do was renew it-it was already done and proven to work for me.

(The only good thing for me now is that I decided I didn't want to go back on the methadone, and the kratom, right or wrong, got me off of it.)

I know Dr. B and Dr. Rye and all those on that list would never make me prove the facts or question my experience or make me feel so unsupported.

Sorry to go on and on, but just in case I can be helpful to you or others.

[Hooked77 in reply to TeddiJ]

It is helpful. I’m Confident Dr. B will be your savior!

[TeddiJ in reply to Hooked77]

Thank you, Hooked! I just have to get through a couple of more weeks. It is from this vantage point that I can say-I wish I had not put myself through the other appts. at the large hospitals. I was also doing telehealth appts...any rls sleep center doctor I could find. What a waste of time, energy, money; even when I tried to get that important info ahead of time from the nurses.

But, even if you don't keep the appts.-at least make two of the rls.org ones asap to get on their calendars. You can always cancel.

Hang in there and best of luck! It WILL get better. Just don't follow in my footsteps-lol-oy.

[WendyBea]

Hi, I have been able to reduce from 4-5 x .25 mg daily to 2 x .25 mg over a long period, but only by increasing Codeine from occasional use to a regular daily dose. I tried a few times to reduce even further but so far, no luck. I even broke the Pramipexole into quarters so I could reduce to 1 3/4 instead of 1 1/2 pills daily. After about four days of success, my symptoms increased again. I won’t give up, though. I do think the Codeine makes me groggier and slower, but that could also just be old age. I also find I’ve deteriorated in general during this pandemic., so it’s not fair to blame it only on the Codeine. Please look for my post today about the CDC. Best of luck.

[Hooked77 in reply to WendyBea]

Thank you, WendyBea and best of luck to you.

[SueJohnson in reply to WendyBea]

I know it is difficult, but try breaking it into quarters with a pill cutter or better yet ask for a prescription of .125 tablets and break those in half. That way you can go down slower.

[WendyBea in reply to SueJohnson]

Thanks for your advice.

[SleeplessinDenver]

My neurologist had me on hydrocodone for 2 years and then he switched me over to methadone. I guess going from one narcotic to another doesn’t cause the withdrawals. Don’t quote me on that but that’s how it was for me.