Pramipexole and serious side effects

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Re: Pramipexole and serious side effects

Post by ViewsAskew »

I couldn't agree more, jakesmom. To me? It's criminal. She really ought to be sanctioned in some way. It's completely inappropriate.

I did the same thing with my neuro. My situation wasn't nearly as bad (no other organs involved), but I didn't have daily WED. I only had it a few times a month, very mild, could always get rid of it with stretching or exercise. I was being treated for PLMs that were ruining my life - I was soooooo exhausted because I hadn't slept more than a few minutes without being awakened for about 15 years. But, within ONE WEEK, I had daily WED. And, like you, I listened to the doc and I took more. And more. THen earlier, then even earlier, then more, until it was 24/7 horror.

I am still mad at myself that I didn't say anything about the doctor. I convinced myself that it was earlier in the research and augmentation wasn't well known or understood....but, like you, I figured it out with some research, so why couldn't have he? And, like you, I went through MONTHS of trying new doctors, spending money I didn't have, being turned down. I waited 4 months to see one of the "best" neuros in Chicago only to be told she didn't prescribe opioids and I just needed to stay on the drug until a new option became available. REALLY?????

Taking off my moderator hat....You sound like you believe in God. I have a hard time with the concept that God "gives" anyone anything. it's antithetical to me that a Supreme being could do that - ah, cancer here, a car accident there.... Consider that life just happens and God gave you the skills, abilities, and smarts to live a full and happy life, whatever comes your way. The power is in accepting how strong YOU are and that you have been given what you need, including the ability to reach out to others for help. You used your abilities to find us, find a solution, use the help that's here, and now to find a way to get what you need. Kudos to you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Pramipexole and serious side effects

Post by Polar Bear »

Jakesmom... I just want to let you know that I am think of you as you work through this particularly nasty time.

badnights and viewsaskew are really knowledgeable regarding the different medications and dosages and I would echo all that they would say.

I also had read with interest the posts about poppy tea and am a little wary about dosages etc. However, I am fortunate in that my medication cocktail more or less works at present..... but (this is not advice just my own thoughts) if I was augmenting, without much in the way of medications, no doctor available of any worth, and if poppy tea was what was available.... then I guess I'd be trying it .... I'd be trying anything.... and I'd dare anyone to stand in my way.... (hands on hips as I speak and stamp my foot !!)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Pramipexole and serious side effects

Post by ViewsAskew »

jakesmom wrote:Thanks !!

How much D-Ribose do you take?

I was reading about the poppy seed tea in another forum. I wonder if I could order both items from the same place?



I can't remember what the dosage in the d-ribose study, but there is a discussion on it in the non-pharm section.

The tea - I think you just buy poppy seeds - a food item - in bulk. Your grocery store will have them and if you have a bulk department, you can buy a pound of them. Or, places like this sell it: http://www.purchasepoppyseedssale.com/

Read up on it before you try it! Like here (and many more places on the internet)
http://www.drugs-forum.com/forum/showthread.php?t=52903

Whatever you do with the tea, try much less that recommended initially and with each new batch of seeds, reduce and try before you drink. Dosages can vary tremendously.

Not to scare....just to remind everyone that this IS a drug: http://www.erowid.org/archive/poppyseedtea/

If I were going to try it, I'd make it per the recipe, keep my seeds separate by batch, and try maybe 1/4 to 1/8th of the recommended amount the first time I took it, adding only until I found the amount that worked. I'd use that amount each time for that batch. For each new batch, I'd do the same.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jakesmom
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Re: Pramipexole and serious side effects

Post by jakesmom »

Day 3 of cutting down from 3 mg to 2.25. Dare I be optimistic, so far so good? Over the weekend, since I am off Monday due to doctors appts, I am tempted to cold turkey for a few days, that way when I go back on it to continue to taper, I will be able to make a dose cut.

I know that means no sleep and much agony, but will it help me in terms of speeding this process along? Will my body then accept a dose decrease? I know I will have to go back on it Monday night so I can work Tuesday. Is this a good plan or one of my dumber ones?

I currently take the usual 1.5 am and I cut my nightly to .75 down from 1.5. If I go without for 2 days, do you think I could drop the am dose to .75? And try that for a week and then repeat that process the following week for another dose cut. If I can get to .5 in the morning and .5 in the evening within 2 months I will be very happy. The more time I can give my body to recover at the lowest dose I can handle will be a good thing.

Again, please let me know if I will be doing more harm than good.

Once again, thank you!!!!!

cornelia

Re: Pramipexole and serious side effects

Post by cornelia »

When you want to stop abruptly for 2 days and get on it again you will never know beforehand how you will feel on Tuesday. Your brain is in a mess from stopping the P and I don't think anyone, not even an expert, how you will fare on that day. If it were me and I had to go to work I would not dare doing this. But maybe others will find this not so much of a risk.
I'm sure we will hear from you how you are getting on. Good luck with whatever you choose to do.
Corrie

debbluebird
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Re: Pramipexole and serious side effects

Post by debbluebird »

Who knows what will happen until you go through it. I'm in the bath tub in hot water when it's bad for me. Plus I used the TENS unit on my legs when I quit cold turkey. I wasn't on such a high dose as you. Good luck what ever you do.

ViewsAskew
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Re: Pramipexole and serious side effects

Post by ViewsAskew »

I don't know anyone who's gotten through it in less than 5 days. Most people (especially when at high doses) find it takes 2 to 4 weeks, if not a bit longer. It's darn hard.

If it were me, I think I'd keep doing what you're doing. But, as others have said, it is very individual.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Pramipexole and serious side effects

Post by badnights »

shucks, late again. I think you should keep tapering; as the others have said, I don't think an abrupt cessation for 2 days will help your body at all. What did you decide to do?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
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Re: Pramipexole and serious side effects

Post by jakesmom »

Yesterday, I decided to hold off on my initial dose until I needed it. I managed to make it until 7pm.

My new GP appt is tomorrow. I know I won't get methadone because she can't write it. I am going through Dr.B's Strategies For Treatment pamphlet and highlighting a few key points.

I think my haste comes from fear. A slow taper won't give me much time to get the drug out of my system. I can't prove my point unless I can say I have been clean from it. My mom has a pacemaker and I don't want one needlessly. But, if taper is my only recourse, taper it will be.

badnights
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Re: Pramipexole and serious side effects

Post by badnights »

why do you want to have it completely out of your system before you see new doctor? I must be forgetting something.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
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Re: Pramipexole and serious side effects

Post by jakesmom »

I'm sorry. No, I need it out of my system by September. I believe it pramipexole is the cause of my low heart rates. My cardiologist agreed to hold off on addressing my low heart rates until then. If I am pramipexole free and the problem persists, I will know I was wrong. I just don't want a pacemaker until I know for sure the problem is my heart and not a side effect of a medication on which I have been excessively dosed.

badnights
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Re: Pramipexole and serious side effects

Post by badnights »

Oh, excatly, OK that's what I thought. I just misread your previous comment.
I think you;re on the right path, and I hope (and think) your cardiac issues will clear up once the pramipexole is gone.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
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Re: Pramipexole and serious side effects

Post by jakesmom »

Lol. I am hard to follow sometimes :)

badnights
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Re: Pramipexole and serious side effects

Post by badnights »

It just might be my following ability that's in doubt :)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

cornelia

Re: Pramipexole and serious side effects

Post by cornelia »

It probably has been suggested by others: the heart issues they found with Pramipexole have not been found with Ropinirole, so if you wanted to you could change to this med.

Corrie

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