Pramipexole

[badnights]

travy

Yes and no....on 4/22/13 it was 52 but I don't want to start on iron again. Sigh.

I was curious, because WED patients usually have to keep on taking it. I thought maybe you had escaped that curse somehow; but apparently not sorry
I posted somewhere else about the iron webinar put on by the WEDF, it really got me thinking about trying to get an iron infusion.
Interesting that vitamin D levels keep dropping without supplementation too. hmmm.

[badnights]

jakesmom,

My ferritin was 40, which she said technically is normal, but it's too low in her opinion and I need to start increasing my iron, Vitamin D and a few others.

the iron men (O'Connor, Allen, Early at Johns Hopkins) say that a person's ferritin is normal at whatever level is needed so that no WED symptoms occur. For one person it might be 50, for another 150, another 250. I LIKE that way of explaining it. (But apparently most hematologists don't get it)

[badnights]

doety
what happened on Monday, did you get to see your neuro?

If you have a video camera, would you mind filming yourself going through withdrawal? I am going to try that when I come off, and if I can get enough people to, there might be enough footage to show in short segments the varitey of ways in which people act when they;re being tortured.

[badnights]

TimG what did you decide?

[doety]

Beth, I pretty much just backed off, and am now taking pram at a lower dose. My intent was to have a "drug holiday." I wish I had been reading Jakesmom before I tried it and I think I would have gone cold turkey. Instead, I reduced the amount I took and didn't sleep for a couple of nights. Then I increased the pram to 1 pill (.25), added either a Vicodin or Tylenol 3 and slept fine. I 'll probably be forced to stop it before long. I'm in touch with my doc and he's willing to give me anything I need, which is reassuring.
I can't imagine how awful a tape of us would be as we withdraw. When I was withdrawing from Suboxone for nine days, I went into a zone. I'm retired, unlike Jakesmom I didn't have the huge problem of trying to appear normal around other people. I would call patient friends and talk like a lunatic. I watched tons of movies, I went swimming in the downstairs pool. Sometimes I'd go downtown (I'm very close) and just wander around....I remember a nice conversation with some guys at a construction site. I would pretend to have a night and day. I took baths and showers all the time. My feet were so sore from walking that I would often crawl around the house, or roll on the floor. I had an I-Pod and music helped some. I know there were times when I collapsed on the floor and went to sleep. I'm divorced now, but when I was married I withdrew from Methadone for about five days. I remember he started calling my friends because he thought I was going to kill myself. I wasn't going to, but I did need help. I'm not sure much of anything helps, but if doctors could tell us what to expect, it might not be so awful -- like "this could take 4 days." That, at least, would give you something to do on.

[veldon7]

Congratulations Jakesmom!! I would like to stop Pramipexole, but I've been on it for 10 yrs, and I take .75 mg evening into night. My Neuro. only gave me Gabapentin the last time I saw him, it helped some, but I still had to take Pramipexole. I could cut back on the Pramipexole, however. but to make it through the night with Gabapentin, I would have to take a larger dose, probably 600mg and up, still may have to take some Pramipexole. I go back to Neuro in July, I am going to ask again about Methadone or Oxy, but from what I've read on this site, it doesn't help some people, or they still have to take Pramipexole. I need to stop the Pramipexole! if I can't get Methadone, or tolerate it, I guess I'll have to start back on the Gabapentin, a larger dose. I also crave pickles and olives, anything salty, thanks for listening.

[jakesmom]

I also had been on it for 10 years. I took 1.5 mg morning and night and my neuro, or should i say my former neuro, thought that was a low dose.

Honestly, if I hadn't had the support from some key ppl here, namely Ann, some very understanding coworkers who carried me and still do some days, precious neighbors who made sure i ate and watched me out walking at all hours off the night and made sure i was safely back inside and doors locked after each trip, and a mom who left me alone to be neurotic and manic, listened to me rant and cry, didnt pester me, just called me each morning to make sure I woke up from the oxy so I could walk my beloved dog; I don't think I would have known I had a problem or my dose was too high, or I was augmenting, or there was a life worth having anymore. I've said it a million times and I will say it a million more, this site and its moderators ROCK!!!

[jakesmom]

Oh yeah, I almost forgot. The drug holiday itself kinda sucks, but it's worth every agonizing moment once you get to the other side.

[ViewsAskew]

I also had been on it for 10 years. I took 1.5 mg morning and night and my neuro, or should i say my former neuro, thought that was a low dose.
... I don't think I would have known I had a problem or my dose was too high, or I was augmenting, or there was a life worth having anymore.

That, to me, is the saddest part of all of this. For many of us, there IS a solution. There are some really tough cases that seem to defy everything thrown at them, but most of even the severest cases CAN be treated.

My uncle, a war veteran who has PTSD, was on 22 kinds of medication at one time. From WED to PLM to heart problems to back surgeries to depression....and so on, he had stopped working and tried suicide. It wasn't successful and it earned him a 3 day stay at a veteran's hospital. A VERY wise doctor immediately took him off of every drug he was on except a couple that were really important. The interactions with all those meds probably wasn't calculable!

At any rate, I often think of him when I hear of people here on many drugs all at the same time for WED. Not saying that they are always unnecessary, but that I'm not sure we always know what is necessary until we take a step back and assess. We also don't know what they might cover or hide. I've been in that boat where I (and the doctor) were just throwing things at it and hoping something would work.

Getting off of them can, I think, help people know where they stand, identify what is truly the problem, and help get people back on track. It only works with a great doctor, though, which jakesmom found out. That is key to finding the life that was lost somewhere along the way.

[Polar Bear]

It's an eye opener to read the previous two posts of jakesmom and Views.
All that medication being thrown at problems until who knows what is causing what... Poor Uncle.
Well done jakesmom

You have rather topped me in my tracks.
Today in particular as I am feeling dead on my feet.
Thankfully my creepycrawly symptoms are pretty much covered but I wonder at what cost.
I am pretty tired, whacked and just plain weary most of the time. My brain is foggy and fuzzy. Yesterday when visiting with someone, that person had to go get me water and tissues because I was so tired that my eyes were streaming and my eyelids were dropping. I felt almost as if I was removed and looking on.

And yet I have often said previously that I don't have any real difficulties with side effects. Is this the meds or is it my insomnia causing the weariness , or is it my fibro ??
Every night/morning its a case of reaching about 4am before I sleep and get maybe 4 or 5 hours which indeed is a great improvement on a couple of years ago.

I use ropinerole (similar drug to pramipexole) tramadol and codeine. Plus other ongoing medications.
As tramadol is considered energizing I am starting to deal with that, I usually take 4 x 50mg tramadol daily and my first step is to try take this down to 3 x daily. First day was yesterday.
I also use a couple of 30mg codeine for breakthrough. If it is necessary I will use another codeine in place of the tramadol I have dropped.
My thinking on this is that generally speaking, codeine is more likely to make you sleepy and tramadol is energizing. So... and tram will be during the day and save codeine for the evening.

This seems like a rather minor step but I don't want to rush at anything.

I am very impressed at how some of our members have weaned themselves off certain drugs.

[doety]

Often, drugs are prescribed and then forgotten (by the docs), I think. I remember Klonopin was the first drug of choice for a while (after the Sinemet disaster). Just a tiny pill, etc. Way after I thought it did no good, I would ask "should I still take that? What if I just stopped it? What does it do?" The doc would always shake his head, don't stop it. Finally, not that long ago, I ran across something on the Internet about interactions with Klonopin and other drugs. I was horrified. I started weaning myself off -- and still it took a year. You get pretty much down to just licking it! Even after that, I had two weeks or depression and withdrawal, life wasn't worth living, etc. Thank goodness I was seeing a therapist at the time who told me I was in withdrawal.

There's a reason drug companies have to list side effects when they do TV ads, even though we don't like to hear them. NOBODY knows what happens when we mix up all those things.

[jakesmom]

Do you guys take any vitamin supplements. I started 1000 mg vitamin C, 1000mg vitamin D, 1000mg calcium, 1200mg fish oil with omega 3, probiotic, multivitamin, 2000 micrograms biotin, and 1000 mg chromium picolinate. Thanks to Topamax, my taste buds have totally changed and I am not craving junk food. Thanks to the above vitamin regimin, I am eating less and am able to hear the "hey fatso, I'm full so stop stuffing" signals when I get full. I still have the crazy pickle cravings, but my doctor thinks its some nutrient imbalance. The only problem is, the salt is making me swell up like the good year blimp.

Hopefully, by the time I go back to the doc to get my oxy taper schedule, I will have lost some weight and by the time I go back to the cardiologist in September I will have lost enough weight to go off my blood pressure medicine.

I know, I know, baby steps. But if you would have told me a month ago that I would be pramipexole, klonopin, Ambien and carb/Levo free I would have laughed in your face. So I am allowing myself a little optimism.

[ViewsAskew]

Do you guys take any vitamin supplements.


I know, I know, baby steps. But if you would have told me a month ago that I would be pramipexole, klonopin, Ambien and carb/Levo free I would have laughed in your face. So I am allowing myself a little optimism.

I have taken supplements and not taken them - I haven't seen any difference for most. I do need vitamin D. But, as you point out, it's hard to know if you have a deficiency and if we don't, taking things don't do anything.

Baby steps - I have to remind myself of that all the time. I spent 30 years putting on extra weight and I shudder to think that it will be next year before it's all off if I lost a pound a week. That seems like FOREVER! A month just to see 5 pounds....but, it all adds up, right?

[Polar Bear]

Supplements - I take -- Vit D, magnesium, calcium. and don't see any difference.
But..... I am not always good at remembering to take them.
Perhaps if I felt any benefit I would have a better memory in their regard, ..... or if I remembered to always take them maybe there would be a better benefit.

Bottom line - yes, it's those baby steps.
Don't we all want instant everything !

[TimG]

I'm still experimenting with trying to substracting pramipexole and use it as needed, that is to say, when symptoms are causing problems that can't be alleviated by other means. I am lucky that my WED is still mild to moderate, unlike the severe WED that many of you experience.

I've been taking Citalopram (Celexa) for three years for anxiety, about a year and a half longer than I've taken pramipexole. It has not caused daytime drowsiness, and I take it at bedtime. I have a strong hunch that pramipexole is what is causing daytime sleepiness. My nighttime sleep quality is usually good, and I get enough sleep quantity most nights. I'm reluctant at this point to try another dopamine agonist, because I haven't experienced augmentation on pramipexole.

I've read a lot about WED, so am knowledgeable about the treatment options, etc. I'm thankful to those of you who moderate this discussion board, and to all who respond so generously with your own knowledge and experience.