went for my annual m-o-t this morning,with the nurse. ok. then to the doctor for an injection in my knee,the main doctor at the practice. we do not normally go to this one. he was on the computer when i walked in, looking at all my medication. he started by telling me i was on too much pramipexole and that he was reducing the dose. also, that i was to take the tablet one hour before going to bed. i explained that it only works the way i take them after a long time experimenting . his comment was that he was not interested in how i had been taking them, that the dosage was too much.....
he then asked if i wanted the ugly thing removing from my forhead. a mole that i have had for 74 years. my reply was no.it was no problem.
he then decided to ask me what i was there for??
i explained that i was booked in for an injection that only he was alowed to do. his answer was that i should go to the hospital and see if they will give me an injection.
Many many who suffers from RLS are on much to high doses. It takes two hours for pramexipole to give effect. Good luck!
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hi swedish, well, only two hours sleep last night after leaving off the midday pramipexole. had two tablets two hours before going to bed . mild rl all night. started with one pramipexole 88 mg seven years ago. my dose for the past three years has been three pramipexole 0.18 mg, and that works quite well. i do not know the new dosage until i have my new prescription.
regards, pete.
• in reply to
Maximal daily dose is 0,54 mg but it is best to stay around 0,36. Do not go to fast down or you'll get abstinens. It can bee enough to take away 1/4 pill every 3-5 th day. Good Luck!
hi annakalia, i have not received my new dosage yet from the doctor. but in the meantime i have tried his recommendation and have left of the midday tablet. and taken two . two hours before going to bed. felt better for three days, did not feel drugged or sleepy. wide awake until 02-00 in the morning and then sleeping for four hours. suddenly i have had a bad night with rl.
legs played up all evening and through out the night. had two hours sleep after 06-00 am. felt terrible all day.
yesterday i reverted to my normal dosage at my normal times and slept solid for ten hours.
TEN HOURS SLEEP.
regards, pete.
Blimy, he sounded like a fun doctor....NOT. Good luck tonight with that reduced dose, if you sleep it will be a miracle, as reducing the dopamine will usually result in the dopamine receptors objecting to less dopamine. What is your pramipexole dose now he has reduced it. And Swedish is right , should take 2 hrs to kick in not one hr. My doctor has let me dose myself knowing i know my body better than he does. As long as i stuck within the recommended dose, and i played with the timing that suited me. So, that meant splitting the dose instead of taking all in one go.
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hi elisse, it was a consultant neurologist who put me on pramipexole seven years ago. i had to inform her when i reached a level of medication that worked for me. the timing was also experimental. and it has been succesfull. it took eighteen months to settle on the dosage.
sleep pattern is four to seven hours, which i cannot complain about. if i forget the midday tablet then i know all about it next morning.
keep taking the tablets, pete.
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Hi progress, just seen what your dose of the pramipexole is, prior to the reducing. It is quite high, but was working. Because of augmentation is such a high topic in all groups these days, he may know that, and hence him wanting to reduce your dose. Whether this will work for you by him doing this, is debatable. You have already experienced the bad night by just stopping one pill. I could be wrong, and your body MIGHT settle for the less dopamine, but i doubt it. The end result could be you having to come of the Pramipexole altogether. The new recommended dose for Pramipexole, is now to take no more than 2 of the lowest dose pills, because of the augmentation. Let us know how you get on with the reduced dosing.
What a mean man. I dropped one pramipexole myself, but got some oxycodone to help get through it and also did it every other day. I do think you need to take another drug to compensate for the loss. Also i find taking one pill at 7pm before my RLS starts and another x2 hours later avoids the "mule kick" that these dopamine drugs can give you. Best of luck and keep us informed. Caring and sharing, it all helps I think.
I'm also cutting down on Pramipexole because of augmentation. I don't do it every night - I still take it, at a reduced dose, when I have work or another reason to be awake the next day. On other nights (plenty of them over the Christmas break) I just take the cocodamol my GP gave me to help. The effect is dramatic - nights are awful when I don't take Pramipexole (the cocodamol is next to useless) but my afternoons and evenings are so much better now that I'm willing to put up with the bad nights. It's as if the Pramipexole cures my RLS at night but actually causes it during the day.
IPtilium , as you are trying to cut down on the Prami I wouldn't stop and start taking it as each time you stop you are having withdrawals. Then you take it and the whole process again
Hi Pippins, I think of it as a drug holiday. I can't put my life on hold to take a proper drug holiday of several weeks and I don't want to swap to another drug since Pramipexole still works at nights, and better the devil you know.... But a very short drug holiday makes all the difference to my days - after three nights without Pramipexole I was able to sit on my daughter's bed chatting to her for two hours. Before that I couldn't have sat there for five minutes. So it looks like a week without Pramipexole every so often will let me keep using the drug and also beat the augmentation problem.
Ah I see,didnt realise you were taking a week or so occasionally off prami yes that helps prevent augmentation so a good idea.Imagined you on it one day ,off the next then back on next.Not getting chance to be on forum for long to read everything ,my new puppy has put an end to that! Good luck
What a stuck up B****RD! My good how presumptuous that he believes he not only knows more than you but more than all the other Dr's!!
When I took Mirapexin it was as progress3 described I was to work at a level where I got relief that was deciding the correct dose and the correct time for me to use it. Yes as humans we are all very similar but our individual make up means that what will work for one, or indeed most will not necessarily work for all.
I would complain that this man interfered with a regime that was bringing relief and has caused you more pain/suffering. Its not as if dopamine agonists are renowned for their abuse potential and since you had been taking that dose for a while it looks like you may be one of the lucky ones that don't experience augmentation, (I have and it has made my life worse).
The Dr may be right in urging caution on dose as the side effects of this drugs are in my experience horrific and not something to be entered into lightly. I have been suffering with very severe RLS this past few months and yesterday a Dr at my practice, (not my usual GP) offered Pramipexole but understood when I point blank refused after my earlier experience.
I hope you find relief, maybe look at some of the other threads on here and if you are lucky enough, (and sensible enough) there are other drugs that can be used such as opiods, (risk of addiction and dependence although I have found them to be very good with minimal side effects for me), cannabis (strain dependant and also dependant on where you live you may get crap cannabis or the illegality can be off putting - limited scope for addiction although avoid nicotine if you are having it in joint form) and Kratom (is illegal in some parts of the world not US/UK it is a mild natural opiod but with limited potential for addiction and little side effects).
You sound as if you have had enough riffs,I went from tablet to tablet but. Now on Tramodol why don't you see if your doc will give you those thy are working great for me good luck
hi beady3, tramodol makes the room spin. i avoid them at all costs. the lower pramipexole dose does not seam to have any adverse effects, yet. i dont feel so doped up.i am not falling asleep any time i sit down. maybe it is a good move, we will see. pete.
Pete did the Tramodol make you sleepy I am like that drop of to sleep when I sit down I don't like it thought maybe I was getting old,it's the lesser of two eve ills have super nights with tab and sleep or up all night am pleased how it's going at the min x
hi beady3, i dont take tramadol at all, for any reason. when i did take them some years ago i would wake up in the night with the room spinning around and i was having to hold on to the bed. i refused to take any more.
i had ten hours sleep last night ???????? see my new post. pete.
Hi beady3, I've been on Tramadol up to the maximum dose of the quick release but then managed to stabilise on 150mg twice daily of extended release. For the first couple of years it was fantastic but the efficacy waned over the next year or two and I came off it hoping that Gabapentin would be better...it wasn't
I stopped cold turkey and after 6 years of use it was a rough ride. I have been referred to a pain clinic, (only have to wait 8 months or if you are in a lot of discomfort that is 243.5 days or 350,632.511 minutes even 21,037,950.6 seconds when the legs are really bad!!!).
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This and That RLS
NO ANSWERS FROM DOCTORS
My 90 year old mom had RLS during the month of June 2017 and she no longer has it.
Off to doctors
Met Dr Diego Garcia-Burreguero
