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Re: Pramipexole Problems

Posted: Mon Nov 23, 2015 12:52 am
by kjo
I've had RLS since I can remember, probably age 7. Finally found out what it was and was on several different medications before I was put on Mirapex and Klonopin. I've had no trouble with either for over 20 years. Only take the Klonopin when needed. My doctor put me up to 3 mgs a day and I'm getting augmentation. Literally have RLS all day long. Also had an achilles surgery last August which makes it hard to walk so much. Going to my doctor tomorrow and want to know which newer medications you all are taking if any. Really don't want to go off the Mirapex because it's worked so well but in the last 2 years have really had to up the dosage and I guess that's why I have RLS all day. Any help, suggestions, stories from others would be greatly appreciated.

Re: Pramipexole Problems

Posted: Mon Nov 23, 2015 1:21 am
by Rustsmith
kjo, a dose of 3mg/day of Mirapex (pramipexole) is well beyond the maximum dosage the is normally recommended for the treatment of RLS. Normally the max for RLS is 0.5 mg/day and some even are recommending that this be lowered to 0.25mg/day. What you are taking is more normal for the treatment of Parkinsons.

If you read a number of the postings on the discussion board you will quickly find descriptions of the difficulties of getting off of Mirapex. If you search for "drug holiday", that should get you into some of the discussions. This is something that you absolutely are going to have to discuss with your doctor and if he/she is not well versed in treating patients who have augmented of a dopamine agonist like Mirapex, you absolutely must find one. Coming down off of 3mg/day the wrong way can cause significant long term damage to your health. And even getting off of 0.5mg/day has been described by many as "hell".

As for the newer medications, there are two other dopamine agonists, ropinerole (Requip) and rotigatine (Neupro). Given your history, the doctor who treats your augmented state may not want to switch you to one of these similar medications. Another class of drugs that have recently begun to see use are the alpha-2-delta medications made up of gabapentin (Neurontin), gabapentin enacarbil (Horizant) and pregabalin (Lyrica). These medications work well for some and not for others. You would need to try one (or more) to find out if they are for you.

The final class of meds that are currently being used are the opiates. There are a number of meds in this class that are being used by a large number of RLS patients. Unfortunately, the legal environment these days is making it more and more difficult for doctors to write these prescriptions and for patients to comply with all of the legal requirements. This is quite unfortunate because this class of meds is probably the most effective for the treatment of patients who have undergone augmentation on the dopamine agonists.

I hope that helps. There are quite a few discussions that you can find here on each of these topics, from getting off of the dopamines to the pros and cons of each of the alternative meds.

Re: Pramipexole Problems

Posted: Mon Nov 23, 2015 10:19 am
by Polar Bear
Also, something to consider...... have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole.

When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Re: Pramipexole Problems

Posted: Mon Nov 23, 2015 3:39 pm
by JimmyLegs44
Great advice so far. I personally have had difficulty coming off Mirapex at my relatively low dose of .375 mg. It's important to be patient and keep your expectations in check coming off your high dose of 3 mg. Others have done it before, so you can too, but don't expect it to be easy.

You may have been able to get decent sleep as you increased your dose to 3 mg, but at the expense of having symptoms all day long. As you reduce your dose, you will gradually see this situation reverse, where your daytime symptoms will improve, but your nighttime symptoms will become much worse, so expect significant sleep deprivation. Hopefully your doctor will prescribe an appropriate dose of an alpha-2-delta ligand to help cover your nighttime symptoms. Gabapentin is widely prescribed because of its low cost, but there are absorption issues to consider. Horizant is better absorbed by the body, but comes at a higher cost since the generic form is not yet available. Lyrica is also better absorbed and I believe shorter acting than Horizant, and also comes at a higher cost.

Even with a covering agent such as an alpha-2-delta ligand, you will likely get less sleep than you are getting now. I'm currently going through this, and I've been able to reduce my dose from .375 mg to .125 mg over the past 47 days, with the assistance of Gabapentin and then Lyrica. I averaged 7.5 hours of sleep per night before starting my reduction, and I've been averaging 5-6 hours of very fragmented sleep during the reduction. Typically my longest stretch of sleep before awakening with symptoms is 2-3 hours, although this has improved since I switched to Lyrica. The first 5-6 days of each reduction it is more like 1-2 hours between awakenings. I expect it will be even worse when I stop the Mirapex completely. The bright side is that my daytime symptoms have all but disappeared.

One final note...the alpha-2-delta ligands generally take a week or two to reach their maximum effectiveness, so you should start taking the drug at least a week before starting to taper off Mirapex. Your doctor should know this, but mine didn't. I found this out after the fact, and failed one of my drug holiday attempts as a result.

Re: Pramipexole Problems

Posted: Wed Dec 02, 2015 3:27 pm
by slimcool
I am 80 years old and have had RLS since I was a teenager. (I tell my friends _ I had a lot of one time dates because by 9:30 I just wanted to go home and go to bed - most boring date ever!). I did not know this was something that others had until a few years ago when I saw TV ads for medication.

I have it really bad now - sometimes affecting my arms and torso, even. The Doctors have tried klonopin, pramipexole, requip and most recently lyrica. I have the same reaction to them all - devastating muscle and join pain. I have the same reaction to statin drugs.

I had hip replacement surgery in May and had a really hard time afterwards with the RLS causing uncontrolled movement of the legs - which increased pain from surgery. I was put on hydrocodone (10/325) for pain. (I have other issues which also cause me pain). I cannot take too much of it, or I will become very sick. However, I have found that if I only take 2 or 3 in a 24 hour period, my body tolerates it. It actually is the only thing I have found that helps the RLS (and the pain). Most days I only have to take 2.

Has anyone else had similar experiences with these meds? Is anyone else using hydrocodone for the condition? My Doctor says she has never heard of it, but I have read about it being used for RLS.

Any comments?

Sue in Virginia

Re: Pramipexole Problems

Posted: Thu Dec 03, 2015 8:37 am
by badnights
Hi slimcool. Lots of people take hydrocodone for WED/RLS. I take hydromorphone, which is stronger. (Actually, hydromorph contin which is the long-acting version) Other people take codeine, which is a bit weaker. There are a number of opioid medications out there, and they all relieve WED/RLS symptoms. Your doctor seriously needs to do a bit of easy reading, because it's common knowledge. There is a reluctance to prescribe opioids for anything these days, but people with RLS/WED have less problems with addiction than the general population does, and many of us have been on a stable dose for years.

I recommend you get the Foundation's Medical Bulletin, which you have to be a member to access but membership is cheap and believe me it;s worth it just for this bulletin! See for a description (it's way at the bottom, in the ""for healthcare providers" section). IT you become a member, you can download it under Members Only - -Publications.

Also I recommend this paper : follow the link below my name at the bottom of this post. You will come to a post that lists a numbe of excellent resources. I recommend you get Buchfuhrer's 2012 paper (third one down).

Read either or both of these yourself, it may be an eye-opener. Then take a copy to your doctor. Say you found this while researching your condition, and would like his/her opinion on it. It will help if you have highlighted one or two sections that you believe are relevant to your situation, so the doctor can focus in quickly in the small amount of time available in most appointments.

Re: Pramipexole Problems

Posted: Sat Dec 05, 2015 8:42 am
by ViewsAskew
What badnights said!

Re: Pramipexole Problems

Posted: Sun Jan 10, 2016 9:05 am
by Greenhillstraveller
Hi, I am new to the forum but would like some advice on Pramexole at low doses. I only take it when I cannot get to sleep aft a couple of hours. My RLS seems to be random and only at night. So I used to take a 3 mg tablet and cut in half. I sleep well and are not too tired the next day. I seldom take more than two nights in a row and that dose lasts several days, a couple of weeks max. But my Doctor, and Chemist confirmed, the 3 mg is no longer available. I have tried the new packs of 1 mg, with tablets that are much larger, and had terrible reaction - almost instant vomiting till completely purged. And cannot stand with the dizziness. Never had this before! Not convinced that the new tablets are safe. Feel like they are 10 times too strong.
Also tried the Extended release (ER) form in 3 mg and that really made me sleepy, like 24 hr sleeping and nauseous.
Should I be asking Doctor for a different drug, preferably something very mild?

Now something I thought of - if the tablets for RLS are to control the muscles in the legs, and the brain is said to be one big muscle - will the medication help to switch off the brain muscle and solve insomnia? I just need an " off " switch sometimes.

Re: Pramipexole Problems

Posted: Sun Jan 10, 2016 9:28 am
by Rustsmith
Could you confirm that the medication you are taking is pramipexole (Mirapex) and not ropinorole (Requip)? The pills for pramipexole normally available from 0.125 mg to 1.5 mg and the max. recommended dose for RLS is 0.25 or 0.5 mg (depending on who you ask). For ropinorole, the size of he pills runs from 0.25 to 12 mg with the max RLS dose at 1mg.
As to your problems with the lower dose, you should ask your chemist whether there is something different in the other chemicals in the new pills- possibly something that you are allergic to. With the use of many generic sources of drugs, some suppliers use different fillers than others. There have even been issues with varying quality between generic suppliers of drugs for problems other than RLS.
Whatever it is that you are taking, if the new pills are making you sick, then YES you should be talking with your doctor about taking something different. Whether this means switching to a different medication or trying to get your prescription written so that you get a different supplier of your medication is something that your doctor will need to help you with.

Re: Pramipexole Problems

Posted: Sun Jan 10, 2016 11:16 am
by Greenhillstraveller
This is Pramipexole HCL 1mg which has Apo-Pramipexole hydrochloride monohydrate written on the tablets.
I thought it was Sifrol, but there is no mention of any other name on either the packet or the blister packs.
Does this mean the rate is far too high?
I did not get a lot of satisfaction from asking the chemist the details of what they added to it. No interest was shown in
finding anything more for me. I will go back and be more insistent, but they don't make you feel comfortable asking.
The Doctor did not offer any other suggestions either.
Thanks for your help.

Re: Pramipexole Problems

Posted: Sun Jan 10, 2016 6:39 pm
by ViewsAskew
We try hard to keep up on the different names of the drugs - one of the reasons I try to remember to use the generic name when possible. Each country not only has different laws regarding drugs, but different approved drugs, and in different doses!

Since pramipexole is used for Parkinson's, there are larger doses available. Our doctors shouldn't prescribe these larger doses to us - as we need MUCH less to work! In the US, there are a few "cutting edge" doctors who study RLS and treat many patients. They have been saying - for a few years - that the highest dose of pramipexole we should take is .25 mg.

Do ask your doctor for a blood test - both serum ferritin and hemoglobin - serum ferritin should be MUCH higher for us than the rest of the population - at least 50 and preferably 75 to 100.

Also, since your symptoms are not daily, it's likely not nearly as helpful to use pramipexole as it is another type of medication. It takes 60-90 minutes to work. It also doesn't work as well if you take it after symptoms start. IF your serum ferritin is at least 50-75, you might want to use a faster acting drug - carbidopa/levadopa. It should never be used more than 3-4 times a week, though. And, it should be used at a relatively low dose.

Opioids work well - and often within 30 minutes - too. But, they are hard to get. There is new research in the EU about using opioids and I believe a formulation was approved in the UK just last September. If you are using them just a few times a week, a doctor might be more open to prescribing them.

Re: Pramipexole Problems

Posted: Tue Mar 01, 2016 11:44 am
by Pedantic
I used Pramipexole for a number of years, increasing the dosage and number of times (Under a doctor's care) and in the end I started having "nap attacks" where I would fall asleep in a moment's notice at any time. I have this hilarious incident where I spent two hours attempting to write out an email, but each time I got a paragraph written my head would slam down on the keyboard, erasing the text and no amount of CTRL-Z would bring it back. After the two hours were up I gave up and called the person for whom I was writing the memo. I also got nap attacks while driving, and that was scary. After intervention by an angel of mercy the docs finally shifted me to a combination of Ropinerole, Clonazepam and Carb/Levo, and this cocktail is simply not reliable. I have good nights but just as many bad nights. I am fairly certain that my nap attacks along with my grogginess is why I was laid off, though the company claims otherwise. Having been forced into retirement, I now live with a quarter of the income that I used to make and until I can get a handle on my RLS my situation is not likely to improve much.

Re: Pramipexole Problems

Posted: Tue Mar 01, 2016 2:09 pm
by Polar Bear
Pedantic - the nap attacks are a listed side affect of Pramipexole though I've never experienced them myself.

So, at present you are taking Ropinerole, Clonazepam and Carb/Levo.
Carb/Levo is not a drug that you should be taking regularly, it has a very high rate of causing augmentation.
Indeed Pramipexole and Ropinerole (DA medication) also is known to sometimes cause augmentation which is when the drug actually causes the symptoms to worsen. Some relief is at first gained when the DA medication is increased but soon it needs increased again. Has your present doctor ever discussed augmentation. Also be careful how high a dose of DA you are taking. At present it is reckoned that 1mg Ropinerole daily is max. (Unfortunately my dosage is well over that from the days when 4mg daily was considered ok).

This book is wonderful, it is easy to read and can provide great information and be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us. I am very happy that at present my ferritin is at 157.