Augmented on Pramipexole

[Rustsmith]

It finally happened. After almost nine months on pramipexole I started to augment about two weeks ago. I had been taking 0.375mg/day and that had my WED under control. But two weeks ago I had to move my half pill to earlier in the day and then had to move to a full 0.5mg/day (0.25 twice a day).

Then last Saturday night it got really bad. I was a bit late with both doses due to having to attend a company party. I was doing great with no signs of WED until I laid down to go to sleep. Within 5 seconds I went from no symptoms to very severe "I have to get up and start moving". Both my arms and legs were in constant motion. In the past I have been able to use the computer distraction trick at this point. But that didn't work because my legs were moving on their own under the desk and I could barely keep my hands on the keyboard to type. I finally realized that I had to get out of the house for a walk at about midnight. So I ended up walking around the neighborhood so I could keep using my legs. I was able to get them calmed down after about an hour so that I was able to get to sleep around 1:30AM. Of course I then woke up "naturally" at 5AM so that I could meet friends for our normal 10 mile run on Sunday morning.

Fortunately, I already had an appointment with my doctor today (Tuesday). The next step is to try the Rotigotine patch for a week to see if smoothing out the DA levels with an ER product improves things. I am not convinced this will be a successful fix (for now), but I will give it a try to make the doctor happy. Maybe it will work. We will see. If not, it will be back to the doctor next week.

[ViewsAskew]

We don't have a lot of data regarding switching to rotigotine. As you do, I am not all that convinced it will work, but I hope it does. Switching from ropinerole to pramipexole (or vice versa) rarely works when someone is augmented severely. It seems to work better when it's a very mild increase. But, since the patch keeps levels in your body at all times, it's believed it will not act the same.

Sorry you augmented. It isn't any fun.

[QyX]

Wow, you managed full 9 months without augmenting. I would say this is something! I never was able to take Pramipexole for longer then 4 weeks. Now I can only take it for 3-4 days before I start augmenting. Of course I tried swichting to other DAs but that didn't help. On Ropinirole I augmented on day #1.

Good luck with your Rotigotine experiment but I must say I'm not very optimistic because the patch works like 24 hours and so you have DAs in your system when you likely not need them. Meaning it will increase your tolerance in hours were you do not really the medication. It might work for some days or maybe even weeks but I wouldn't expect more. I also wouldn't be surprised if you start augmenting from day #1.

After over 2 years of struggeling and fighthing with dopamine agonists I decided to stop them completely and never take them again. If you have augmented once it will likely happen a second time and then every time faster and faster.

My alternative is Carbamazepine as a base line treatment and for the pain I take opioids.

I wish I would have tried Carbamazepine earlier. It is the first drug that allows me to sleep without causing drowsiness, dizziness or tiredness.


Good Luck!

[Rustsmith]

It has been a week now that I switched over to the Rotigotine patch. So far I think that I like it, but I will withhold judgement for a bit longer.

Part of my problem was that my WED existed in my arms, body and legs even before I started taking pramipexole. The symptoms in my arms and hands would start in the late morning and get worse as the day progressed. Before my first dose of pramipexole I was attributing the feeling to one of some unknown cause of nervousness. It was that first dose that made me realize that the WED was in my arms and chest as well as my legs and abdominal muscles. So the first sign of augmentation on pramipexole and my warning signal that I needed another dose became a nervous feeling in my chest and hands. But it was only when my legs and abs starting causing problem with sleep that I accepted that I had to change.

The transition from pramipexole to a 2mg rotigotine patch took a week. It went well except for the day that I prematurely discontinued the half dose of pramipexole while I was still only at 1mg of rotigotine. That night gave me an idea of what may happen when I finally have to give up DAs.

But now that I am on 2mg of rotigotine and no pramipexole (note that I also take 600mg/d of gabapentin for migraines), I have been mostly symptom free. My doctor thinks that this is due to evening out the dose through the day. I don't get the highs and lows as the dose of DA decays and then goes high again with the next pill. All that I know at this point is that I haven't felt the nervous feeling for a week now and the only WED issue that I have is that occasionally I will wake up about 3 hrs after changing patches with leg cramps that move between various muscles in the hamstrings and calves of both legs. The cramps respond to stretching, so I can usually go back to sleep after about 15 minutes of aggressive leg stretches.

I also received an update on my ferritin levels. When I first started treatment nine months back my level was 43. Now after 9 months of 65mgs of FeSO4 2x/day with 500mg of VItamin C on an empty stomach, I am at 246 and can get off of my morning and afternoon "appetite suppressant" pills.

Finally, I found a reason why I need to do everything to try to stay away from the opiates. Next month I am going to the USATF Masters National track meet to compete in the middle distance events. As such, I am subject to random drug testing just like the professionals. I checked and the DAs are all legal. The same is NOT true of any opiate. All are 100% banned probably, because they could be used to mask the pain from minor injuries. If I were tested and found to have traces of MJ or any form of opiate, I would probably be banned from any USATF event for a period that would effectively be for life (sort of like Lance Armstrong cannot compete in any competition any more, not just bike racing). Note that the testing is conducted by the US Anti-Doping Agency, so the tests are not the same as an employment drug test. So hopefully I have a nice long run of success with rotigotine that lasts until my running goes back to a recreational activity.

[ViewsAskew]

I hope it works well for you.

[Frunobulax]

I strongly recommend to talk to your doctor about tapering the dopamine agonists, and switching to one of the other drug classes effective against RLS. I experienced augmentation with all three DAs I took: ropinirole, pramipexole and rotigotine, and I do think that augmentation is to be expected from any DA.

[ViewsAskew]

I strongly recommend to talk to your doctor about tapering the dopamine agonists, and switching to one of the other drug classes effective against RLS. I experienced augmentation with all three DAs I took: ropinirole, pramipexole and rotigotine, and I do think that augmentation is to be expected from any DA.

I did, too. But, many do not. Or with some it takes years. I augment on any of them in less than a week. There just isn't one size fits all in WED treatment - I sure wish there was!

I am not sure I agree with it, but the more up-to-date info on treating WED still says to try a second DA if you augment on one. It's only if you augment twice that the literature suggests not to try it again.

That said, even though I've augmented on 4 dopaminergics, I still can take pramipexole as long as I only take it 1 or 2 days, then stop for 1 or 2 days. Fascinating, in a way!

[Rustsmith]

I strongly recommend to talk to your doctor about tapering the dopamine agonists, and switching to one of the other drug classes effective against RLS. I experienced augmentation with all three DAs I took: ropinirole, pramipexole and rotigotine, and I do think that augmentation is to be expected from any DA.

When I went in for my appointment with the doctor my position was that I needed to get off of DAs. However, I am already on gabapentin for migraines and that was not been addressing the urge to move part of WED. I could therefore not expect any of the other alpha-2-delta drugs to provide much help. I have also had issues with some of the other anti-seizure meds in the past that caused mental fogging, a loss of emotions and a couple of other unacceptable side effects.

I cannot go onto any opiates at this time because I will soon be competing in a USATF national championship meet where I will be subject to random drug testing. ALL opiates are on the US Anti-Doping Administration's banned list and the tests that they do are much more extensive than normal employment drug tests. Moving to one of these drugs would end my dream of competing at a national level track championship (even though I have no prayer of finishing any higher than middle of the pack).

Therefore, I agreed to give the Neupro patch a try - but I remain skeptical that it will work for very long. However, so far so good.

[QyX]

I strongly recommend to talk to your doctor about tapering the dopamine agonists, and switching to one of the other drug classes effective against RLS. I experienced augmentation with all three DAs I took: ropinirole, pramipexole and rotigotine, and I do think that augmentation is to be expected from any DA.

I did, too. But, many do not. Or with some it takes years. I augment on any of them in less than a week. There just isn't one size fits all in WED treatment - I sure wish there was!

I am not sure I agree with it, but the more up-to-date info on treating WED still says to try a second DA if you augment on one. It's only if you augment twice that the literature suggests not to try it again.

That said, even though I've augmented on 4 dopaminergics, I still can take pramipexole as long as I only take it 1 or 2 days, then stop for 1 or 2 days. Fascinating, in a way!

Same goes for me. I can take Pramipexole 1 or 2 days but then that's it! I tried Ropinirole, too. The first two days it worked but then I augmented. Later I tried it again but no luck. Augmenting from day 1 so sometimes when I really can't sleep I can take a low dose of Pramipexole.

So much for the dopaminergics...

[Frunobulax]

When I went in for my appointment with the doctor my position was that I needed to get off of DAs. However, I am already on gabapentin for migraines and that was not been addressing the urge to move part of WED. I could therefore not expect any of the other alpha-2-delta drugs to provide much help. I have also had issues with some of the other anti-seizure meds in the past that caused mental fogging, a loss of emotions and a couple of other unacceptable side effects.

I cannot go onto any opiates at this time because I will soon be competing in a USATF national championship meet where I will be subject to random drug testing. ALL opiates are on the US Anti-Doping Administration's banned list and the tests that they do are much more extensive than normal employment drug tests. Moving to one of these drugs would end my dream of competing at a national level track championship (even though I have no prayer of finishing any higher than middle of the pack).

Therefore, I agreed to give the Neupro patch a try - but I remain skeptical that it will work for very long. However, so far so good.

Augmentation is considered non-reversible. If the patch works then stick with it, but be extremely careful if there is any sign of augmentation.
If your doctor is a specialist, he will know some alternatives. Your ferritin levels are fine? Any vitamin/mineral deficiencies (B6/B12)?

Do you take any supplements - protein shakes, creatine, energy drinks, something like that? Artificial sweeteners in your drinks? You might try to avoid these for a while, especially sweeteners and anything that contains amino acids. Just long enough to check if it makes a difference. Check out the non-prescription section, I am suspecting protein shakes for a recent increase in symptoms http://bb.rls.org/viewtopic.php?f=20&t=8868. Actually I changed a bunch of things (after a week of horrible nights), but it's too early to tell if it helped. (Just 3 nights ago, and the last two nights were a bit better, but not exactly great either.)

[ViewsAskew]

Where have you heard that augmentation is not reversible? I've not seen that - here in the US, I've always seen the opposite: that after you stop the offending substance, the symptoms will return to prior levels. In my time here - I guess close to ten years - I can only remember 4 or 5 people who believed their symptoms did not return to prior levels (I am one of them). I've often thought that for some people augmentation triggers something and once it's triggered, life is never the same. But, what it is, I haven't a clue.

[Frunobulax]

Where have you heard that augmentation is not reversible? I've not seen that - here in the US, I've always seen the opposite: that after you stop the offending substance, the symptoms will return to prior levels. In my time here - I guess close to ten years - I can only remember 4 or 5 people who believed their symptoms did not return to prior levels (I am one of them). I've often thought that for some people augmentation triggers something and once it's triggered, life is never the same. But, what it is, I haven't a clue.

Interesting. Please define "augmentation". I'm not talking about a rebound reaction, where WED symptoms flare up as the medication is wearing off - this happens naturally and the rebound will disappear after stopping the medication. I'm also not talking about a paradoxical reaction.

What I mean with augmentation is a long-term, irreversible progression of the symptoms. I always understood that this seems to happen more often if people take DAs or L-Dopa compared to opioids or anti-epileptics.

But I now realise that the use of the term is not well separated from a natural progression of the symptoms, and that there are subtle, but important differences depending on the language: In the english-speaking literature there are a few (but really few) remarks that augmentation may be reversible. In the german literature I have never seen such an indication, and a lot of text state clearly that augmentation is a very severe complication, implying that it is permanent. Several doctors I asked denied the possibility of a reversal of augmentation. Paradoxically, the recommendation in Germany is to continue with the DA medication unless the augmentation is "severe". Me, I started on ropinirole, and my doctor kept increasing the dosage from 0,5mg to 2mg. Then he switched to pramipexole and went from 0,35mg to 1mg a day, throwing in rotigotine as a second DA later. The whole process took just 3 years. Of course, that doctor had no clue and the only medication class he knew were DAs - lucky me, so he kept pushing the dosage. At the start of the treatment the symptoms started in the evening and were confined to the legs. Now they are were 24/7 whenever I rest for a short time (in a meeting/cinema/train, bus etc.) until I started my 24/7 opioid treatment. 8 months after coming off DAs there is nothing that suggests that the augmentation is wearing off.

Personally I think that there is at least a chance to stop it and possibly reverse it, as I wrote over in the non-prescription section. That's why I wrote "augmentation is considered non-reversable".

[cornelia]

I think that in the USA they also say that light augmentation is treatable if I'm not mistaken.
But reading your story I think you are experiencing natural progression of RLS rather than with ungoing augmentation. But you can write to dr B: he will answer you within 2 days (most of the time).
Corrie

[Rustsmith]

Frunobulax wrote:
Augmentation is considered non-reversible. If the patch works then stick with it, but be extremely careful if there is any sign of augmentation.
If your doctor is a specialist, he will know some alternatives. Your ferritin levels are fine? Any vitamin/mineral deficiencies (B6/B12)?

Do you take any supplements - protein shakes, creatine, energy drinks, something like that? Artificial sweeteners in your drinks? You might try to avoid these for a while, especially sweeteners and anything that contains amino acids. Just long enough to check if it makes a difference. Check out the non-prescription section, I am suspecting protein shakes for a recent increase in symptoms viewtopic.php?f=20&t=8868. Actually I changed a bunch of things (after a week of horrible nights), but it's too early to tell if it helped. (Just 3 nights ago, and the last two nights were a bit better, but not exactly great either.)

- The physician treating my WED is a sleep neurologist. I am still deciding if my level of care is by an WED expert or just a knowledgeable physician. However, I am located very close to one of the WED Foundation Care Centers, so I have alternatives. As for being able to judge my doctor's knowledge of WED, I have a great basis for comparison in that a see a different neurologist for the treatment of my migraines and that doctor is completely clueless about WED even though she thinks that she is competent to treat me.
- My ferritin level is 246, which I increased from 43 at the time I started with pramipexole by taking 65mg FeSO4 twice a day.
- I do not have any vitamin deficiencies according to blood tests conducted by my regular doctor (other than Vit D3, which is at acceptable levels with supplementation).
- The only supplements that I take are glucosamine and 1000 units vitamin D3. I stopped taking the FeSO4/vitamin C after getting my recent ferritin results. I have never used protein powders, creatine and have only tasted an energy drink once - and did not like it).
- I have not seen any effect of avoiding artificial sweeteners. I occasionally travel to regions of the world where these are not easily available and I have never seen any change during the periods when I am not consuming them.
- I am very familiar with the non-prescription section of the website. I take a second generation anti-histamine that is absolutely necessary for part of the program for controlling my severe upper respiratory allergies. Early in my involvement with this bulletin board I contacted Dr B about this. His reply was that the second generation/non-sedating anti-histamines are not a problem because they do not cross the blood/brain barrier. Second generation products are considered to be the Zyrtec, Claratin, Allegra lines of products. Interestingly enough, the first generation products based on benedryl, which can be used as a sleep enhancer for many, have the same awakening effect on me that caffeine has on everyone else.

[ViewsAskew]

Where have you heard that augmentation is not reversible? I've not seen that - here in the US, I've always seen the opposite: that after you stop the offending substance, the symptoms will return to prior levels. In my time here - I guess close to ten years - I can only remember 4 or 5 people who believed their symptoms did not return to prior levels (I am one of them). I've often thought that for some people augmentation triggers something and once it's triggered, life is never the same. But, what it is, I haven't a clue.

Interesting. Please define "augmentation". I'm not talking about a rebound reaction, where WED symptoms flare up as the medication is wearing off - this happens naturally and the rebound will disappear after stopping the medication. I'm also not talking about a paradoxical reaction.

What I mean with augmentation is a long-term, irreversible progression of the symptoms. I always understood that this seems to happen more often if people take DAs or L-Dopa compared to opioids or anti-epileptics.

But I now realise that the use of the term is not well separated from a natural progression of the symptoms, and that there are subtle, but important differences depending on the language: In the english-speaking literature there are a few (but really few) remarks that augmentation may be reversible. In the german literature I have never seen such an indication, and a lot of text state clearly that augmentation is a very severe complication, implying that it is permanent. Several doctors I asked denied the possibility of a reversal of augmentation. Paradoxically, the recommendation in Germany is to continue with the DA medication unless the augmentation is "severe". Me, I started on ropinirole, and my doctor kept increasing the dosage from 0,5mg to 2mg. Then he switched to pramipexole and went from 0,35mg to 1mg a day, throwing in rotigotine as a second DA later. The whole process took just 3 years. Of course, that doctor had no clue and the only medication class he knew were DAs - lucky me, so he kept pushing the dosage. At the start of the treatment the symptoms started in the evening and were confined to the legs. Now they are were 24/7 whenever I rest for a short time (in a meeting/cinema/train, bus etc.) until I started my 24/7 opioid treatment. 8 months after coming off DAs there is nothing that suggests that the augmentation is wearing off.

Personally I think that there is at least a chance to stop it and possibly reverse it, as I wrote over in the non-prescription section. That's why I wrote "augmentation is considered non-reversable".

In the English-language medical literature, augmentation refers only to symptoms that increase because of a dopamine agonist (or in some cases tramadol). I have not read any German studies, alas, so cannot comment on the language used. It sounds as if it may not be terribly consistent from language to language, or that subtleties in language make for difficulties in ensuring the exact meaning is the same, especially in translation!

In the US, some doctors also would recommend that unless the augmentation is severe, that the person continue with the DA. A few doctors, however, who've treated hundreds of people who've augmented, are recommending that the DA is stopped more quickly when augmentation occurs. They feel that keeping people on the DAs always leads to an inevitable outcome - severe augmentation - and that stopping them at that point is even harder. it's better to get the person off the DA soon, so that a more viable treatment can be found and hopefully opioids can be avoided - at least for now.

Your situation is much like mine. Beth, myself, you, and a few others here had that same happen. But most others here found that their symptoms returned to pre-treatment levels after they stopped the DAs. I do not know why we are so lucky! (said with sarcasm).

My story: I was prescribed DAs for PLMS - I had hundreds of movements and awakened 30 or more times a night (that I was aware of). At that time, I had WED only a few times a month, very mildly. Within a week or treatment, I had WED every night starting around 10 PM. Within a month or so, it started by every evening. A few months later, it started in the afternoon. By the end of treatment - 18 months - it had been 24/7 for at least 6-8 months. As with you, I used opioids to get off the DA. For me, I found that my symptoms did decrease mildly by the end of the first year off. Instead of 24/7, I have them about 18 hours of the day. They start within a couple hours of getting up most days and I often have them during sleep for the first couple hours, then I get some peace.

My doctor has long said that what happened to me was augmentation AND progression. In the English-language research/writings, progression is when symptoms get worse on their own - it's just the disease getting worse (as Corrie noted). And, yes, you are correct - there is no known fix for that. So, my doctor (Dr Buchfuhrer), believes that while augmentation caused my symptoms to be worse, at the same time, my disease naturally got worse. That is why there was such a small decrease in symptoms when I stopped the DA.

I am not sure I believe this, but have no way to prove otherwise. It's very clear that many people do revert to lesser symptoms. We've had people here who did not need medication after the augmentation was resolved. They were given a DA when they likely didn't really need it daily. They may have been given a too large dose, and once the augmentation was resolved, they found they could deal with their symptoms with exercise or other means.

I think that somehow augmentation flips some metaphorical switch in some of us and our disease progresses quickly, never to return to prior symptoms. For others of us, that doesn't happen. I haven't a clue why.