Pramipexole

[beady3]

Can some one tell me please , I have been taking 268 MCG of Pramipexole for about 2 months it has been wonderful no pain with plenty of sleep, now. it’s all starting again no sleep plenty of pain, should I go up to 350 MCG a day I can as neurologist gave me the tabs but will it just be the same in 2 months back to square one , shall I stick it out or go up thanks for any reply’s

[Hidden]

Hi Beady, i think you are augmenting again so it wouldnt be advisable to increase your dose. you have been on the neupro patch and came off of that, as that didnt seem to be working. I wouldnt try any more dopamine meds.

[beady3 in reply to Hidden]

Thank you for your reply , what would you suggest I try ,I have had Pregablin and Gabapentin

[Hidden in reply to beady3]

Maybe try the Gabapentin or the Pregabalin by itself if you were on the patch or taking the pramipexole when taken either of those meds, Try one of them without any other meds. Discuss it with your doctor.

[LotteM in reply to Hidden]

Beady, like Elisse I know you have a long history with pramipexole and the Neupro patch and it appears you are augmenting - again. I don't remember how long you tried the gabapentin and the pregabalin before and whether these medicines gave you negative side effects.

You have to keep in mind two things if you or your doctor wants you to try them again:

1. If you reduce and then stop the pramipexole, your RLS will very likely become much worse. It may take a long time, weeks to months, for these 'withdrawal' symptoms to lessen. During this withdrawal period it will be difficult to assess whether the gabapentin or pregabalin is effective. The 'withdrawal' may be stronger than the medicines. During this time, you may need an additional strong medicine, maybe your doctor could prescribe tramadol again? U

2. It takes several weeks for gabapentin or pregabalin to start working. Thus, it will be good to already start the gabapentin or pregabalin as soon as you start reducing the pramipexole. After you have completely stopped te pramipexole, some people need a high dose to control their RLS, others a much lower dose. It will be trial and error and repeated discussions with your doctor about how things go and find a dose that works for you.

Finally, during the next time, when you are slowly stopping the pramipexole and increasing the gabapentin or pregabalin, and possibly also take tramadol, I sincerely hope you'll get good support from your doctor and maybe others (husband? children? friends?) around you. To help decide how much gabapentin or pregabalin is effective and when you can try to stop the tramadol again.

Good luck. It will again be a tough journey. But, you've been there and done that, as the Australians say. So you'll get trough. And just post and rant if you need to!

[Hidden in reply to LotteM]

Thanks Lotte you explained to beady in full detail what she has to do to get back to relief.

[Heatherlss]

Completely agree with Elisse. However, I know it would be extremely hard for you. Hope you have it sorted asap.

[Heatherlss in reply to Heatherlss]

Hi beady, I went through your posts. Unfortunately, for you, Augmentation really was a given this time when you went back to Pramipexole. It sucks and I'm so sorry about that.

I noticed that you had good results with Tramadol but then it stopped working. Now, I remember reading here that for some people, when tram stopped working, they tried drug holiday and then restarted it and that worked for them. Perhaps, you could try doing the same.

[Hidden]

I agree with Elisse. Your best bet might be to stop taking ANY dopamine agonist. It can help to switch from pramipexole to Neupro, but not the other way round.

Since you've already tried Neupro, it would be better to switch to an alternative NON dopamine agonist.

[gaula75]

I take 2 Pramipexole and 2 Gabipentin and sleep well for 5-6 hours. No RLS since doing this.

[Hidden in reply to gaula75]

Hi gaula, glad the pramipexole and the Gabapentin is working for you. But beady has to try a non dopamine med as she has augmented on what she is taking.

[DTache]

You could increase by that amount but I would suggest that you do that just for a short period of time… Current thinking regarding the use of these medications is that less is better for the long term. I would ask my doctor about a prescription for gabapentin to be taken concurrently with the pramipexole and see if that supplementation combination takes care of it. You’re better off in the long term to be Supplementing with 600 to 1200 mg of gabapentin along with your current dose of pramipexole. In the meantime, you could increase the pramipexole to the next higher level but I will try to make that change within a month or two to prevent what is called augmentation… A worsening of the symptoms I.e. The discomfort occurring earlier and stronger. Typically, augmentation occurs after a decade or so of use of these sorts of drugs and typically you’d have to be on a higher dose for that to happen so don’t worry but do it right and try to keep your pramipexole to a minimum and supplement with gabapentin… That would be what I would suggest you discuss with your doctor.

So go ahead and increase it but get busy talking to your doctor and lastly I would strongly recommend that your doctor order a serum ferritin level test to determine if you have an adequate storage of iron required to control Restless legs. The ferritin level must be greater than 50 ng/ML; if not, iron supplementation will be needed… May not take all of your moving problems away but often times when the ferritin level is optimized, the medications work better from my experience! Hope this helps!

Oh, You probably know this but the pramipexole should be taken Three hours before anticipated bedtime so make certain that you’re giving your body enough time to absorb it so again, pramipexole should be taken three hours before the time you anticipate going to bed!

[Hidden in reply to DTache]

Hi, i know the med history of beady, and she has already augmented before on a DA and is now again augmenting on the pramipexole , So she has to follow Lotte's advise on what she has to do now. I know you are trying to be helpful but in beady's case she needs to not take any dopamine med probably for ever.

[DTache in reply to Hidden]

Agree! With that additional information, I could not agree more. Dopamine agonists are not for you and the alternative advice you’ve been given should be followed to the letter! Thank you for caring as much as you do and taking the time to enlighten me and Beady!

[Graham3196 in reply to DTache]

Hi Dr DanTMJ-Man. Are you the person we are all searching for? A medical doctor who has a bad case of RLS? This would make you invaluable as we could give you lots of first hand knowledge and you could collect hundreds of patients who know you would at least understand the problem.

[Graham3196 in reply to DTache]

Just for general information. The recent thinking on ferritin level from Doctor Buchfuhrer in the US and supported by research (or at least practice) at Johns Hopkins is that it is desirable to raise the patients ferritin level to above 350 as there is a huge range of levels that patients respond to. So some patients are symptom free at 50 while others need 100 and there are some "tough" patients who need 200 and up to 350. Of course RLS, being what it is, not everyone is cured, even at 350 but this is about the point at which doctors seem to believe is the maximum "definately safe" level. Patients with a potential problem (such as old age in my case) might be a bit dodgy at higher levels.

Note that some people have very high iron levels naturally (over 1000 in some cases ) and still have RLS. They may even require treatment to lower their ferritin level. You definitely need to check with your doctor to make sure you can tolerate an iron infusion but the people I have met to do with iron infusions were pretty cautious.

Doctor Buchfuhrer mentioned a success rate of 80% but its not clear if this was 80% showed an improvement or 80% total cure. Elsewhere a total relief rate of 30% has been mentioned. 30% sounds pretty good to me!

The old value of ferritin above 75 or so was based on a limited experiment that didn't investigate the value of raising ferritin to any higher level.

In my case we raised ferritin from 100 to 350 and it fell back to 240 but the RLS didn't respond. My daughter had an iron infusion and from that day has not had RLS again. You have to give it a try!!!!

[DTache in reply to Graham3196]

Thank you for the information… I am finding this to be a most informative experience… I think I have much to learn and I am humbled by the quality of information available on this website. I think my goal at this point might be to be more of a spectator/student and after I have more comprehensive understanding of the results of Dr. Buchfuhrer’s research and writings! Thank you again for your very excellent evidence-based responses! The knowledge I have been gaining will be of great value to my patients as well as people following this blog!

Thank you again for your willingness to share your knowledge on this very important subject!

[DTache]

No I do not have RLS.

[Hidden in reply to DTache]

Apologies, I'm curious, since although you don't claim to be a doctor, the implication is there, plus, you don't have RLS.

I'm wondering then what you're doing on this forum?

If you are a practising doctor, as Graham says, it might be useful for you to get some insight into peoples experience of RLS and information about appropriate treatment options, which would be great.

I read that many RLS sufferers find their doctors relatively uniformed about RLS and ignorant of such things as augmentation and it would be great to change that.

I don't mean to be offensive, I just have concerns about your presence on this site.

[DTache in reply to Hidden]

The only reason I am on this site as I ran across it somehow a couple weeks ago and read with concern about the significant problem that a large number of people were having as expressed on this website. I am a practicing dentist with a limited practice in oral facial pain/temporomandibular disorders and I treat people with sleep Sleep related breathing disorders. I do have a board certification and Dental Sleep Medicine and as suggested, a large majority of people who present with sleep problems have had little to nothing done regarding their moving problems namely restless leg syndrome and periodically movements. I’ve had to gain a lot of expertise in this area because I don’t get much help with these people because most doctors haven’t had any formal training like I did for three years back at Tufts University not too many years ago. So I have offered my perspective on a few threads not because I have nothing else to do trust me I’ve got about 15 referrals I have to make tonight but because I genuinely felt that people out there needed some advice and perspective on these movement problems of restless legs and so here I am! most really excellent doctors as you have suggested, do not have a lot of training in this area but I happen to do so and I’m willing to share what information I that’s who I am!

[DTache in reply to Hidden]

so Minerva, let me ask you why are you on this website? RLS is quite treatable and most of my patients manage very well… Are you refractory to treatment… Are you not responding to treatment for your problem I presume that you have or are you also healthcare professional?

[Hidden in reply to DTache]

Thanks for the clarification.

I really do appreciate and admire your conscientiousness in attempting to help patients you come across deal with the RLS despite RLS being outside your field of practice.

You would expect expertise in RLS from a neurologist..

The intention of this site however, is not for health professionals to be offering information to people in any.professional capacity, or, I believe, even appearing to be. I know there are other doctors on this site who do not normally say or even imply they are doctors and only write from their perspective of being a RLS sufferer.

I think there are readers of thus forum who may be quite vulnerable for various reasons who may be unduly influenced by information coming from.someone who might appear medically authoritative despite the warnings against this.

I think you may be putting yourself in a difficult situation offering suggestions as a doctor on this site particularly when they're incorrect, e.g. suggesting someone suffering augmentation should increase their dopamine agonist.

There's no apparent injunction against people who do not have RLS themselves being on this site. There's also no injunction against doctors.

However, the purpose of this community is principally for people who suffer RLS to share their insights into RLS and to support each other. Some members are very well informed about RLS and there are many "patient experts".

I am just a retired guy who has suffered RLS for decades, severely in the last 10 years, have gone through augmentation and have experienced some medical mismanagement.

I also feel I'm fortunate enough to have the skills to research things, discriminate between solid evidence and misinformation, and then pass on what I've experienced, know and have learned.

That's something I've always done and get a buzz from.

I'm not a site administrator and in no way have a role in policing this site but at least if you wish, I'd suggest you could change your screename. Perhaps also try to be sure of your suggestions before offering them.

Mistakes are allowed, I make them. There are members of this site who pick up on misinformation, which is good thing and usually members respond well to such challenges.

Good intentions are also recognised and I recognise yours, however, you have no experience of RLS to share and no professional capacity on this site and perhaps should be careful about how your suggestions may be perceived

[DTache in reply to Hidden]

Thanks Manerva...yes, I will refrain from future recommendations. I have to say in my defense, the person to whom you referred who had previously augmented and was not on Pramipexole, I was not aware that she was augmenting; I was under the impression that she simply was not taking a sufficient quantity of the DA and as you have implied, I would never had recommended what I did had I understood her past medical history...my fault for just "jumping in". I have to say, the participants in this community are highly educated on the subject of RLS which is why I mistook this site for one populated by health care PROFESSIONALS. Kudos to you all; I will indeed continue to observe the discussions; it has been quite educational. I have been humbled by this experience and I think that that is good. I'm back to being a student again! Thank you for your very helpful response.

[Hidden in reply to DTache]

Something that would help you. When you see a post , to click on the name and it will take you to any other posts they have done and to the comments from members. That way you will learn more and not make a mistake of offering help to someone who was augmenting or anything else that might be offering the wrong advise to that poster.