Neurologists Outcome

Well, not what I thought. After waiting 7 months to see a certain consultant. He really didn't help much. Told me my doctor could give me whatever, asked if Ihad taken the following..... then he rattled off about six different drugs I had never heard of. I said no, why not, I haven't been offered them. I asked him what the maximum dose of Mirapexin is and he said there isn't. You can take the same high dose as a person who has Parkinson's. Take as much Prebagalin as you can as that helps. Also any drug that is used for Parkinson's can be used for RLS. He has suggested I take Sinemet (Levadopa) and Madopar. But not sure if they are extra meds with my Mirapexin or on there own. Oh well , just wish I could drink....

Margaret

21 Replies

oldestnewest
  • What a load of rubbish, i would say stronger words, but holding back.

    He didnt help at all, let alone much.!! I take you know that you CANT take the same dose of mirapexin as some one who has PD. the same as the other PD, meds. ropinerole and the neupro patch. The leafet gives the dose for RLS.... I dont know what the dose for prebagalin is and if there is a top dose...someone will know on here.

    Sinemet used to be used for RLS, but very rarely if at all now. I think that one also can cause augmentation. I havent heard of Madopar, i am guessing that one isnt used for RLS, otherwise i am sure i would of heard of someone using it.

    They are definately not extra to take with the mirapexin, as they are PD meds, so would be in the same class as the mirapexin, dopamine agonists.

    Hopefully nightdancer will see your post and comment, as she is better up on the meds, and the names than i am.

  • Hi, Elisse, thanks for the sympathy. I do hope that Nightdancer replies because if my doctor gives me these meds I could end up in a right mess. I will have to look up these meds and think about it. Seven months of waiting and this...

  • oh, yes, I saw this. :o) See my reply below. And, I see you wrote to Dr. B? I could use some very strong language right about now. all morning, no matter what web site I am on, there are doctors who have no clue at all. It is tiresome how LAZY some of them are when it comes to actually helping people who are suffering. My head may explode. Pregabalin's brand name is Lyrica, and it is approved for use in nerve pain and Fibromyalgia in the US. Yes, there is a high dose to this med, like any other med. are you sure this guy is a real doctor? Iff you take the same dose of Mirapxin as the high PD doses, you will actually cause augmentation, or worsening of symptoms, same wth ropinerole and Neupro. RLS is dosed much lower than f taking it for Parkinson's. Sinemet can cause augmentation faster than any of the others, rememeringwe are all different. BUT, the PD meds can turn on you if you take too much and do the exact opposite of what they are supposed to do. I know what I would personally teel that doctor.

    and, take as much "Pregabalin" as you can??????? Is he trying to kill you? If you are female?, and you are of childbearing age and thinking of getting pregnant, then Lyrica is not for you anyway. It has a high incidence of miscarriage associated with it. rxlist.com is a great web site to look up meds, which I STRONGLY suggest that everyone do it. Look it up, read about it, then ask us if you do not understand. But, yor doctor's brain is plain mush. I have never heard that in 15 yrs of support groups!! drugs.com is another good web site. Pregabalin is not approved for RLS in the US,. even though they are trying to push it through. I do not know of anyone wh uses it for RLS, so I am really opposed to to Lyrica

    being approved for RLS in the US. My opinion, but I hate that drug and it is not proven anywhere that it helps RLS, excpet in a few very small studies done over a few wks time with like 12 people. Those do not count for me. hate the short studies, the rush to get these meds approved for conditions that they MIGHT help, but probably will not. ask a lot of questions and do a lot of reading, Cobourg. ;o)

  • I think Sinemet is the one I took ages ago and it took so long to work I gave up! How long does Mirapexin take to kick in and do people recommend it ?

  • Sinemet should have worked from the first dose.

  • it should have if it is the rightmed for that person. If it does not help than that class of meds may not be for you.It never worked for me.......disclaimer, disclaimer. It is now considered to be the "old fashioned" Parkinson's med, and is not used that much any more for RLS ( am in the US) .

  • Hi Cobourg, Definately do some research, i would always recommend anyone do this before they take any meds.

    If you want a really good answer about those meds. and cant find what you want to know anywhere else. then go to rlshelp.org the best website on the net for info on RLS and medications. You can e-mail the doctor on that site. Dr.B as most of us call him. and ask his advise on those meds. He will answer you in 24-48 hrs. i have done this a few times myself and always got an answer back in 24hrs. I think the treatment page mentions Sinemet. Explain to him what the neuro said to you, that will help him when replying back to you.

  • Sounds like Consultant wasn't worth the time it took to visit him, let alone waiting on the appointment. His advice is less than useless and indeed could be harmful if someone wasn't on a site where they could come and ask advice. Sinament can only be taken a couple of times a week, so high is the risk of augmentation. And there is definitely a top limit to requip and mirapexin, I think for requip it is 4mg daily.

    I hope he wasnt putting himself forward as someone with experience in treating rls. It might have been a good idea to have had a print out of the RLS Medical Bullein for the treatment of Restless Legs - for his information and guidance.

    Dr B is excellent in his responses and his email address is

    somno@verizon.net

  • Hi Cobourg ~ How disappointing :-( I'm curious re: the comments about Sinemet here. I used that exclusively before I started on the Neupro patch. The 50/200 formula does take a long time to work, but there is 25/100 dose that works for more immediate release. They don't last very long (maybe a couple of hours). I still use it when I mess up the timing on the patch and need something supplemental. Wishing you luck.......

  • hi cobourg, im using mirapexin,and im finding it quiet good, i sleep really well most of the time, it has a problem with weight gain though, but for me, the rls was everyday and night, so its the lesser of 2 evils for me, others have taken it without gaining weigh, thats one of the problems with the meds, we all react differently, so even though i prefer this med for myself, it doesnt mean its going to be the one for you, so as Ellise says, research it, and maybe give it a try.

    jean-birmingham

  • Hi All, many thanks, so thats why I'm overweight. I just couldn't understand it, as |I don't eat much at all, and even when I try to diet nothing much comes off. I take 2 x 0.35 mg of Mirapexin each night but my legs start at about 5pm. If I'm tired in the afternoon they will start then and don't stop. The wonderful consultant who was suposed to be the best told me to take my tablets at 5pm I just looked at him, I had already told him that I take my pills at 7.30 and they make me sleepy by 9m. I said if I took my meds at 5pm I would be in bed by 7pm. He sort of just gave me a look, We weren't getting along as you can tell!! I took a print out of the doseage of Mirapexin and the slow release one with me all the facts were there, I downloaded it from the web, had it in my hand, went to show him and he said he wasn't going to look at it, as it waas in his book.... I will send an e mail to Dr B and explain to him in a short version and see what he says.

    Margaret

  • With regard to your present medication of Mirapexin what about splitting the dose and trying one pill earlier and then the other at 7.30.

    Good luck with Dr B. and it will be interesting to hear what he has to say.

  • Hello Margaret,

    Raphael here. I used to take Sinemet years ago and to the best of my knowledge I don`t think it is used so much now.

    I am allowed to take Madapa for journeys while traveling in a train or car but only then. Any meds we are prescribed have to be for RLS and although they seem the same as Parkinson drugs the dosages we take had to be verified by NICE so in effect they are tailor made for RLS as is the drugs for Parkinsons tailor made for them. We must also remember that whatever Dopamine drugs we take we must not exceed 4mg per day. Gaberpentin may be added to one of the Dopamine drugs as can Amatriptiline but you need to see a very clever Consultant Neurologist for these cocktail of drugs and am afraid to say they are few and far between.

    Raphael

  • amitryptiline- I have to comment on this. That is HIGH on the list of drugs to avoid. Of course, the disclaimer is, everyone is different, but 99% of the RLSer's who take this drug..It will most liely make your RLS worse, as will most any atidepressant in that class or the SSRI class (like Celexa, paxil,Prozac) VERY FEW (for emphasis) RLSer's can tolerate those classes of meds. If you can, than good for you, but I would not be thowin g that med out tere for new people. Dr. B would say the same thing, and does on his web site. From personal experience, amitryptiline was the drug that really kicked my RLS into high gear, before I knew what RLS was, and it almost drove me out the 3rd story window, literally, my RLSwas so bad. And I am not alone in that experience at all.

  • Hi Raphael, yes clever neurologists are few. It's interesting what you say about taking Madapa for journeys. I flew to Canada las year, and my legs started as soon as I sat down as I was tired. It was a 12 noon flight but I had been up since 3am. They were off for the whole 8 hours. The "consultant" said that any drug used for Parkinsons could be used for RLS, makes you think doesn't it. Does anybody know of a place in Newport, Wales or Bristol that treats RLS he did mention that as I was walking out. He said that was the next best place for me to go!!

    Not sure what he meant... Oh I have e mailed Dr B last night lets hope he can sort this out.

    Margaret

  • What a load of rubbish!!!! He knows nothing about RLS or how to treat it at all! I see you wrote to Dr. B and he agrees with us. :o) that doctor is an idiot, in plain language. Where did he go to school??? LOL. Not funny, but ifhe said that about Parkinson's drugs and that there is no dose too high, is the one of the stupidest things I have heard in years. I feel sorry for the rest of his patients!

  • I believe the same thing has been said that I said a million times on here. YES, there is adose that is too high for Requip or Mirapexin for RLS. that is why I said what I did. any doctor who says that is not up on his meds. Yes, I know all doctors are human- I have several medical advisors for my support groups I run for RLS and sleep disorders with 4,000 members. Raphael- you have siad that same thing. You said back in March that 4 mgs is the highest anyne should go with Requip, and that is TRUE. that si what I was irritated about. I stand by my commnet that that doctor knows nothing about treating RLS if he says there is no dose limit. I know you talked about augmentation, too. :o)

  • Hello Nightdancer and All,

    I do not openly disclose my real name because of the position I hold. But just from speaking as an RLS sufferer I thought this forum was for people to discuss their condition of RLS and to support earch other not to be seen to telling each other what to take and not to take. Regarding Amitryptiline my Consultant Neurologist is one of the most noligable in England and it was he who put me on the drug.. As you say it did not do you any favers but you have to remember there are people out there reading your comments and I do think that there seems to be a lot of anger in your tone.

    I have suffererd with RLS for 49 years now and there is little that I don`t know about RLS. Please allow this forum to remain in the manner that it was set up for. To help and support each other in a friendly way. Yes everyone is allowed to their opinion that is what it is for and please allow everyone to have their views. The doctors are only human and are trying their best sometimes they make mistakes but at the end of the day let us just have a friendly forum where RLS sufferers can find a place to chat to each other in a friendly way. Of course everyone is going to share what they take and others who read it will make up their own mind but there is no one on this forum who is more important than the other and hopefuly while sharing on this site people will become more knowledgable and be able to go and see their doctor to get help.

    Lets hope that there is more research going on so that ALL of us may experience a pain free life.

    Raphael

  • Hi Raphael, I agree that there sould be more research into RLS and that we may all have a pain free life and a good nights sleep.

    Margaret

  • Actually nightdancer is not the only one who has taken Amitryptiline and found it has sent their RLS nuts. I belong to several support groups and have read posts from people who have used this anti-d and have had the worse time ever regarding the RLS. She also says disclaimer, as she knows it doesnt apply to everyone.

    There are many doctors out there who havent a clue about RLS and wont listen to their patient and are not prepared to read what meds can be used and what ones are likely to make matters worse. It makes me mad when i read peoples posts on here and they are sufferering because of a doctor who is not prepared to listen to the patient who probably knows more about it. a good doctor would work with someone and could learn alot about RLS on the way instead of..i am the doctor and you will take what i say and not what you say.

    As far as i can see, everyone on here is friendly and gives their advise and support when asked for it.

  • I believe I was making my remarks about her doctor, his unwillingness to even look at the info Margaret brought to him. I know Iif I had to wait 7 months to see a doctor and then that happens, I would be more than a little upset. The statement that "there is no dose of Mirapexin that is too high" certainly is not right. Every med in the world has a dose that is too high, even over the counter meds. And, if one starts out on high doses of dopamine agonists(mirapex and ropinerole and sinemet), augmentation can occur, and the same med that might have helped you on a lower dose will do exactly the opposite and actually cause your symptoms to appear earlier in the day, and can make them worse. So, the lowest dose to start with is the best way to do it, and that is with any med for anything. That is why I reacted that way, as well as others did, because that information that there is no dose too high of Mirapexin for RLS is just plain wrong. We should never get up to the Parkinson's dose of any of thse meds. 4 mgs is the limit on ropinerole for treating RLS, and Mirapexin is actually a stronger med, so that is why the doses start out much smaller on that drug. That's all. But, I have to speak up when I know someting is wrong, for sure. And, Raphael, you know you have posted about Requip beofre, and what the highest dose for rLS is, and you and I agree on that, because that is absolutely true, and any good RLS web site will have that same info. another saying we have in the US is "Your mileage may vary) YMMV :o) That means the same as "what works for one may not for another" when talking about any meds. so if the Amitryptiline helps you, great, Raphael. You are one of the very lucky few who can take that class of meds and not have it make your RLS worse. I need to say this again, tricyclic antidepressants and SSRI antidpressants are the #1 and #2 classes of drugs to at least avoid as long as you can if you have RLS. This has been proven in many studies, and lots of patient stories, as well as Dr. Mark Buchfuhrer (medical advisor to the US RLS Foundation for years) has this info on his web site on the treatment page. rlshelp.org and, the rls.org web site, which is the US RLS Foundation's web site all have the same info, plus the Mayo Clinic, the Australian RLS web site, and all the sleep clinics that treat RLS in the US. All my remarks are made from experience, and, like I said my medical advisors for my groups. I am not "angry" at anyone here. I simply cannot stand it when a doctor will not listen to a patient, even if he is supposed to be knowledgable.

    I am not telling people what they can and cannot take, just citing statistics, that's all, so people will be aware who need help with meds and they can get that kind of support also.

    I think that can be agreed upon. have a good day!

You may also like...