Coming off Ropinirole

Well i now have the new tablets that will replace the Ropinirole. I have now been put on Sinemet (Carbidopa & Levodopa). These are to be started at 62.5mg four times a day and building up to 125mg four times a day while at the same time tapering down on the Ropinirrole. Just had to make myself a chart to keep me straight lol. I have decided not to start them until Friday to keep myself straight so with luck and perseverance i am hoping to be completely off the Ropinirole by the first of April. On reading the consultants letter i have discovered why he is sending me for the body and brain scan. Apart from the fact that my tendon reflexes are really brisk in arms and legs he has stated there is a disitinc crossing of adductors to be seen. He also mentions spastic catch in both knees, Hoffmans being slightly positive in both hands and is doing the scans on the brain and cervical spinal cord to look for any potential idiopathic changes. The blood tests he has taken include the iron studies and vitamin B12 as well as autoantibodies. He has also brought into the picture the fact that i carry the gene for ichthyosis and have severely dry skin and also a bladder problem i suffer from. The last i have noticed in some things i printed off as being a side effect of Ropinirole. One thing i do like in the letter is that although i wont be seeing him again for six months he has urged me to get in touch with him if there are any untoward developments and that he will send my GP a copy of the blood test results and any potential management complications flowing from them. It looks like i have landed really lucky in not only getting my GP interested in RLS but have also found a consultant willing to go the distance and help in any way possible. You may find me on here by the weekend ranting and raving lol but i sincerely hope not. I will keep you updated as to how things are going in the hopes that what helps me might just help someone else on here.

21 Replies

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  • I am pleased that you have found a GP who is willing to work with you and that you got him interested in RLS.

    However for daily use Sinemet is NOT prescribed anymore for RLS, as research has shown it has more than 80% chance of augmentation (the med will make the symptoms worse). I urge you to research this before you are making things worse for yourself (www.rlshelp.org) (medical treatments for RLS). Every single book on RLS written by experts stress this point.

    alg

  • Had a look at the site re the Sinemet and this is what it states, Sinemet should not be used for RLS (except by RLS specialists who are very well versed with the problems with this drug) so for the time being i will go ahead with what my consultant has prescribed and if there are any problems i will get back in touch with and face the problem should it arise. Thanks again

  • All drugs have side effects and we all deal with them differently. If thats what your consultant says then I think its cool that you try..You seem well informed so like you say..whats to lose it may just be the magic cure for you!!!...hope so!!!

  • thats brilliant you have found someone keen and thourouh, hope it all goes well and keep us posted!!!!

  • Thanks dragon fingers crossed wil keep you updated. Dekker is that UK or US that they have stopped prescribing? I will research it but how long does it take for augmentation because the Ropinirole is causing extreme augmentation which is why i went back to see the neurologist and he is an expert in RLS here. Unless augmentation starts immediately it cannot be worse than i suffer now. He has told me if there are any problems at all to get back in touch and we will try something else. It may be that it only works for a short while but if it helps me get off of 24mg a day of the Ropinirole i am willing to try it. I will check out the sites you mention to make myself aware of any problems that might crop up and meantime i am awaiting word for a full body and head scan along with the results of a bank of blood tests they have taken. Thanks again for the info.

  • The bladder problem could be related to a drop in oestrogen if you are of menopause age, i.e. anything from mid-30s, early 40s when we are 'peri-meno' - have a look at the UK-based menopause matters site if you are concerned that this might be the start of vaginal atrophy.

    Good luck with the withdrawal - keep in touch!

  • Thanks insect well past the menopause start (65) lol but thanks for that. I have had an op which sorted out the stress side of it but has puzzled the gynecologist who came to the conclusion it must just be a sensitive bladder, however the consultant for the RLS is thinking in terms of a side effect from the Ropinirole so will have to wait and see how things go. I will check out the menopause site though to see if there are any hints i can use. Thanks again.

  • Hi, I have been very lucky so far. No side effets from the Ropinerole. I noticed you mentioned B12. Both my parents have had Pernicious Anaemia. I was diagnosed as having it, but another GP changed his mind and told me I didn't. Confused ? Yup. Who do you trust ? I don't know. i have Fybromyalgia, Sleep Apneo, RLS amd either Myoclonic Jerks or PLMD do't really know. At the moment all I know is Ropinerole means I can sleep. Apart from that I really don't care. That might sound callous but lack of sleep is a killer, for me.

  • I have occasional RLS but I also have Parkinson's. I have been taking Ropinerole and sinemet (100/25) for 4 yrs. I am titrating off both because of the horrible side effects that can happen with especially sinement after taking 3 to 5 yrs. ( namely dyskenisia). I started Low Dose Naltrexone 8 mos. ago and this has allowed me to go off my meds...it is said to halt the progression. I plan on substituting Mucuna Pruriens ( an Indian herb) for the sinement since it does the same things without the side effects. I would research the side effects of sinemet before taking it.

  • Augmentation is very common in Sinamet, be careful it will drive you nuts!!

  • Thanks people but honestly i dont think Sinamet can be any worse than the Ropinirole for the augmentation. I ended up on 24mg a day so i am willing to try anything and if it only gives me a few months of relief then its something. At the moment i have heartburn, high BP, constipation, weakness, dizziness (like vertigo) concentration problems, anxiety and what appears to be narcolepsy and all of these can be tracked back to Ropinirole so as you can guess i am already being driven nuts. Even the Fybromyalgia is common with RLS and is one of the things my daughter was diagnosed with along with a lack of B12. As the "experts" on this site, those who have been here longest will tell you, what helps one doesnt always help another. We are all different in that respect so its a case of trial and error when it comes to the meds. If i dont try i will never know and i will try anything. Unlike most of you my problem isnt on a night i went past that a good few years ago. My biggest problem with RLS is during the day. It is very rare for me to suffer with it during the night now. All any of us can do is try and find the best treatment to suit us.

  • Well, if you have decided to get on with Sinemet in spite of the augmentation problem you should do that because you feel that it is right for YOU. Maybe sometimes we need unconventional actions to set something righ. I don't understand your former doc, agreeing a dose of 24 mg Ropinirole!

  • I did not start on the 24 mg a day I worked up to that over a period of seven years as my body got used to each increase and as it was the max dose for Parkinson (that is in the family too) it was felt it could not do any harm as long as my body tolerated it. Now it is causing augmentation I am changing to another med, which my neurologist is going to keep an eye on. I have to trust he knows what he is doing. We need to be able to trust somebody somewhere along the way. If i get augmentation with the new tablets i have to trust that when i inform him he will know what to try next. All meds have side effects and with RLS its going to be a case of trial and error. What suits you may not be suitable for me and vice verca. I have to at least try and who knows they might just be fine for me. I thank you for your concern and will let you know how things turn out.

  • The sleep specialist who prescribed you Sinemet after you have experienced augmentation with that drug (and even if you had not had any augmentation problems for that matter) is clearly not an RLS specialist. He may be listed on the RLS Foundation as a doctor who treats RLS (they do not vouch for the credentials of doctors listed on their site but rather just publish a list of doctors who state that they treat RLS) or he may call himself an RLS expert but that clearly is not the case based on his treatment of your RLS.

    This is doctors response to patient letter similar to yours

    There are neurologists who know something about RLS and the standard treatment protocol but there are very few who know how to treat augmentation.

    If experiencing augmentation with a dopamine agonist never switch to another dopamine agonist, especially Sinemet which is never used any more because of the augmentation it produces.

    If experiencing augmentation best option is to quit dopamine agonists and replace with another class of drugs i.e. anti-convulsants and/or opiates

  • Hi Stephenr can i just say that the consultant i am seeing is not a sleep specialist but a neurologist who treats RLS patients but mainly treats those with Parkinson. I have no idea if he is on the RLS Foundation site and i haven't heard anyone call him an expert in RLS. Can i just ask are you from the states or Britain and where the info you quote came from. I take it your an expert on the matter going by what your saying. Do you suffer badly from RLS yourself.

  • Hi Avosyl i am American, 51, suffering from RLS since early 40s..for the last 6 years i have used Mirapex, initially .125 and recently maxed at .75...i was noticing that my symptoms were coming earlier in the day, and sometimes to the arms (which never happened) while having to increase the dosages. so I went online and found this wonderful doctor, Mark Buchfuhrer, who is advisor to RLS Foundation and who answers patient letters by email at no charge..

    The information I gave you was from the patient letters on rlshelp.org and which are answered by Dr Buchfuhrer...if you read through all the patient letters (104 pages) you will learn about his opinion on augmentation with dopamine agonists..he has authored a few books on RLS and if you google his name you will see some positive comments about him, one even calling him the "guru of RLS." Who knows maybe he himself wrote this compliment!

    The Mirapex worked well for me but it has been pure hell getting off this drug (2 months now and still withdrawal pains).. My goal is to live without the dopamine agonists, using anti-convulsant Lyrica instead as suggested by Dr Buchfuhrer..right now i am using only 50-100 mg Tramadol at night to alleviate the withdrawal and this has been working..eventually I hope to replace the Tramadol. i had a doctor try to switch me from Mirapex to Sinemet but Dr Buchfuhrer told me not to do this..but as everyone knows, some people act differently with drugs so you can try Sinemet if you wish.

    I wish you long pain-free sleepy nights

  • you have a difficult situation with both Parkinsons and RLS..i am not a doctor so i cannot advise you.i can only repeat what i have read..i would suggest writing your questions to Dr Buchfuhrer..there are several patient letters from people like you with both Parkinsons and RLS and he is very prompt at responding (1 day)

  • Well i did as you suggested and emailed Dr Buchfuhrer within a day of my reply telling you i would do so but till now have had no reply (24 April) so not sure if i did something wrong or if there is a prob between his emails or mine. Before you ask i checked my junk mail to to make sure i wasnt missing it. Not sure what my next move would be so if you have any suggestions i would love to hear them.

  • Hi Stephenr my apologies for not having replied before now. I had a virus which knocked me for six followed by a severe chest infection which kept me out of action and left me exhausted. Just gotten over it all now. First of all i don't have Parkinson sorry if there's been a mix up there. My father did towards the end of his life and i have been told that it is related to RLS bit not sure how. There is no need to worry about the Sinemet any more. I had run out of the Ropinirole (first time ever) and had to start using the Sinemet and it was definitely a no no for me. Part of the augmentation with the Ropinirole was the incontinence it was causing.... well it had nothing on the Sinemet. I just could not stay off the toilet and it was impossible to continue with them. My doctor has made a note of it and i now have to wait and see what the consultant can suggest as a next step. I am still determined to stop the Ropinirole but not sure what my next option is. I have tried Gabapentin and Tramadol neither was of any use to me. The main problem is not knowing which meds i have read about her are available to me in Britain to be able to suggest to the consultant. He seems willing enough to listen to any suggestion i might have but in the end it will be down to him. I go for the brain and spinal scan next week and am hoping that will show something. So far i haven't heard anything about the bank of blood tests he took but i will need to check with my GP on that as he did promise to let him know if there was anything he needed to attend to. Meantime i will look at the link you have given and even email the doctor to see what he suggests. Thank you very much for your concern on my behalf and for the link. I will certainly let you know the outcome.

  • I have been diagnosed with RLS for over 30 years and finally after long years of nothing working I have been on Ropinrole for 3 years now, and I take 3 x 500mg at night, I settle down after about 10 minutes of taking the tablets, and I get about 3 hours sleep before they start to act up again, but they are not as bad as before the tablets, more like the urge to keep moving my legs not jerking. The sensations (of the alien crawling through my skin) stops after I take the tablets.

    I was advised that the Serium Feritin in the Blood can affect RLS, I have Thallassemia Iron Deficiniency so get my SF tested regularly, as I notice my RLS get worse if this is low.

    I also have Fibromyalgia and this is a common condition with RLS as is Irritable Bowel Syndrome, but then if it is not pain from Fibro, it is jerking legs from RLS, and then I get frustrated and stressed and wehey that kicks in my IBS, so rush to the loo. Never ending story....

    I take Pregablin for the Fibro, and Loperamide for the IBS, gentle exercises before bed, sometimes work, but I am going through the early menopause and night sweats and hot flushes make my legs hot and then my RLS start, again,

    Oh it would be good to have a good 8 hours sleep without stopping and starting, and going for a walk in the very early hours to get them to settle than back to bed again for another 2 hours sleep, I have shopping trolleys instead of bags under my eyes !!

  • Its nice to know you have found some relief but as you say its a never ending circle where one thing starts off another. Be very watchful with the Ropinirole as i have been on that for years, though my dosage is a lot higher now, and augmentation has kicked in well and truly. My consultant suggested tapering off them while working in the Co-careldopa which was in fact worse when i tried it. Not sure what is going to happen next as i dont see him for a few months yet. My bloods were tested for all sorts including the iron, feritin etc were all normal. I am now waiting for the results of a brain and spinal scan. I was interested to hear about the Fibro as my daughter has been diagnosed with that and am wondering if in fact i too have it now. Can you tell me how it affected you and how it was diagnosed. A questionnaire i filled in after an unrelated op made some suggestions regarding my answers and its possible i also have IBS but they gave such a variety of possible answers that i am wary of losing sight of the RLS in terms of finding a new drug to control it. I understand what your saying about the early menopause because i went through that some time ago and i have every sympathy for you. Any heat sends my legs off into RLS even with the meds. The frustration and any stress leads to them 'kicking' in also and i fight to keep myself calm so that my legs stay calm (not always with any success). Sleep deprivation is one of the worst things about it and like you i am lucky if i get 3 hours a night. Like you say shopping trolleys instead of bags under the eyes. I take it your from Britain too. Does RLS run in your family as it does mine or are you the unlucky one in your family. Have you any cement or laminate flooring in your home. I used to find this helped when i walked on it or if you can stand it ice bags to cool down any part of the body thats overheating ( i now find its when my hips or rear cheeks get hot) and sometimes have to persevere with the ice bags for relief. I have mentioned to a few friends about this site and since then have found a number of them also have RLS which is a comfort in one way because i used to think i was alone in this and my ex husband used to make fun of me because he never understood the problem nor did a lot of my friends. All we can hope for is that one day in the future someone will find something that will help a lot more than we can find at the moment but as theres not a lot of research into it that wont happen in my lifetime.

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