Hi everyone. 16 months after dx not on any meds. I am now slowing down and everything is getting a bit harder to do. Tremor is still not too bad coming and going depending on how tired / stressed I am. I think it is now time to start on the meds. At my last hospital appointment (March) I was told I could start when I felt the time was right. I was given the option of Elderpryl (selegiline) or Requip (ropinirole)which I know is a DA. I know someone out there will have been on both these drugs and I know that we are all different,but can you let me know of your experiences so that I can weigh up the pros and cons of both. Thanks
The trouble is that these drugs have different effects on different people so I could tell you requip works for me (which it does)but it might make you vomit constantly and feel like death (Mirapexin was not pretty).
Unfortunately, the only way to determine which works for you is to try them.
hi syke,im on mirapexon and sinemet,ive had pd for 11 half years,couple years ago i was on mirapexon,but on 8 aday and i had awful side effects,so they were reduced,and now im on 4 ,my pd was deffo effected by the change,but least i dont have those effects no more.sinemet i could not say a bad word about,its nown as the gold drug,and i would back that.but as you no we are all different and we all react to drugs in different ways,the best advice you could have is speak with your nurse or neuro,speak to the helpline of puk,for guidence as well,community members will give you advice like your askin for as well.and i hope you choose wisley,and i wish you luck x
I have been on both, still on selegiline (which I will call S) and Ropinerole (R).
type S = MAOB inhibitor - stops MAOB from tidying up loose dopamine R = dopamine agonist - pretends to be dopamine for some cells nut not all
obsessive behaviour S = no affect R = one of the biggest culprets, dose dependant
titration S = none or little but dont stop taking R = long titration up and down doses
effectiveness S = possibly negligible if you have little natural dopamine and not taking ldopa
R = usually effective but not for all symptoms
other effects S = quite a few potential, oedema, can cause high blood pressure if stopped suddenly or too many taken R = nausea, sleepiness, some others
interactions S= quite a few and its effects last several weeks in the system R= not many doesn't last too long
the long lasting versions of ropinerole usually work better. most people get azilect instead of selegiline - but its much more expensive. personally i found selegiline possibly more effective than azilect but more side effects
if you go on selegiline on its own, it will probably only be for a year or so when your natural dopamine is further depleted.
ps there is no reason why you can't take both but your neuro will want to start with one or the other. its usual to start with a MAOB and then add the DA but each neuro has their own way of doing things, hence selegiline instead of azilect. the only reason i am not on R is that it is not available where i am. i found it very effective when kept within guidelines though non-extended version made me fall asleep.
horrible word 'drooling'. but i have been doing a bit. consensus seems to be that its not the medication but pd causing either excessive saliva or to long intervals between swallowing. my guess is both! there are treatments to reduce saliva but they look to me to be rather severe and may result in not enough saliva which is probably much worse!!!
Thank you Turnip , No win situation . The reason I thought it might be the medication is because seems to happen more about 30 mins after he takes his Sinemet . When at the same his eyes involuntary close and he has sudden sleep episodes . .
Because of the this we reduced the Sinemet from Plus. to 110 mg , could have been barking up the wrong tree and he might have needed more not less ..
Still not sure which one, sometimes its harder being given a choice. Will go to my GP and get the ball rolling anyway. I don't know if he will prescribe or if I need to see the PD nurse.
On a better note I am going on holiday at the end of this week so don't want to start anything in case it gives me the dreaded lurgy or something else equally pleasant. Take care
Drooling (I agree with Turnip horrible word) is very common with PD and a lot to do with lack of swallowing, some people have a mint or boiled sweet and that seems to help, you can also get medication for it. My husband has had several chest infections this year and this is caused by him aspirating to much so I have asked for him to be referred to a speech and language therapist as they can help a lot in this area. I hope that helps a little. best wishes vivian
Hi. I started Azilect 6 months ago and Neuro told me it appears to have a protective effect. However, I was first prescribed Madopar, then the DA Mirapexin (1.05 mg 3 x daily), then Azilect which has helped enormously in conjunction with the Madopar and DA.
It took me at least 6 months to build up to the 1.05 mg 3 x daily dose. I was sleepy and felt "weird". However now I have no problem taking it.
My former Neurologist prescribed me Requip which I disliked and I was able to stop it as did not have many symptoms at the time.
I feel that Pramipexole which is branded as Mirapexin is preferable to Requip (but I live in France now where they dont prescribe Requip much as far as I can see).
I feel you have been given a Hobsons choice. Surely the consultant is in a position to know whats best. Good wishes.
we have to rely on our consultants, but if a patient went to two different ones, they would probably get a different regime = there is no agreement amongst neuros about what to prescribe. if you dont like what you get be vocal about it. some people suit one thing some another. no drug is good in itself, only in relation to the person taking it.
I was prescribed Azilect (new version of Selegeline) as was told it MAY be a nero protector. I didn't think it worked on it's own to start with but a year on i'm wondering if it took some time to build up?? anyway, main reason for me is the possible neuro protection. I'm now taking just 1 2mg Requip XL (slow release) tablet daily and am doing well with little change to my initial symptoms. I was reccommended to day 3 tablets daily but didn't feel the need. My advice is be prepared on the different drugs available and the group they fall into, listen to what the doc/neuro suggests, go away and read up on prescribed meds then re-evaluate what you think the best starting dose for you might be then start taking meds at lowest dose until your body gets used to them, then increase to reccommended dose or tiltrate up slowly until you get relief or feel you can/or happy to cope with the next dosage you are on. If in doubt write a list of questions and go back to neuro/doc before your ready to start, also once started keep a daily diary of how you feel/symptoms and look out for any patterns ie stress high so feel worse, cope better am/pm, notice meds working/wearing off etc etc.
Whatever you choose to do, remember the advice everyone on here gives you, that your PD and treatments/meds will be unique to you and how your body copes with them!
I dislike the word DROOLING as well don't like dribbling eith sounds like a baby .. Can you think of a different way to describe it . It's almost as if he is unable to speak because he is running such a lot of the time . Especially about a half hour after taking his Sinemet . He has been on them for about 6 years . I keep a tissue tucked into the neck of his shirt .
hey all @ tthe forum i have an consult next nweek and wondering what to ask her any tips ? usually i go and its 10 mins and your out which has suitedd me lol but lately this dyskensia is worse than ever i am on 750 of sinemette plus 6 mg of ropineral and 750 stalevo . The problem is after taking my morning stalevo and sinemette my legs seem to dance around of there own free will and i have no control at all .U have been told about surgury but do not fancy it because of reports that i have heard (more like horror stories) any help will be awesome ty :~}
there seems to be three main routes for levadopa induced dyskinesia- 1. amantadine - a slightly dodgy drug in my opinion, but seems to help 2. ecstacy - which is illegal 3 dbs - which reduces the need for such high doses of l-dopa and in itself reduces the movements
there may be other options like powerful DAs.
and unless i am mistaken (quite possible) thats the choices.
Turnip is right they are the choices I am afraid, unless you can reduce the sinemet you are stuck with it, My husband had a palidotomy many years ago, this has been replaced with DBS, it is worth researching this a bit more as some people find it works very well for them. My husband had dyskinsia for eleven years before his operation at the age of 51yrs and is almost 69 yrs now, he hasn't had a problem with movement since, so it was worth him having the op as far as we are concerned, his movements were really so strong and he couldn't sit on any furniture, we treid a bean bag but it was so noisy it drove us all mad. We used to have to stop in any layby or people's gateways so he could get out of the car and stretch, hence we didn't go far. all the best whatever you decide to do vivian
hey all@ the forum have just read something about the use of cannabis used for the treatment of the symptoms of pd any7one got anything to add or have anyone had any experiances with this
Hello Folks, I have been taking Mirapexin 0.18mg three times a day for six months and find that they make me raging angry and that my behaviour is agressive and threatening. This is a low dose. I did move up to 0.35mg (three a day) for a few weeks but could not take the psychosis and mental irrationality that they caused. The Mirapexin reduce my stiffness, anxiety and aid my movement but the side effect of being in bad temper is wearing and also offending the few people that I now mix with. I asked the Vet if I can change meds and he said one DA is much the same as another; you are depressed, have a box of happy pills and carry on. When I explained that I cannot function in any normal manner with the range of symptoms that I have, he seemed to think I am exaggerating my condition. I asked if it is practical to try a levadopa such as Sinemet and he advised against it as I have only had symptoms for a year and am sixty one. Does anyone else get this Mirapexin rage and do you have any suggestions on the way forward to a better balanced personality? Arsene
I have not so far taken d.a.'s because they often put you straight on to sinemet if you are in the 70's but I go on this site and others every day and your neuros comments that all d.a.'s are much the same seem a bit dubious to say the least. He must know something that all the other neuros don't know because it is common practice to try another one if the one you're on doesn't suit as it is universally accepted that people react differently to PD drugs and indeed drugs for other illnesses. For example, some people even react differently to sinemet manufactured by different companies because of slightly different constituents besides the main drug.
As regards trying to explain why your symptoms affect your daily life this is something I have heard from others about their neuros. What a pity they don't seem to venture on sites like this. They might get a bit more insight into how PD affects people day to day.
I'm lucky in that I have responded extremely well to alow dose of sinemet and Azilect and have therefore resisted the suggestion that I take d.a.'s for the best part of two years. But it doesn't stop me from seeing how symptoms would affect me if I had a family to look aftger or a job to keep
depending on how tired / stressed I am. I think it is now time to start on the meds. At my last hospital appointment (March) I was told I could start when I felt the time was right. I was given the option of Elderpryl (selegiline) or Requip (ropinirole)which I know is a DA. I know someone out there will have been on both these drugs and I know that we are all different,but can you let me know of your experiences so that I can weigh up the pros and cons of both. 