I had PD for 5 years, now, have Dystonia and Dyskinesia after took Sinemet, Doctor asks me try Rasagiline, I worry that I take too much med. Dose anyone have experience of Rasagiline？
Have someone tried Radagiline: I had PD for... - Cure Parkinson's
Have someone tried Radagiline
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Grandsonlover
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I had a typo of the last post, it should be Rasagiline ， not Dasagiline
It is a good medication and unlikely to do you any harm.
thank you very much for the info!
I've been taking Rasagaline 1m since 2010. You're lucky that their patent has fun out and it's now affordable. In my case, it has been very good, let's me take less sinemet and seems to slow progression. You need to watch out with interactions with other meds and even foods and natural supplements.
Just been prescribed rasagiline. No drug interaction issue but I take a boatload of supps and so your comment intrigues. Drug interactions are listed on NICE but where can I get supp interaction info from please? Thank you and best.
I basically agree. I have used Rasagaline on-and-off for years but you should be careful about the others meds you take, including some sold over-the-counter that have contraindications for MAOIs. Plus if getting novocaine please let the dentist or doctor know you are taking an MAOI as Rasagaline can prolong the effects of a common combination of ephinepherine and lidocaine/novocaine.
Not trying to be an alarmist, but the feature of Rasagaline that annoyed me most was I had to stop before taking Affrin (OTC nasale decongestant). This line was pulled from Medscap site. "Taking MAO inhibitors with this medication may cause a serious (possibly fatal) drug interaction...."
I am also a Parkinson's patient for last five years. As per the best of the neurologists, rasagellin is given in the initial stage of Parkinson's. It doesn't work at the later stage. Now I am on Amantadine 100 mg once a day, pramipexole 1mg twice a day, syndopa 125+entacapone 200 mg thrice a day, Betacap TR 40 once a day with physiotherapy. I am able to manage my work.
Thank you very much for the info! My biggest problem is dystonia, it’s any med you are taking can relief it?
Yes . I am also suffering from whole body tremors. Doctor initially suspected compression of any nerve in the vertebrae but it was not as per the MRI report. However, my Blood pressure fluctuates a lot. ECG and autonomic function tests were done and then these medicines were prescribed. Please do lots of yoga and exercise which works equal to medication. I make my brain to work with minimum feeding of medicines thru yoga and exercise. The more you take medicine, the brain will get dependent on medicine and slowly all medicines will Stop working.. Accept the life the way it comes. Be happy, do exercise and keep busy with less medicines. Cheers!
Thank you very much for the info and advice! You are right, I should do more exercise instead of increasing med
>"rasagellin is given in the initial stage of Parkinson's. It doesn't work at the later stage"
Not true as far as I know. Do you have any evidence for this?
I was put on Azilect (Rasagiline) over ten years ago when I was first diagnosed. I was told by my neurologist that if taken early, it might slow progression. Today I still walk without aids and drive and carry on a relatively normal life. It didn't do much for my tremor, so I was also put on Sinemet. My understanding and experience is you take Rasagiline when 1st diagnosed or early on to slow progression. I don't know if it will help you with your symptom or have much effect after 5 years, but it's safe to take.
got you, thank you very much!
Rasagiline was initially believed to help slow the progression of PD, however that theory has since been proven to not be true by several studies.
One of the largest studies conducted in Parkinson’s disease reported that rasagiline, currently used to treat PD symptoms, may also slow the rate of disease progression.
A Double-Blind, Delayed-Start Trial of Rasagiline in Parkinson's Disease | NEJM
I have also seen anecdotal evidence that support its effectiveness especially when taken when first diagnosed. It surely seems to have worked for me.
Got you, thanks!
I am a patient and not a doctor. I am being treated by a Director, professor and head of department of neurology who has published many research papers. On asking about rasagellin ,which he discontinued, told me this.My treatment started with rasagellin five years back and gradually the doctor kept increasing the drugs by either increasing the dose or changing the medicines but rasagellin was discontinued after two years.
If you have any evidence, please let me know so that I can take up the same with my doctor.
Got you. Thank you very much!
thank you! I just started taking Rasagiline 3 days, it make me feels tired and Exhausted
All prescription medications for Parkinson's are for symptom relief only. If it makes you feel worse do not take it.
My only symptom is double vision. I take Rytary at 7AM. Then I have no problems until it wears off sometime between 2 and 3PM. Once it's worn off the double vision comes back. So I take the second capsule around 1PM and a third casule around 9PM. I tried quitting Rytary. I developed no side effects from withdrawal. But the double vision comes back.
Technically I don' t know that it's double vision. If I see two images and close one eye the double image stops. That tells me it's actually a lack of convergence. The two eyes don't come together and thereby produce two images side-by-side. I'm trying special contact lenses made with prisms to whether that might help.
I started taking it since dx 2 yrs ago, is a med that helps dopamine to last longer. Some study even suggested that it can be neruo protective. The only downside is you can't take certain cold meds with it. Ask ur Dr or Rx.
WWP was given it but was given 1mg where if you read up on it, it should start of at 0.5mg then increase to a maximum of 1mg if it has no effect.She also had a bit of dyskinesia in her left side not observed by MDD or nurse in any visit but I saw it as I'm with her 24/7.
Was on Rasagaline for 18months but didn't notice any difference,.
Last year, asked MDD if it was necessary to have it as it states, can cause dyskinesia ( same as levodopa).
MDD said best keep her on it as she had 'cramp" like symptoms on her left leg (dystonia?).
4 weeks before seeing MDD, we noticed her leg cramp had gone and still has, I had been given her 500mg vit b3 twice a day ( nicotinamide ) and 100mg coq10 (,onceca day) but not for the dystonia or dyskinesia, it may be a coincidence that it disappeared, no peer review paper to back it up lol.
Dyskinesia has also gone.
Mentioned this in January to MDD but was given no responses.
MDD took her of rasagiline.
Just to mention, during the time of taking rasagiline with the co-careldopa her gait got worse but by taken her of rasagiline never made any difference.
Her gait is still bad.
( also cut the B3 to 250mg once a day) Hope this helps.
Interesting about your b3. I stopped my RLS by taking 500mg daily of b3 nicotinamide Riboside.
What brand of B3 do you take? Do you mind to describe what your RL was like? My husband suffers with RLS which appears to be coming from his Sinemet and he is asking these questions. How did you get the idea to try the B3?
I started .with 500mg TruNiagen which is b3 nicotinamide Riboside and it helped slightly but when I increased to 2 x 500mg daily RLS stopped completely. It was when I went to bed and started to relax and try to get to sleep that the tingling and kicking movement started. Difficult to describe. I have now been clear of RLS for 2 years and now only take 500mg daily. It is expensive but worth it for peaceful nights
Apologies should read 300mg NOT 500mg
Thank you. I shall look for some B3 for him. Do you also take Sinemet?
Yes I take Stalevo for my Parkinson’s and TruNiagen for RLS.
I have a serious Dystonia and Dyskinesia after taking Sinemet and Modopa some time Mucuna. I found that the best way to reduce Dystonia and Dyskinesia is to reduce the daily amount of medicine you take. But I found that after taking Fish Oil and to reduce the daily amount of Sinemet and Modopa some time Mucuna, Dystonia and Dyskinesia was reduced alot.
Have you looked up Laurie Mischley and fish oil
What does she say about it?
4mg DHA for a month or two then 500 mg citicoline twice a day.Watch her video
Oh I see, this is specifically for l dopa dyskinesia.
Watch it and listen
excellent material x L Mischley thanks Allypally49
she has many videos ... not sure how to search for this one
To clarify my understanding and experiences, dyskinesia is a result of levodopa (and perhaps other) medication. It can occur when dopamine levels are rising or falling. Reducing medication can help. The painful cramping and twisting of muscles caused by dystonia are from not enough dopamine. They are a symptom of Parkinson's and require dopamine (through some form of medication) to reduce its severity and occurrence.
I was diagnosed 7 years ago ; had reasonably symptomatic bradykinesia/ rigidity and dystonia at least 2 years before but was in denial. A DAT scan showed bilateral putamen involvement in 2017.
Started Sinemet and Rasagiline together. Developed dyskinesias pretty soon (within 3 months) which disappear when off (Dystonia recurs when off)
Rasagiline is meant to slow down the breakdown of L dopa in your blood. The disease modifying effects did not hold up to scrutiny in prospective studies. I have not read them myself.
Tried stopping rasagiline (just a trial suggested by current neurologist Year 6 and my Ldopa requirement shot up after a week; this is standard time for washout)
By and large my requirement has been stable for 6 years but I have to take small doses of Sinemet (50 mg/12.5mg) about 8 times a day. If very regular I have excellent function and do most things independently. Even my handwriting normalised.
The only non motor symptoms I have had is sleep disorder since teenage and loss of smell since 2011. I had also started slowing down in 2012 (on hindsight). Curiously never had constipation but even a bit of fullness from any meal can interfere with my absorption of levodopa.
Again I guess every individual will have their own response. I could not tolerate safinamide after 3 days.
I think if something makes you feel worse it is worth trying to stop it with some advice. I do appreciate sometimes the advice is not very helpful 😕
Rasagaline: I've been on into for a couple of years (from India $96 per 100). I had heard it went generic and so was going to order it through Medicare Advantage and didn't reorder out of India. Mistake! The generic cost as much but only for one month. So I've run out. Thee result is interesting. While on it I noticed no effect. Off it my dyskinesia is noticeably worse. Hopefully things will get better when my Canadian/India order arrives.
than you very much for your detailed reply. I start to try Rasagiline for just two days, it reduced the pain of dystonia, but, make me feeling tired. Especially if I take 12.5/50 Sinemet 7 or 8 times, I went back to 25/100 4 times per day,
As suggested by many others here, the aim is to reduce the total amount of the L dopa dose (Sinemet in my case) if that is causing the dyskinesia. My dyskinesia was very sensitive to the peak level after a dose. In other words they come on at a much lower peak .
Others get dyskinesia as a symptom of their trough or dip in Ldopa and will need a different approach
Hope you are feeling better.
Thank you very much for the detailed info!
hi do you mean Rasagiline?
Yes, it worked for me with Kinson.
The most important advice is al ready given by pearlette, to reduce the C/L dosage and take it more frequently. Typically, the first dose in the morning should be a bit higher, depending on when dyskinesia problems occur. Try 6 x 12.5/50, or even 5 x 12,5/50, with the first interval slightly shorter.
In addition, you will need to improve the absorption of levodopa. The main culprits may be constipation and perhaps a poor sleep regimen. If you address your dosage and absorption issues effectively, additional medication is likely unnecessary.
Thank you very much for the advice! For me, I should try this way. I need 8x 12.5/50 .
By achieving a better distribution of your medication throughout the day, you may require less total levodopa/carbidopa (C/L). Try reducing the dosage (7 x) if possible!
OK, I will try. Thank you!
I'd like to know how long your dystonia or dyskinesia lasts and where in your medication cycle it occurs. I get an hour of dyskinesia/dystonia/intense tremor when the C/L wears off. If I medicate again before the dyskinesia has worn off, I get no benefit from the C/L. It seems that that the dyskinesia is the price I pay for the bliss of ON time.
I got the dystonia and dyskinesia after took Sinemet one hour for over two hours till the med off time.it seems my left body does not like Levodopa.even I take 12.5/50 of the med, it happens anyway, till off time
I’m so sorry for the late response, but I take Rasagaline . I’m at around six years. I’ve taken it pretty much from the get-go and I have never really even noticed it.
I started it as an add-on to levodopa. It’s hard to tell now what’s working 100 percent but Rasagaline seems to be quietly boosting levodopa in the background. In fact , it’s the one drug I’ve not felt side effects from. You do have to be careful about other meds but apparently this is an older MAO so the warnings are somewhat up mitigated by that.
Of course, be sure to ask your doctor about interactions.
And that’s not a scientific answer to your post at all but I hope it helps.
Thank you very much for your info! You are right, I got a list from my doctor about the interactions with other med. I just took Rasagiline few days, it seems reduced the pain of dystonia. Hope can see more positive result after one or two weeks
You’re welcome! I’m sorry I took so long to get back to you. That’s good that you got the list. And that it’s helping dystonia. I didn’t have dystonia when I first started taking Rasagaline . But now I do. I don’t think of it as a affectHe Dystonia for me anyway but then again maybe it would be much worse without😳. But I’m glad it’s working for you . I hope you continue to like it so it’s another tool in the toolbox. 
Thank you Godiv!
I took Requip initially and it was awesome for several months and I slowly developed obsessive compulsive disorder which was a disaster! It’s in the literature just read up on it and trust those around you.
What is Requip? (Two of our children have developed OCD, so I learn all I can.)
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