My Friend started Azilect on the 7th - last Sunday. From Monday his dykinesia has become worse.

We have tried to reduce the Sinemet - 25/100 made into a solution and drank twice within the same time window as the 25/100 dose, but it is of no use at that reduced level.

Before he used to find the mornings to be relatively free of symptoms, but now he wakes up feeling weakness in the legs - perhaps a seperate issue?

Is there anything else that can help with the dyskinesia? We tried Amantadine, but that did nothing. How long does one need to wait to see any effect while on it? He was on 100 mg for a week and then 200 mg for the next two.

It is a very confusing time. I really did think that the DXM was helping with the tremor as well as the dyskinesia, but now with the addition of Azilect we've had to discontinue that.

This is freaking scary.

Hi,

I don't think I've replied to you in the past but do follow your posts.

I have had a negative reaction to Azilect and had to stop it early on- it can cause very severe joint pain. My dyskinesia did not begin until I started a cocktail with Azilect. Funny, how levodopa is always blamed for causing dyskinesia; I had absolutely no problems with it as monotherapy. I think many times it's the ill-managed drug combo that does us in.

I have been on three different med regimes and can say that without a doubt I felt the worst with Azilect in the picture. I originally started on Sinemet but after several months, my doctor put on Sinemet, Azilect, and Mirapex. Ugh! I felt simply awful; it was way too much dopa at one time and since none of these meds deliver a steady, low maintenance dose that is predictable and reliable, I ended up with severe spikes where I had too much dopamine going on and felt like I was buzzing around the room, but on top of it all felt a general malaise or sense of illness; almost like a weariness in my bones that made me feel at least 20 years older. The down times when the meds metabolized were equally as harsh. Oh, and the topper...hello dyskinesia! I hadn't experienced it until left to fend for myself on this too potent a cocktail; it felt toxic to me. My neuro did not direct me on how to fine tune everything, so I ended up, in my opinion, burning out on the meds.

All I can really do is commiserate and say that I feel that really the more medication we layer on in this disease, the worse we feel. Once you end up with a layer cake of meds, it can be difficult to discern if one or two things or a combo thereof is causing the problem. I an not anti-med but have never believed in taking a little pill for everything under the sun, so I am a very skeptical and cautious medical consumer. Obviously, I get even more frustrated when a doctor suggests adding on yet another layer (like Amantadine) to counteract - in my opinion it simply compounds the problem.

My approach to PD management is the old KISS method. I use the bare minimum of different meds to see me through. I understand that Azilect is prescribed because it may beneuroprotective. They have been trying to prove that some time now and cannot come up with any really convincing data to prove this. The most recent study yields contradictory results?!? Yet, neuros hand it out like candy on Halloween. No disrespect to those who take it and who do well with it, but I don't feel that I am deficit for not taking it- I am simply not convinced.

I too find that the DXM does help with dyskinesia and helps my meds kick in during the day when needed. I would much rather put my faith in that as neuroprotective especially when we have real people who can attest that it seems to be helping them in the long run; I have yet to hear anyone say the same about Azilect.

I don't know what I can suggest on meds but to say you are on the right track in trying to keep as low a steady dose of dopaming going at any one time; this does a tremendous amount in managing the extra movement. I'm thinking that usually a regular Sinemet tab is used to kick start everything in the morning. Have you tried this? I am also thinking you may need to space out the first Sinemet dose of the day from the Azilect by maybe an hour? The Sinemet has a short 1.5 hour half life so within an hour a person is already winding down.

Sorry I can't be of more help on meds; I'm sure our more informed members will be able to offer some guidance.

Laura

Thanks Laura, I read your posts with much interest. You have quite an ability to assimilate and then express that information - I find that admirable. I have gained a lot of perspective from what you write.

I am also worried about this 'layering'.

In the middle of December it was Comtan - started with 100 mg and a week later was increased to 200 mg. The resulting tremor was just too awful, and since the doctor was not contactable we discontinued cold-turkey. He was fine from next morning.

From the 31st of December we started DXM. Within about a week even a friend of his who is a doctor commented on how there was virtually no tremor or dyskinesia. His sleep improved. His face got some colour back and was more mobile. This of course I got him to start after reading about it on this forum and then elsewhere on the web.

Then the doctor prescribed Amantadine. I actually believe that the improvement he experienced with the DXM slowed down. Anyway, since after three weeks there was no improvement that was stopped.

Latest is Azilect.
I really would like him to drop all this and get back on the DXM, but I am afraid to question the 'specialists'.
Either way I have no idea what to do, how to help.

We should travel out to see if there is a Neurologist/Movement Specialist who we can depend on a bit more - who is perhaps more familiar with DXM, but there again we have no idea where to go and who to see.

This is all so very frustrating.