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Parkinson's Disease
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Posted 5/5/2009 12:29 PM (GMT 0)
Hi
Is anyone on this Rasagaline - (Azilect) treatment ??
They are currently giving it a lot of publicity in my country at the moment .... saying that it can even attentuate/retard the progression of the disease. Has anyone tried it ?

Best wishes to all

Jen
Posted 5/13/2009 5:11 PM (GMT 0)
We are in UK.My husband's neurologist insisted he start it straight away as he is adament that trials show it slows progression.  He felt a bit sickly after taking it and was dizzy off and on but that faded after about 6 weeks. He felt it was worth taking whatever the side effects for the possible benefit.We read a lot of stuff about not eating mature blue cheese or drinking red wine etc. Doesn't seem to affect him though.

Posted 5/13/2009 5:32 PM (GMT 0)
Hi Sherwood
and thanks so much for replying.
I got sick and dizzy when I started Akineton (Biperidine) which luckily wore off after about 10 days.
My Prof did not give me Rasagiline - but Jumex 5 (selegiline) which apparently is along the same line.
I only got diagnosed less than a month ago and I am increasing meds very slowly.
One thing he did want me to take was RODIOLA - basically a homeopathic version of Selegiline acting as a MAO inhibitor.
It can't do any damage even when taken with other meds - so I'm giving it a try.
I also take 5-HTP and St. John's Wort and have been on them for nearly 2 years - they have really boosted my general morale.

Hope your husband is well

Jenny
Posted 5/14/2009 3:59 PM (GMT 0)
Hi Jenny, Yes he does keep well. Only thing that gets to him is his writing isn't as good as it was but we still dance evry week and get about. We read that the tango was really good therapy for people. He also takes Co Enzyme Q10 600mg in 3 doses of 200mg. It is a bit expensive but it has been shown to help and at the moment some trials are going on to see what dose is most effective. To be honest I think it's so that if it's available on prescription they can use the lowest effective dose and keep costs down!
Posted 5/14/2009 8:29 PM (GMT 0)
Hi,
My husband (52 years old) was diagnosed last Nov (08) with early Parkinsons. He started the Azilect in late January and seems to be tolerating it very well. His neurologist is very pleased with the research/results this medication is having.

Good luck to you!
Beth
Posted 5/18/2009 7:32 PM (GMT 0)
Hi Sherwood -
Don't mention the writing .... I cannot sign things when I'm out becasue I get anxious and can't even hold the pen. It really get's to you .. it's depressing..
Interesting about the CoEQ10 - I have read a lot and was thinking of giving it a try but as you say, it is rather expensive
- I get my standard meds free on the National Health but obviously my rhodiola, 5-Htp and St.John's Wort are all full price.
Of course it's worth every penny if you get benefit !!

My Chief Physician has now started mentioning Deep Brain Stimulation - but my research on the web so far does not convince me much.
It seems to go wrong so many times - and in the end it 'only' improves tremor by 50% if I'm correct - and has no effect on any other symptom ..
I had placed my hope on the fact that Obama had given the OK for financing stem cell research - and then found out last week that he has da to 'compromise' with heavens know who, and has taken the financing away again.

quote from L.A.TIMES ONLINE
When he campaigned, Obama said he supported the "therapeutic cloning of stem cells." But as president, he has already traded that position for one that some see as more politically realistic. Under the compromise plan, the president proposed that federal dollars be allowed to pay only for research on stem cell lines created from surplus fertility clinic embryos, but that funds continue to be barred from stem cell lines created in the laboratory to study particular diseases. Also barred is financial support for creating new, genetically matched stem cells for use in the treatment of disease. That is the very "therapeutic cloning" research that the president supported during his campaign.

No comment ...


Hi to you Thunderbird - thanks for your input
What results is your husband actually achieving with Azilect ?
I apologise if I always ask so many questions .. but I'm still trying to take it all in ..

All the best

Jen
Posted 5/19/2009 7:06 PM (GMT 0)
Hi Jen, I haven't heard much about deep brain stimulation. I thought it was only used in later stage when the Sinemet was causing problems. I know of one person who had it done. He had had Krapinsons for years and was in a wheelchair and after the DBS was able to go back to gardening and was 200% better. I know what you mean about writing. My husband is OK at home [ish!] but if we're out in a bank say and someone is watching he's dreadful. I usually step in and say'He's forgotten his glasses' that works. Have you seen the thread about a new treatment under trial. It's called Pro Savin and looks promising. I think it will be sorted in the next 5 or 6 years. God Bless Michael Fox who is pouring so much money and effort into it. X
Posted 6/10/2009 2:52 AM (GMT 0)
I have early onset, currently 38 officially diagnosed at 37. Azilect and Symmetrel are my meds. I cannot say I have noticed any side effects other than they seem to help my symptoms. I have seen the research and just feel lucky that such great treatments exist today that a real hope exists for the future. I also suffer from seizures and take Trileptal and Dilantin. Dain Bramage sucks...........
Posted 6/10/2009 8:39 PM (GMT 0)
Hi Captain happy, you made me laugh!! I tell you one benefit of Krapinsons, all the things we were going to do 'one day'. We're doing NOW and having so much fun. I don't know what it's like for my husband but a lot of the time now I don't think of it. Just now and again it arrives at 2am and goes 'Whoo' and rattles it's chains. Glad the meds are helping so well that seems to be what causes a lot of angst. I bang on about it but do you dance? So much research seems to be going on about the benefit and in particular the tango. Apart from which it's such fun! [Now you'll post back to say you have 2 left feet I bet!]
Posted 2/7/2010 11:45 PM (GMT 0)
I am 56 and just was diagnosed a couple of months ago (although I have had symptoms for 7-8 years). I am on Azlect and it seems to have helped. I had no problems tolerating it which was a huge bonus as I hate taking drugs! I have a great Neurologist who strongly believes in this drug. We'll see what happens!
Posted 2/8/2010 3:41 AM (GMT 0)
I was dx'd a couple of years ago and got on Azilect right away and continue to be on it. I think it makes me feel a little queasy but 2 doctors have told me it may slow the progression so it is worth it to me. I also take Sinimet and the Azilect helps that last longer.

I agree the PD dx has a good side in that my wife and I are making the most of the present since the future seems uncertain.

Posted 3/6/2010 4:49 AM (GMT 0)
Joined this site about three hours ago.
I started with PD symptoms about two years ago. I had had surgery that went bad and developed peritonitis. My blood pressure went over the top. I thought that I had had a mild stroke. Then last summer the tremors started on my right side. In September I was diagosed with PD and was given sinemet 25-100 3x per day. Didn't fix tremors. Given Artane for tremors. It worked. I felt good. Did some reading and found that it was not best to start with Sinemet....save it for later. Asked neurologist about Azilect. He said it was expensive and did not prescribe it. WELL, I AM WORTHEVERY PENNY OF WHATEVER IT COSTS! Saw another neuro and he agreed. Been taking 1mg 1x Azilect for about 2 months. Doing great. I might have felt a little better on Sinemet but it's a good trade off. Oh, and I have stopped the Artane. No more dry mouth, etc. from the Artane. I do have mild tremors when I am talking on the phone or get cold.
For exercise I play ping pong alone with the table in play-back position. Great workout. Uses every muscle. Strange thing....I have played ping pong for years, right handed. While playing one evening in December, I returned the ball with my left hand! I have never held the paddle with my left hand before. Now I am just as good with my left as my right. Is my bran "re-wiring". By the way, my tremors were on my right side only.

Dan
Posted 3/10/2010 11:04 PM (GMT 0)
Hello Jen,

Regarding Azilect: I was on it for a short time and had heard a lot of good things about it as well. Unfortunately I seem to have bad side effects from all the PD specific meds I've taken. With the rasagiline I developed red spots on my extremities, a sour stomach and little if any effect on my PD symptoms. I have heard positive things from other people, though. These meds seem to vary so much for each individual that it is difficult to make any broad consistent statement about any of them. Whatever works, works I suppose and it's a matter of trial and error. The only med that works for me (on my tremors) so far is clonazepam - an anti-anxiety med. But again that's just me. Hope rasagiline is effective for you. As you mentioned, it is supposed to have neuroprotective qualities and that is a good thing. Also hear - believe it or not - that caffeine, nicotine and ibuprofen also have displayed neuroprotective effects. Nicotine is not recommended though - for obvious reasons. Good luck in "the great med search". :-)
Posted 5/10/2010 5:06 PM (GMT 0)
no benefit to me and $$$$
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