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Didi

Your opinion on Azilect -- will it delay progression?

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Hello, My husband was recently told by a neurologist that he thinks he has early PD. He's running a lot of tests to rule things out. He is scheduled for a DAT scan but my husband is thinking of canceling the appointment as he afraid of the radiation risks. My husband's symptoms are very mild right now and he feels he does not need to take meds yet. He is 50 years old and has been very healthy and doesn't like to take any meds -- I don't think he has taken so much as even a tylenol since we've been married (28 years). He is very afraid of med side effects. Even when he badly smashed his finger at work(eventually needing an amputation) he lived with the pain (pacing the floor in agony) rather than have the side effects of the pain meds prescribed.

 

His neurologist prescribed Azilect, stating that it could delay disease progression. He said it would not help much with symptoms. My husband is not willing to take a drug for his symptoms yet because they are not severe enough to him. But if he felt it could slow disease progression then he would be more willing to take it. This would also make him more willing to go through with the DAT scan. He thinks: what is the point of exposing himself to the radiation if it is not going to change the treatment at this point. He feels if there is nothing to delay progression, why do the DAT scan , why not watch and wait? (I'm not quite so patient, but it is his decision).

He wants to know what the side effects are to Azilect but I am afraid to even tell him -- afraid he when he takes the pill he will have in his mind to have these side effects. But he needs to know if the benefits of the drug will outweigh the risks. My question is, with taking Azilect -- are there any side effects that wouldn't go away after taking the drug? For example I have gastroparesis for which I was prescribed metoclopramide--I quit taking the drug because the side effect of Tardive Dyskenesia can often continue after stopping the drug and unless I am so bad that I am facing a feeding tube it is not worth the risk for me. Are there any risks like that for Azilect? Any effects that would be permanent? He worries also because it is so new-- what if there are side effects that are discovered later, as happens with many drugs.

 

Also, if the Azilect does so little for symptoms, taking it would not give us a hint as to if this is really early PD --would it? I know a trial of meds (sinemet etc..) is often how they test the diagnosis but the neuro does not think his symtoms are strong enough for that, and neither do we.  My husbands symptoms are primarily a shuffling gait, rigidity, and bradykinesia (all of this very mild, only those of us very close to him or very perceptive people notice--plus the neurologist) He does have a slight hand tremor which acts more like an essential tremor. Would Azilect do anything for rigidity and bradykinesia in PD?

 

What is your opinion on the risks vs. benefits of Azilect. I have heard it is controversial, but what is your opinion on the possibility of Azilect slowing disease progression. Is there strong enough proof to take it for that alone--not for symptoms. It's also very expensive so that factors in as well. This also factors into his decision for the DAT scan.

I would really value your opinion. Thank you for your help!

 

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My only issue with this is taking a medication for a disease you may not have. There are actually 2 ways to tell if the symptoms (no matter how small) can determine if someone has PD. I call the the Dr WAY and the MY WAY.

1) DR WAY: To give sinemet, starting at a low dose then slowly increasing it every 2-3 days. If the symptoms decrease or stop, then the person probably (close to 100%) has PD.

2) MY WAY: Now this is not 100%, but it is very, very close. If a person drinks alcohol and their symptoms go away, they probably DO NOT HAVE PD. Alcohol will react on the nervous system my decreasing the symptoms and not affecting dopamine levels. That is why if someone drinks alcohol and the symptoms do not go away, the person probably has PD, because alcohol does not affect dopamine, and the symptoms will remain. All other nervous system issues, essential tremors, etc, symptoms will continue because they are not regulated by dopamine.

So, back to the azilect, it is a good idea to take it if you have PD because it is a neuro-protectant and will protect the dopamine cells. But, for example, the person does not have PD. Let say they have a condition that is cell related (ie. Cancer), it is not known if the azilect will protect the cancer cells, thus making them very difficult for anti-cancer meds to irradicate those cells because they are protected. This is why I question using it without knowing whether or not you have PD.

I hope you see my point and really think about it before you take it. I really think trying the sinemet test before you take the azilect.

Keep me posted.

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Well, there has never been an exact amount because this was an old fashion way of testing. I am guessing maybe 2 beers.

Like I stated the sinemet tests is more accurate, and this alcohol test stopped being used about the same time drug companies stopped tasting urine for the taste of sugar to see if someone had diabetes (yes, that is true).

So, like I say, the sinemet test is more accurate. The alcohol test is old, but can still give someone an if the it is PD or not.

Just an idea and not recommended for alcoholics or not to ne done in a bar setting.

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I just discovered that you responded to my question. I had been checking for a while for your answer and I am on here frequently, but somehow I missed it.

Thank you so much for taking the time to help strangers, I appreciate your kindness.

 

Since my original post  we have some new information:  my husband has had a Dat Scan.

The Report Read:

 

FINDINGS: On the right there is diminished striatal signal in the putamen. On the left there is no striatal signal in the putamen

 

IMPRESSION: Abnormal examination. There is diminished striatal signal in the right putamen and complete absence of signal in the left putamen.

 

We are thinking that now with these results and the Neurologist's stating he felt my husband had PD, we now can feel pretty confident that he is a PWP.

The neuro didn't seem to want to give sinimet yet since my husband's symptoms are still mild. He is an older neuro, and I get the impression he likes to delay sinimet until symptoms are more severe.

As for the Alcohol test -- you may not believe this but my husband and I have never had a taste of alcohol in our lives. For personal and religious reasons we don't drink. So I'm not sure he would want to try that test, but it was a great idea. But being sick changes things somewhat completely. We also used to be an all natural remedies family -- don't even take OTC for headache. But since I came down with my own chronic illness I have given in and taken meds, and with my husband now having PD we realize that he will have to do the same. It's just scary to have to take meds that affect the brain so specifically -- with the possibility to change personality, behavior, etc.. but I suppose the disease itself can do that as well. We know eventually he will need them - -the question is how soon.

 

So, we are still back to the original quandary. The Neuro prescribed Azilect saying it delays progression. And so I've been researching online and asking opinions of everyone I can on whether it does or not. I sent a question to Dr. Okum and he said it was controversial, as to whether it actually does slow progression. It seems different neuros have differing opinions. I've read the ADAGIO study and that seems promising but you can't base a decision on one clinical trial - can you? You mentioned that Azilect is a neuro-protectant? In what way? -- are you referring to the delay in symptoms progression in the ADAGIO study in those who took Azilect sooner? OR does neuro-protectant mean something different altogether? OR is there different research. I'd appreciate if you could expand on that or give some links where I can study into it.

 

My husband's symptoms can be bothersome-- he complains a lot now of right shoulder pain, and I am suspicious that it may be from rigidity and lack of arm swing -- he always holds his arms stiffly and a little bent at the elbow when walking, and the right side is  worse. But he thinks the pain is from an old injury 20 years ago. But because it's bothering him so much now has me thinking it may have something to do with PD or at least PD is aggravating it. He does get frustrated some with slowness and stiffness and shuffles his feet when walking. But still, he can still do all of his daily activities and most people don't notice. The slight ocassional tremor he has is not an issue at all. So the symptoms are not quite enough for him to want to risk the side effects of the Azilect yet-- unless there is a good possibility that it will delay progression -- that is our dilemna.

 

Also -- how risky is Azilect?- and as for the side effects are there any permanent side effects if he tried it (for ex. tardive dyskenisia from metoclopramide can sometimes be permanent). The risks of the drug will also weigh into his decision.

 

Thank you again for all the time you put into helping people. It is truly a blessing!

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I agree with Dr Okun. It is questionable whether or not it stops progression of PD. In some studies it has shown to to neuro-protectant, but not all studies agree with that either.

Any of the side effects show that they will not be permenant, which is a good thing.

Many of the Dr:s are starting with sinemet at earlier states of the disease. The believe of waiting until symptoms get worse really seems like a belief of the past.

Why wait to increase your quality of life when you can do it now.

Maybe, if the Dr does not want to try sinemet, maybe he could try something like requip. Once again, it must be started at a lower dose and increased slowly.

If you are not happy with what the Dr has done so far, you can always go and get a second opinion. It might be a good idea because it sounds like you are not happy with the decision he has made.

Most people with PD have multiple issues that cause multiple problems. This problems, mostly, are not going to be taken care of by one medication. It may take a few tries with a few different meds before any benefit may be felt or seen.

Please keep me posted on what you decide to do and what you find out.

Keep me posted and I hope this helped.

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Eddie310,

I was going to ask the same question, how much alcohol. Interesting, I have an occasional beer or a bailey's but I have never stopped to notice one way or the other.

Guess I'll have that one beer tonight!

 

Thanks Mark!

Cheers :-)

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Cheers, but remember I said this an old time test. So, shakin' not stirred and be responsible.

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