L-Dopa or Azilect (rasagiline) positively affecting mental states?

[zawy]

Has anyone tried going off L-DOPA (or carbidopa) or Azilect (rasagiline) and noticed a change in thinking such as being more critical of people or more easily irritated?

[JWebb994]

I take both of these and I haven't tried going off of them. However, my movement disorder specialist recommended I reduce my anti-depressant but I am already on the lowest dose. I take generic Prozac. I stopped for 6 days. Generic Prozac is at 1/2 dose at 5 days. I was such a bitch that I started back on it again. You really don't want to try to converse with me until I get back up to my previous level. She believed my Prozac in combination with my Parky meds was causing my "kicking Parky leg" in the middle of the night. Great! I am still awake with my leg kicking and now no antidepressant. I'll see my regular MD today to see what suggestions she can come up with.

[JWebb994 in reply to JWebb994]

Update: I am now seeing a different Movement disorder specialist. He stopped my Parky leg from kicking by doubling my CR med. This new doc has been very clear with me about the fact that when I am having problems, it is because my meds are "off", not lasting long enough, and I just need to take another one. He also says that our carb/lova will cause dyskinsea if we take too much but that it will stop as soon as the "over dose" wears off. I am amazed at how much better I am by just changing docs. No more pain because of stiff muscles.

[silvestrov in reply to JWebb994]

Really bupropion is a better anti-depressant than Prozac for Parkinson's disease.  But your doc did not put you on it because you are on Azilect.  Wellbutrin/bupropion in combination with an MAO inhibitor would cause a life-threatening hypertensive crisis.  

webmd.com/drugs/2/drug-1444...

Even though there is a case of a woman taking Azilect (rasagiline) with Wellbutrin and another anti-depressant (Venlafaxine):  

"Successful Use of Rasagiline in Combination with Two Antidepressants"

ncbi.nlm.nih.gov/pmc/articl...

Here are a couple links to Wellbutrin/bupropion and Parkinson's:

"Bupropion as the treatment of choice in depression associated with Parkinson's disease and it's various treatments."

ncbi.nlm.nih.gov/pubmed/207...

google.com/patents/US6277887

[JohnPepper]

Hi Zawy. Yes I have done both. In 1992, when I was diagnosed, my neurologist put me onto sinemet and symatryl. I was on these for 2 years. Then he took me off both and put me onto Selegiline, which I continued to take for the next 8 years. I did take myself off the Selegiline twice, because I was doing so well, but in each case, after 6 weeks, my symptoms returned to an unacceptable level and I went back onto the Selegiline again. The last time I took myself off in 2002 I stuck it out and after 6 months my symptoms were back to normal. I have not taken any Pd medication since then.

Don't do anything unless your symptoms, like mine, have got a lot better.

I have noticed that I have mood swings, but I put that down to Pd, not medication.

Do you do FAST WALKING or Power walking?

Good luck!

John

[zawy in reply to JohnPepper]

I am trying to do an hour of swimming and an hour of bicycle everyday, which works out to about an hour a day. It helped tremendously, much different from simply 30 minutes a day. I also try to do weight lifting, but confusion and distraction make this "chore" harder to get done.

[JohnPepper]

Hi Zawy. I don't understand the confusion and distraction? Do you get confused because of the weight-lifting or because other people interrupt you? Is that the same for distraction?

John

[zawy in reply to JohnPepper]

By confusion I guess I mean easily distracted. Not any real dementia type stuff.

[lempa_nik]

Hi Zawy, I went cold-turkey on Azilect (rasagiline) and Sinemet 17 days ago to pursue amino-acid therapy under the guidance of Alvin Stein, MD. With this therapy, it is mandatory to quit the Carbidopa, and hence the Sinemet. I continue , however, to take L-Dopa in the form of Mucuna Pruriens. In this time, there has been no change in my mood--I feel rather relaxed and mellow. Normally I can be quite an irritable person, but that tends to happen when I am under pressure from work. Right now I am nicer if only because it's my summer vacation, and the pressure is off. My wife was startled by the absence of my usual crabbiness. Heaven help me when work resumes!

[Hikoi in reply to lempa_nik]

How is it going now dumplekin?

[lempa_nik in reply to Hikoi]

Hi Hikoi, It is going well. In addition to several other supplements, I am taking 7.2 gm/day of Mucuna Pruriens extract, containing 40% L-Dopa or 2.88 gm/day. Symptomatic relief of hand tremor is comparable to that of the Sinemet plus Azilect. I had some nausea the first day, but that has never recurred.

I have the distinct impression that my face is more mobile. I can put on a smile with greater ease , not generating a facial tremor.

My mood is good and my body is comfortable. One symptom that has not been relieved by the old or new meds is mild "constipation," as I call it. Please excuse a graphic detail, but this takes the form of pellet-like stool. I am trying to manage this with magnesium and fiber. As usual, I try to avoid the harsh pharmaceuticals.

I have a short "off" period between doses when the tremor comes back. But the doctor has just started adjusting the Tyrosine dosage, which he believes will increase the "on" time. His approach is not random trial and error, but systematically guided by the results of urine samples, years of research into this protocol, and a vast database of patient records.

I have to take my meds 4 times a day, which is a little more involved than popping pills: i have to carefully weigh the Mucuna powder. The biggest downside to this protocol is that it's not cheap and apparently not covered in the USA by insurance. In my first 60 days of treatment, I have spent $1,400 per month, which goes for supplements, urine tests, phone consultations, etc.

For another testimonial regarding this amino-acid protocol, please see the words of Gerry W at neurotalk.psychcentral.com/... . As a pharmacist, he can purchase the supplements wholesale and save a lot of money. His medical provider, Dr. Daniel Kalish, is different from mine, but was trained by Marty Hinz M.D., the prime originator of this therapy, together with my doctor.

[Hikoi in reply to lempa_nik]

Is this something you have to stay on forever? Also Interesting the amount of L Dopa in the protocol.

Thanks for your comprehensive reply. Hope it continues to go well for you.

[lempa_nik in reply to Hikoi]

Yes, as far as I know, one stays on the protocol for life. It does not repair the damage to the neurons or halt the gradual progress of the disease. What it claims to do is to restore the proper amounts of neurotransmitters so that function is as near to normal as possible. The advantage over the usual meds is reportedly that a host of nasty, long term side effects--wearing off, dyskinesias, depression, etc., etc. -- can be avoided , or corrected, if they do arise. If this is so, and if you can afford it, the protocol is decidedly better than the alternatives of meds and/or DBS, which do not address the underlying "relative nutritional deficiencies" so basic to Parkinsons.

Granted , the amount of L-Dopa (about 3,000 mg per day) is much larger than we are used to with Sinemet. As I understand it, this is because of the absence in this protocol of a decarboxylase inhibitor (DCI) such as carbidopa. Without the DCI, most of the L-Dopa gets converted in the peripheral system to Dopamine, which cannot cross the blood-brain barrier. The large dose of L-Dopa compensates for this premature conversion, and allows some to get through. Similar, large doses of L-Dopa were standard up to 1975 when carbidopa started to be included in the medical arsenal against PD.

[lempa_nik in reply to Hikoi]

ADDENDUM: I have to qualify my previous answer to your questions. It appears that amino-acid therapy of Dr. Hinz et al can greatly slow or even halt the progress of the disease. Here is a concise summary of the protocol

alvinsteinmd.com/parkinsons...

Midway through this article, Dr. Stein advises as follows:

"THE CLOCK IS TICKING

This approach can lead to a “Petrified Patient” where the progression of the disease is halted and the need for amino acids remains constant over a long period of time. All other treatment protocols are associated with progression of the disease. Many want to try this approach once the disease gets worse; however, unlike conventional L-dopa use, this approach needs to be implemented as early as possible in the management of Parkinson’s disease to attempt to halt progression and keep baseline function as high as possible.

THE EFFECTS OF WAITING

The UPDRS (Unified Parkinson’s Diagnostic Rating Scale) rates the status of Parkinson’s disease symptoms on a scale from zero to 147 where zero is no symptoms. The ideal approach is to catch the disease as early as possible so that full function may be restored. Waiting too long can lead to a situation where even under the most ideal conditions the patient will not recover completely. Unfortunately, many of the patients entering this form of treatment with OCT2 guidance [i.e., urinary testing] have exhausted all other treatment options and are basically end stage Parkinson’s patients. While these patients benefit greatly, most do not achieve complete relief of symptoms. There is only a certain amount of function that can be recovered for those who wait too long to initiate properly balanced amino acids."

Dr. Stein's expression "Petrified Patient" is an unfortunate choice of words. But, as you can see from the rest of the passage, he is saying that the disease process can be brought to a standstill. What is more, he goes on to say that if the protocol is started early enough, "full function may be restored." That is very good news indeed . . . doubly so when the insurance companies get on board with coverage so that more of us can afford this treatment.

[Rscott in reply to lempa_nik]

 I am about to embark on the same amino acid program with Dr. Stewart in Dallas. How is this working for you at this point? 

[lempa_nik in reply to Rscott]

It's working well.  The protocol yields relief comparable to my experience with Sinemet and Azilect, and the on-period is similar.  But let me qualify that I am in the early, honeymoon phase of the disease where symptoms are relatively few and mild so it's hard to gauge the advantages over regular meds.  A test will be to see over several years how rapidly the disease progresses.  Unfortunately, even if the results are very positive, a sample size of 1 does not prove much of anything.

[Rscott in reply to lempa_nik]

I am also in the initial stages. Most people would not know that I had it. According to Dr. Stewart, after one year about 52% of patients can go off the treatment permanently with a 90% plus reduction in symptoms. Does your doctor say the same thing? Also, according to Dr. Stewart and Dr. Hinz the carbidopa aspect of Sinemet is what causes most of the major damage to the body and so this protocol avoids the negative side effects. I am about to start the detoxification program for two weeks before beginning the supplements. Thank you for your reply. I'm surprised there aren't more people who have tried or experienced this protocol.

[lempa_nik in reply to Rscott]

I assumed that the supplementation is almost always for life.  Nothing I have read has suggested that the deficient/dead neurons can rebound/resurrect.  I understand that neurogenesis has only been observed in a few small areas of the brain, such as the hippocampus. As for myself, I do not see any evidence after about 10 months that my symptoms are reducing.  I think Dr. Stewart is offering you a make-believe rosy picture. (But I'd be glad to be proven wrong.) Of course, he has a convenient escape clause if you don't see remission: "Oh, evidently, you're not in the lucky 52%.  Sorry!"   Even bright, talented doctors can be deluded, and when profits are in the picture, this can skew one's judgement even more. (if it's any consolation, all commercial "baldness cures" are also patently absurd because they are, in effect, promising to resurrect dead hair follicles--a feat that has never been scientifically validated.)

[Rscott in reply to lempa_nik]

Yes that does seem to be a pretty outrageous claim. Thank you for sharing your experience. God bless you.

[enjoysalud]

My son (52 years old) was put on Sinemet (25/100, 3X a day) January, 2015. With the help of his neurologist he weaned himself off. Last dosage was July 5, 2015. He walks 3 miles (thank you, John Pepper) each morning, stationary bike 2X a week for 50 minutes and 1 hour weekly of PD exercise class. He is also taking IMMUNOCAL, started June 18, 2015. He is still his sweet self....no irritability. He still has a stiff neck, cramped handwriting, double vision, and occasionally slurred speech and FATIGUE. He needs a couple of months more of taking Immunocal before optimum gain (it raises the glutathione).