Encouraging Press Release Regarding Nilotinib

[jimcaster]

Treatment with a single dose of the leukemia therapy Tasigna (nilotinib) improves the brain’s ability to use dopamine in people with Parkinson’s by reducing inflammation and levels of toxic alpha-synuclein, according to Phase 2 trial results.

eurekalert.org/pub_releases...

[Icequeen10]

Can I just get 150 mg and inject or infuse? Did they say how dose is given,?

[MBAnderson in reply to Icequeen10]

1st, the article is misleading by stating a single dose will create a meaningful or discernible benefit. That won't happen from one dose.

2nd, it is not likely that you can find a doctor to prescribe it because this drug is not casually prescribed off label and if you're going to try to procure some, you should 1st read everything you can get your hands. Nilotinib is (potentially) a dangerous drug. There are several different ways you can kill yourself with this drug. There are a number of posts on this forum about it which I hope you would read 1st.

[Isthistheone]

Jim, it seems I may be very lucky and indeed touched by an Angel. The entire Parkinson's community was on high alert when Georgetown University announced the results of it's first very limited trial involving nilotinib, generic name for Tasigna manufactured by Novartis. I did my own due diligence, and was determined to get on Tasigna therapy for my Parkinson's disease. I was diagnosed Aug 30, 2010. I could not find a doctor in the Albany NY area to prescribe it for me.

I contacted a person on the internet and left my name and telephone number. Didn't hear anything for 4-5 months, and completely forgot about it until the phone rang. He apologized for not contacting me sooner. His father in law knew a doctor who would prescribe Tasigna for me and a neurologist who would "follow me." I began to set things up - cardio for baseline and follow up KEGs, and my family medicine doctor for periodic blood tests. The out of state neurologist was already following three people. He didn't want a fourth. That news was devastating. I found out the wife of the man who set things up for me, was suffering from LB dementia. She was taking Tasigna for 90 +/- days. Her husband Don reported several encouraging signs. Unfortunately this lovely lady died. She was one of the three being followed by the neurologist. I will never forget and will always be indebted to Don and his wife. Truly I have been touched by two angels.

June 1, 2017 I started taking Tasigna, 200 mg capsule once per day. I journaled daily my progress. I was convinced Tasigna was responsible for my many improvements - balance, no more constipation, brain fog eliminated, up and down stairs one at a time no more baby steps, significant carb levo pill count reduction 20-22 per day down to 12, some days 10 even 8. Oh let me mention almost complete recovery of my sense of smell - something I haven't had for over 20 years!!

In April 2018 my out of state neuro determined I wasn't making any more progress and stopped following me. I noticed a steep decline in motor function Jun - Oct 2018. I could not determine why. Then it hit me No Tasigna in 4 months. Back on Tasigna now since November. I'm hoping to regain gait and balance.

PWP stay in the game. Keep moving. Thank you to all those dedicated researchers. I'm confident you will crack the code.

[MBAnderson in reply to Isthistheone]

Thanks for the update. Nice talking to you the other day. I'm sure you'll realize the same benefits you did the 1st time around. Let us know how long that takes. Be well, stay in touch.

Marc

[jimcaster in reply to Isthistheone]

I really admire your determination and great attitude. Hopefully, Nilotinib is "the one" or, better yet, one of many ways to slow or stop progression of Parkinson's disease.

[munchybunch in reply to Isthistheone]

Can you ask drs to prescribe this or is it very difficult??

[Juliegrace in reply to munchybunch]

I don't think too many doctors will prescribe it "off label" and it is very expensive. But you could certainly ask.

[Isthistheone in reply to munchybunch]

My insurance covers the cost - $5000 per month. Finding a doctor to prescribe it off label is very difficult. This is a cancer treatment drug. You need baseline and monthly EKG testing and monthly blood testing. I tolerated the 200mg capsule dose very well. I reached the point where I decided the risk to me was worth it. Unfortunately my family doctor informed me today he would not prescribe this for me. Liability is the issue. Too many positives for me taking Tasigna to quit now.

[munchybunch in reply to Isthistheone]

Did you notice great improvements?

[ConnieD in reply to Isthistheone]

How will you now find someone new to prescribe it?

[Isthistheone in reply to Isthistheone]

CORRECTION. My insurance company will no longer cover Tasigna. They requested my prescribing doctor to fill out a 2 page questionnaire. My impression Tasigna definitely works. I'm sure there will be more positive results. Stay tuned in, my insurance carrier hasn't heard the end of this!

[rngrav]

Is there any way to get a prescription for one dose or to buy without a prescription?

[jimcaster in reply to rngrav]

Not that I am aware of.

[MBAnderson in reply to rngrav]

No, plus 1 dose is of no value.

[rngrav in reply to MBAnderson]

Thank you. I realize now what a stupid question that was. Plus melatonin is maybe safer and more important on a long term basis.

[jimcaster in reply to rngrav]

The only stupid question is that which goes unasked. 😊

[MBAnderson in reply to jimcaster]

So true

[Isthistheone in reply to rngrav]

I'm not a doctor, but my personal opinion, one dose is not going to do anything. When you consider you probably have had misfolded proteins aggregating for 15, 20 or more years, one 200 mg capsule is not going to do much.

According to my insurance company, Medicare required preauthorization, and Medicare disapproved it. What happened to the federal "Right to Try Act"? My insurance paid for my original prescription 22 mo ago when nobody was taking Tasigna off label for Parkinson's? JMO, many more people are taking it now, and the insurance companies are balking at the price, $5500 per month. Novartis holds the patent which I believe is good for 8-10 more years!

Stay tuned I'm not giving up. A major battle is brewing.

[rngrav in reply to Isthistheone]

I had not heard of that act so this is very interesting to me. With PD there are no curative drugs approved yet and others only treat the symptoms and only for a while. So how does this reality fit in with "no other treatments available"? That $5500 price is prohibitive for most on a long term basis. I wonder how melatonin and antioxidants plus the autophagy of fasting would work. Also, sleep hygiene to assist the glymphatic system in clearing out brain "gunk"? I know, I am thinking way out of the box. And then there is sunlight exposure with all of the benefits of that--serotonin, melatonin, vitamin D and "brain derived neurotrophic factor".), to name a few.

[Isthistheone in reply to rngrav]

Goggle "federal right to try act". It doesn't appear this is a very strong law but it's a start. If you have a terminal condition your doctor can write a prescription for any drug if he feels it could benefit you. The drug must have cleared FDA Phase 1 status. No mention is made of who pays for the drug among other things. I strongly believe we are very close to finding a drug that will slow PD progression perhaps even stop it. Maybe there's something out there that can reverse and restore lost function.

Stay active and keep morning. Take care, so many very smart and dedicated people to think otherwise!!!

[rngrav in reply to Isthistheone]

I did that and found it very interesting. PD is not terminal though. I agree about being on the verge of curative meds from all that I am reading. Morning routines are important and I am adding sun exposure to mine.

[Isthistheone in reply to rngrav]

Terminal may not be the right word, there are other conditions that may allow PWP access to experimental therapies.

[rngrav in reply to Isthistheone]

PWP? What does that acronym mean?

[jimcaster in reply to rngrav]

People With Parkinson's.

[rngrav in reply to jimcaster]

Thank you Jim. I am new to the PD community and have some learning to do.

[jimcaster in reply to rngrav]

We all do. All I know for sure is that joining this forum is the best thing I have done regarding PD. There are many caring people sharing lots of very helpful information on here.

[Softballman in reply to Isthistheone]

I’m curious when you started re take Tasigna recently have benefits returned?

[Isthistheone in reply to Softballman]

My sense of smell returned in about three weeks. Constipation no longer a problem. Pill count in February was 18.8, March was 13.3 down from 21-22 prior. Carb/levo 25/100. I have not been successful in locating a doctor to write another prescription. I've been totally off Tasigna since April, and experienced significant decline. Gait and balance is poor. I use a walker whenever I leave the house. Lots of positive press on Tasigna for Parkinson's, but the insurance companies are not hearing any of it.

Not giving up.

My son and I just completed our baseball stadium tour. Eighteen years and 46,000 miles later we've been to every MLB ballpark, 30 total. Later today is my grandson's Kindergarten graduation. Next week my Boston granddaughters will be visiting for a week. Really looking forward to this.

Stay in the game PWP. Our day is coming soon. Keep the faith and keep moving.

[Rlp1 in reply to Isthistheone]

I think it is one dose per day.

[rngrav]

I see that. I have yet to be diagnosed and doctors don't like nurses who diagnose themselves. With RBD and other symptoms it would be a miracle if I don't have PD. People with RBD are at high risk and it might even be called "pathognomic". If I had known about the connection 10 years ago when I had my first episode of RBD I could have been doing more to prevent progression.

[rngrav]

RBD in my case means I have a terrifying nightmare and start crying out or moaning loudly. In my dream I am actually screaming.

[Rlp1]

Here is a link on the major Nilotinib study: nilopd.org/health-care-prov.... It looks like there will be some findings in mid-2020