Drugs Observations


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Drugs Observations

Postby HelloStarr » Sun Feb 12, 2017 10:15 pm

Hi,

I don't know if this helps anyone but I wanted to post about our observations:

-We tried Tasigna for a while but other than improving grip and maybe walking improvement, it didn't do much else and was prohibitively expensive. Not really much there.

-My Mom has had seizure issues since her fall, brain injury and subsequent brain surgery. I noticed that, before she had a seizure, she would be very talkative for a day or two before. Interestingly, her brain injury was on the left side, near the language center. I theorize that as brain activity starts gearing up, it stimulates that part of the brain.

-My Mom took antibiotics three times in the past year. Every time she did, I noticed an improvement in her. The last one she took was levofloxacin, which is in the quinolone class of antibiotics. Not sure if there is a correlation or causation.
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Re: Drugs Observations

Postby eplowman » Fri Feb 17, 2017 11:38 pm

HelloStarr,

It appears no one here (so far) has had any experience of PSP having been treated with Tasigna (aka Nilotinib) -- a drug approved for treatment of an unusual form of leukemia, and is under study for possible treatment of other cancers.

Which raises another question: Who signed the approval for your mother to be given this drug? Was a neurologist consulted for consent? With your mother years into PSP, she would have had to have someone with designated responsibility or power of attorney for her care approve use of the drug on her. Especially since the drug has never been approved for use to "treat" PSP. And especially since the drug can have serious side effects, including death, for some patients. And especially since a PSP patient is assumed not to be capable of thinking through complex issues and making rational judgment calls.

Also, I've seen no active clinical trials underway (in the NIH's current list) to investigate any tests or uses of the drug for anything other than for cancer forms and tumors.

This matter bears further investigation, IMO.

Ed P.

p.s. Your mother is an absolutely amazing woman. Against all odds, she is still among us. And some amazing doctors and surgeons are part of her courageous story.

For further reference:

https://www.cancer.gov/about-cancer/treatment/drugs/nilotinib
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Drugs Observations

Postby HelloStarr » Mon Mar 20, 2017 9:42 pm

Hi,

I'm responding because I am hoping this is the last post I'm going to make on this forum and am responding because you seemed to be unnecessarily concerned that I was doing something harmful. I feel like the Facebook PSP communities are a better fit for the support I need.

FYI, my Mom is still able to communicate and speak so she expressed her wishes to start the drug. She speaks and is able to move and walk around now. She is taking Tasigna with the consent and coordination of two different doctors, one of whom has worked with a lot of PSP patients in the NYC area. Her prescription is filled through Walgreen's pharmacy. I love my Mom beyond words and would not do anything to harm her. As one of the doctors said: if this was their Mom, they would be trying everything they could, including this medication. She takes a very low dose and it seems to be helping her. Drugs are used off-label all the time for different things and not all drugs are in active drug trials. While Tasigna seems to target alpha-synuclein, it also reduces serum levels of tau protein in CSF.

http://movementdisorders.ufhealth.org/2 ... d-answers/

https://www.parkinsons.org.uk/forum/thread/79114

https://academic.oup.com/hmg/article/22 ... eurons-and
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Re: Drugs Observations

Postby Robin » Mon Mar 20, 2017 10:11 pm

Certainly you should go to whatever place you find support!

I am confused. In your first post you say Nilotinib didn't help your mother and later you say she's taking it (again?).

Why don't you mention the name of the neurologist in the NYC area who sees a lot of people with PSP? That way if people in the area want to try it, they can see that MD.
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Re: Drugs Observations

Postby eplowman » Tue Mar 21, 2017 12:23 pm

HelloStarr,

I apologize for thinking "patient (your mom) safety first" in commenting initially on use of a drug not officially tested and authorized for treating progressive neuro-degenerative diseases. I should have investigated further before commenting. I had not known of Dr. Moussa's preliminary work and findings at Georgetown Lab -- not until after public notice circulated early this year that medical watchdogs had quietly approved safety testing of the "anti-leukemia" drug nilotinib (brand known as Tasigna® by Novartis) on neuro patients. I had not known of some of the amazing improvements seen in some Parkinsonian-type patients until VERY recently.

In light of the dramatic changes you've seen in your mother, I would think her amazing improvements would be one that curePSP's administrative staff would like to include in their "My Stories" feature. CurePSP publishes most of its reporting work in the main social media formats as well as in traditional online text formats (as per this forum). The curePSP headquarters is now located just across the river from you, in lower Manhattan.

I wish these drug-related developments had taken place much earlier -- back in 1999-2008 -- when my late wife Rose and I were desperately looking and praying for a cure or at least improvements in her struggles with PSP. I discovered curePSP and its forum in 2004, went on to read EVERY post since the forum's launch in 2003, became a forum member in 2005, received tremendously helpful knowledge and insight (as primary caregiver to Rose) from other forum members, later became volunteer moderator of the forum to this day, trying to "give back" some of what I owe to curePSP and forum fellow and sister caregivers of loved ones with PSP.

A lot of our caregivers of their loved ones are in their 60s and older (I'm 85! <grin>, so I hope you are able to keep us updated on your mom's improvements. They would be of keen interest to others who may want to sign up for forthcoming clinical trials.

Thank you for your patience with me during this journey.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Drugs Observations

Postby HelloStarr » Tue Mar 21, 2017 6:47 pm

Sorry-I wrote the last post in a hurry so it came across wrong-I was on an overnight train and my more lengthy original post kept not posting-long story.

I wanted to post my Mom's updates in the Facebook groups because they're more active. This forum is wonderful but it seems kinda quiet! I keep hoping more people would come to it.

I'll post a little about my Mom's trajectory:

She started Tasigna-we bought a limited supply because it is so expensive. She initially didn't show anything too noticeable. Then we stopped because she had a UTI. I finally gathered enough money for a second round-this time she took it once a day (150mg) for two months. We noticed an improvement: her grip strength increased, her voice seems stronger and she is able to walk more steps with aide.

Let me just mention, however, that, she developed a cough and then another uti during the second round of Tasigna and we decided not to stop it. Whenever she took antibiotics in combination with the Tasigna, we would notice a huge improvement. Something about the antibiotics: when she stopped the antibiotic course, the effect of improvement would be slower....
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Re: Drugs Observations

Postby Larryl1882 » Fri Mar 31, 2017 2:36 am

Is this the forum where I would post a medication I believe has helped my wife as far as speech?

Please understand that I am not that well educated, and do not understand some of the terms I see here. I can however give you all of the info and what it has done for my wife in easy to understand "laymans" terms.

Regards,
Larry
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Re: Drugs Observations

Postby Larryl1882 » Fri Mar 31, 2017 2:37 am

Is this the forum where I would post a medication I believe has helped my wife as far as speech?

Please understand that I am not that well educated, and do not understand some of the terms I see here. I can however give you all of the info and what it has done for my wife in easy to understand "laymans" terms.

Regards,
Larry
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Re: Drugs Observations

Postby Robin » Fri Mar 31, 2017 12:15 pm

Larry,
You might want to start a new topic for your info. Please share!
Robin
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Re: Drugs Observations

Postby zymurgy » Fri Mar 31, 2017 3:10 pm

Two comments 1) Does Tasigna cost $11-12,000 a month? Yikes. 2) My husband had a UTI. Given cipro. Took it for 2 weeks, seemed to get better. Then one week later it came back even worse. Off to urgent care and another round of cipro. Wasn't getting better, seemed to be going to kidneys, so went to urologist who discovered he did not have a E. coli UTI but a proteus, which is cipro resistant. New antibiotic and UTI cleared up in one week. Note to self -- next time have urine analysis done before getting antibiotic.
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Re: Drugs Observations

Postby Larryl1882 » Sat Apr 01, 2017 3:24 pm

Thanks Robin.

I think I pretty well covered it in, "Temporary speech recovery in PSP! Not VitalStim" and you answered me with some information, Thank You!

Again, I hope I didn't break any rules here.

Think I'll just research for a while.

Regards,
Larry
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