I've read a few studies and related posts indicating those with Parkinson's on prostate medication (Terazosin or Doxaxosin) have not had their Parkinson's get worse. Can anyone confirm? thanks in advance
Prostate medication halts Parkinson's? - Cure Parkinson's
Prostate medication halts Parkinson's?
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RooJr
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I've read the same stuff and switched to Terazosin a few weeks ago, so it's too early to know. However, I give it about a 0 chance it'll stop my progression. Maybe that's just me. I'll report back if it does.
I started two weeks ago on Terazosin for BPH but just 2 mg and the PD study used 5 mg so I am going to request 5 mg from the doctor as it did help for my bladder draining issue
Marc,
Do your UPDRS test scores indicate that your PD is progressing?
Art
I haven't paid attention to that score in a year or so, but the measurements my physical therapist at the VA takes re balance, gait, rigidity, etc. shows I am.
I know I am without those measurements.
I skipped my meeting this fall with my neurologist. I think he's good, but I've made too many trips to the VA this year and he really has nothing to offer me.
MBA:
Forgive my curiosity. I notice you somehow get many of the "experimental-repurposed" drugs which most people have trouble getting from their doctors, let alone anywhere else.
You were also in that bizarre clinical trial recently for constipation of all things.
What gives? You have to have an extremely sympathetic VA doctor(s).
PS: We have gone over this drug study at least 2-3 times before. Search function obviously doesn't work.
A typical study out of China via U of Iowa of all places. MICE, RATS, AND FLIES WERE TESTED. If you are a fly on the wall with mild BHP and PD, get this drug people!
Effective alone for controlling BHP along with D-004, but when both were combined... D-004 enhanced T's...effectiveness. Human data for this class of drugs (alpha blockers) on PD effectiveness doesn't exist.
The difficulty in evaluating the efficacy of a "single" re-purposed drug for PD is that almost all the individuals I work with in my PD Support Groups are on multiple drugs and rarely get objectively evaluated using the UPDRS scale (over time) by a qualified neuro. So whether a drug works or doesn't work becomes subjective. Subjective is fine if we are talking about n=1, but extrapolation to the general population is another issue.
Cheap drug.
Sharon
Good question. On the other hand, is it not possible to be of benefit?
"Lei Liu, PhD, at Capital Medical University in Beijing, China, found that terazosin could block cell death. Using toxin-induced and genetic PD models in mice, rats, flies, and induced pluripotent stem cells, the drug increased brain adenosine triphosphate levels and slowed or prevented neuron loss if it was given before the onset of cell death. In addition, the drug could slow or stop neurodegeneration, even if treatment was delayed until after neurodegeneration had started to develop. Liu's team discovered that the cell-protective activity was due to terazosin's ability to activate phosphoglycerate kinase 1 (PGK1), an enzyme critical for cellular energy production.
Researchers then probed databases looking at patients who took terazosin and found slower disease progression, decreased PD-related complications, and a reduced frequency of PD diagnoses.
This suggests that in patients taking terazosin and related drugs, enhanced PGK1 activity and increased glycolysis may slow neurodegeneration in PD.
"When we tested the drug in various different animal models of PD, they all got better. Both the molecular changes in the brain associated with cell death and the motor coordination in the animals improved," said Liu, a professor in the Beijing Institute for Brain Disorders, in a statement.
Nandakumar Narayanan, MD, PhD, a UI neurologist, and Jordan Schultz, PharmD, UI assistant professor of psychiatry, examined the Parkinson's Progression Markers Initiative database, which is sponsored by The Michael J. Fox Foundation for Parkinson's Research. The data showed that men with PD who were taking terazosin had reduced rates of progressive motor disability compared to men with PD who were taking a different drug, tamsulosin, for enlarged prostate."
Reference
: Cai R, Zhang Y, Simmering JE, et al. Enhancing glycolysis attenuates Parkinson’s disease progression in models and clinical databases [published online September 16, 2019]. J Clin Invest. doi: 10.1172/JCI129987."
From: ajmc.com/newsroom/common-pr...
By the way, have you ever followed "Retraction Watch"? Tons of stuff there, including the newsletters which are so up on everything I feel out of touch if I haven't looked at their last year's worth of revelations about current trends in journals slow-pacing their "notice of concerns" and retractions and the ongoing education about the inherent and accumulative flaws of the publishing industry and "publish or perish" risks, specific-nation risk distinctions, including bias risks inherent in traditional peer review, including an understanding of the potentially disastrous results. And check out their retractions database, especially the tendency of careful scientists toward sometimes too-politic understatement when challenging hidden but very bad science that should not be heeded, which often too little appercievded reticence to call a spade a spade can backfire into danger to the general public. Good stuff. Necessary stuff.
Thanks for the tip. I have never seen "retraction watch".
As to this study, I went over its short comings at length in another post. It is still a animal lab study by a group of cell biologists.
Sorry, but I have to disagree with you about one thing. Looking at databases to make a point doesn't convince me one way or the other. I am not a BIG fan of so-called database analysis. Most of these databases are second hand cobbled together information from a variety of different subsets.
I haven't looked closely at the MJFF's data in some time. I will reserve judgement on its value. What I remember from it is that it is a relatively small data set for each sub-category, many contain very small numbers. Less than 10 biomarkers per subcategory.
Sharon
True, correct, of course.
But not all science is large scale expensive randomized controlled human trials...and someone eventually must always be a guinea pig. On a medication well established for those with hypertension and in the medical community used also for hyperhidrosis, then watching out for side effects, it has been around long enough for new adverse events to be in the prescriber-reporting catalogue...thus relatively safe for the odd clinical playing around...which is how a lot of extension label trial indications get their start.
Without which, I might add, no one would ever have tried B1 even to this day, nor found penicillin nor the malleable usefulness of grapefruit juice and many other examples in the general informal class of "serendipitous" discoveries, the new kinase inhibitor class of targeted cancer treatments among them. Many examples abound in basic research and not just in human medical issues, but many aspects of applied social functions, foods, agriculture.
Got wrinkles? Botulinim toxin. Oh, whatever...but got crossed eyes (strabismus) or uncontrolled blinking (blepharospasm), or muscle stiffness, spasms or movement disorders such as cervical dystonia, or torticollis? Botulinim toxin too.
So room must be made for them, as affordable and available within some potential reasonable form of time frame, when the very expensive and many-years-consuming requirements of the large scale gold standard is ruled out for lack of a 10 billion market potential requiring similar scale resources and time to be business-appropriate for all the capital resources and time required when fiduciary responsibility must be a gatekeeper.
So if someone wants to try out a cheap look for their Northwest Passage, using something already somewhat safe and with some apparent possible promise from a few case reports, clean or otherwise, that's so bad to let them? Room can and should be made for individual case reports and adverse effects reports from individual off label clinical trials, and in a time frame that perhaps sees some benefit in someone's lifetime if not ours.
It's how I myself discovered Scotch whisky. Now, I'd never want to be without it, can't beat it with a stick!
Thanks Marion. Well said.
Well, your mitochondria don't like it, but your choice.
Sharon
Why do you say that, i.e., what will happen there?
Scotch does nothing for anyone's mitochondria but shut them down over time....exacerbating the existing PD symptoms. If you love your Johnny Walker Red, it won't matter how many drugs you or Marion take to prevent it happening.
As to your logic about positive comments expressed on this forum about this drug, it is somewhat flawed to think that way.
You and most others never get an annual UPDRS by a neuro and most PD is a "stair-step" process of diminishing capabilities...not a equally weighted longitudinal decline like you are implying. Therefore, in plain English, an individual can go for several years without a noticeable decline and attribute the lack of decline to his/her dog, Venus orbiting around Mars in the house of Capricorn, or who knows what, let alone a specific drug. It is specious to say the least.
I am not against trying a off-label drug without a scintilla of verifiable human evidence that is quantifiable; I am against faulty logic.
Sharon
Sharon,
Just for the record, I'm a nondrinker and until this fall when I skipped my scheduled visit, the VA did a UPDRS every 6 months. (They're so good.)
I agree, but 4 years without any progression is a really long time without attributing it to something exogenous.
Speaking of dogs, how come they don't get Parkinson's?
"I am not against trying a off-label drug without a scintilla of verifiable human evidence that is quantifiable; I am against faulty logic."
Well amen to that.
Hi Sharon,
In brief, it all comes down to what Marion says in her 1st sentence. (Thank you Marion for your thorough and detailed post.)
You provided reasons it likely won’t work, but more important, are there reasons not to try it?
VA doctors are not allowed to prescribe off label (because of that pesky evidence thing,) so my repurposing drugs for PD only works if I can demonstrate the health condition for which they’re indicated (and therein is where I find the necessary wiggle room.)
Healthcare at the Minneapolis VA is so good, it’s almost worth joining the Army for.
In 10 years, I’ve only joined 2 trials. The ENT-01 and the FUS pallidotomy and had I not gotten a sham procedure, both would’ve worked fine.
Whatever I’m taking defines my baseline so if I add something and it stops or slows my progression, I get to attribute that to the new addition.
Probably its semantics, but I don’t consider my own evaluation of my symptoms subjective. On those days that my symptoms are better or worse, it’s perfectly clear.
As you note, subjective is fine for n = 1, '...but one cannot extrapolate from that to the general population.' I'm an anti-extrapolationist. I don’t ever recommend or even comment on whether others should take or not take a pharmaceutical.
As I’ve said many times, there is not legitimate, hard, scientific evidence for anything I do and the odds aren’t good there will be before I reach the tipping point, so I need some other basis for making decisions to act or not act and not acting is a poor choice.
I cannot think of another time it has happened that 2 people appear and say xyz drug has STOPPED their progression. That’s huge.
I haven’t made a decision yet, but if I find the stuff to be safe, I’ll try it -- because, again, there will be no reason not to.
Marc
My hubby with PD been on doxazosin for 4 years cant say PD hasn't got worse...
Kimbo1962,
Do you know the dose he is taking?
Art
So, here we have 2 people who say doxazosin has stopped their progression.
Seems pretty significant to me.
I wonder if we shouldn't invite everybody who feels like they're not progressing to identify themselves and tell us what they're taking.
Maybe we'd find some correlations?
Now, I gotta figure out if I should switch from terazosin.
Yes, I would love it if more members would be more forthcoming on what they feel is helpful and what is not helpful. This forum has over 16,000 members now. I think the membership had just reached 11,000 members shortly after I joined, so there are a lot of people reading, but actual members sharing their knowledge is a much smaller number. With the total number of members who have not shared their practical experiences regarding PD, the forum knowledge base could grow very significantly if they did! Practical experience can be very useful, but only if it is actually disseminated on the forum.
Another issue is that it seems that once members reach a state of very significantly improved PD symptoms, they seem to post less and less and eventually not at all. These are people who have found what is successful for them and their information could be some of the most useful for other members, but it is sometimes not shared.
Sharing is caring!!! 😉😉😉
Art
Amen. The very purpose of this forum is for those who found stuff that's working to share with the rest of us. Please.
I have been taking doxazosin (10mg extended release) for many years. My PD has not progressed.
RooJr in reply to
May I ask if you had PD prior to starting doxazosin? Thanks
in reply to RooJr
I was on Doxazosin prior to my PD diagnosis.
Gioc in reply to
Thanks for sharing, I always wondered how you didn't get any worse.
Dear Gio, is it necessary for someone to get worse? 
Absolutely not. I apologize if I expressed myself badly. I have never dared to ask Osidge to be the cause of his very good condition after years and if he believes it is due to the use of this drug in the light of this discovery, if I may politely ask.
My husband is on Oxybutynin, Myrebetriq, tamsulosin and Finesteride for bladder issues and prostate. BUT you are only talking about those other two meds. Three of the 4 that he's taking are generic but not sure what the main med is.
would this only be for male PD patients?
No, it is used to reduce blood pressure, mainly, in treatments where ACE inhibitors and now more mainstream anti-hypertensives would be complicating, and to relieve chronic over-sweating in hands and occasionally for other excess sweating, as it is a sodium channel and anti-cholinergic. Thus it is appropriate for both genders. Main side effects are possible postural hypotension.
The side effects of Terazosin sound a little crazy for men. On the one hand it can cause impotence, on the other hand, it can cause priapism or an erection that won't quit and requires immediate medical attention. Hypotension is another common issue. Here is a link to a more complete list of side effects :
healthline.com/health/teraz...
Art
in reply to chartist
Indeed a crazy list but, as my own experience shows, not everyone gets side effects.
My husband got a prescription from his urologist for Hytrin (brand name of terazosin). All pharmacies we checked with don't have it. They told us manufacturer does not make it any longer, but we could get the generic form. Even the generic form is hard to find as they said it is an old medication. Funny, Sinemet is 50 years old but it is still around! In any event, Urologist was not aware of the clinical trials, told us it's an old med, but he prescribed it. I believed that he would be more interested in this med as his wife has PD, but he wasn't encouraging or interested in discussing it.
Question: I found a Canadian on line pharmacy where I could order Hytrin (terazosin). Are these on line pharmacies reliable and safe? I have never ordered any meds on line.
THANK YOU!
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