1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Has anyone tried to get Ebselen (SPI-1005) online?

Discussion in 'Your Living Room' started by Mindosa, Oct 25, 2020.

  1. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    A lot of us heard about the Sound Pharmaceuticals SPI-1005 and some of us were participating in this trial and reporting that SPI-1005 works.

    In this trial Sound Pharmaceuticals are using anti-inflammatory and anti-neoplastic agent Ebselen, to be exact 400 mg daily doses of Ebselen.

    So, has anyone tried to get Ebselen online, especially those who were participating in SPI-1005 trial and knows it works for them?
     
  2. Donamo

    Donamo Active Member

    444
    90
    28
    May 12, 2014
    Hi Mindosa, I have been away from the forum for several years and now, unfortunately, I am back. So I was unaware of the SP-1005 trial but have now read up on it and many of your posts. I see that you take a similar approach to this as I do, essential the shotgun system. I was wondering how are you doing, are you getting things under control? Are you still taking NAC and prescription AVs?

    I have just started Valacyclovir. Several years ago, I took Famvir and credit it to "curing" my MD, which now seems to be not a cure but at least a remission, which has ended.
     
  3. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    I am doing much better than in the first 3 months of my disease. Now I hit 7 months of my MD disease mark. There are no instability attacks anymore, strong hearing fluctuations and strong hearing distortions, but what worries me the most now, there are no 100% symptoms free days anymore as was in the beginning and also I am experiencing new symptoms which are even difficult to describe.

    So feeling everyday these symptoms and the thought that it is gonna last the rest of my life is driving me crazy..life is not easy and living with this shit when I can't concentrate on my job and other important things is even more difficult..

    Besides, after 1.5 months I canceled taking Acyclovir. Don't feel any difference in my MD symptoms and I think I started to get side effects like skin rash and others.
    I am still taking NAC 3 gr daily for almost 2 months, but don't know whether it is affecting my MD.
     
  4. bob_

    bob_ New Member

    26
    9
    3
    Oct 21, 2018
    I thought about trying to get Ebselen on my own, but it was very expensive, as I recall. It might also just be a bad idea, but the expense immediately seemed prohibitive.
     
  5. Donamo

    Donamo Active Member

    444
    90
    28
    May 12, 2014
    I don't see how it could even be available as it is a proprietary drug - no generics.
     
  6. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    Decided to check what prices are now for the Ebselen (SPI-1005) and what treatment cost for MD we could expect if Sound Pharmaceuticals study for Meniere's disease will succeed.

    So I dug into Sound Pharmaceuticals Meniere's disease Phase 2 study:

    SPI-1005 for the Treatment of Patients With Meniere's Disease
    This study will evaluate the safety, efficacy, and Pharmacokinetics (PK) of two dose levels of SPI-1005 administered for 28 days compared to placebo in patients with Meniere's disease.

    Tree groups:
    1. Placebo
    2. 200mg of Ebselen (SPI-1005) twice daily;
    3. 400mg of Ebselen (SPI-1005) twice daily.
    Source:
    SPI-1005 for the Treatment of Patients With Meniere's Disease - Full Text View - ClinicalTrials.gov

    The lowest price for Ebselen (SPI-1005) I found was 5950 USD for 20 grams if we buy in bulk.
    Source:
    Ebselen | SPI-1005 | CAS#60940-34-3 | Organoselenium | Anti-Inflammatory | Cytoprotective Activity | MedKoo Biosciences

    So, for the (200mg of Ebselen twice daily) group, for 28 days you will need 11,2 grams of Ebselen and it will cost approximately 3332 USD.

    For another (400mg of Ebselen twice daily) group, for 28 days you will need 22,4 grams of Ebselen and it will cost approximately 6664 USD.

    According to this forum member Mac, Ebselen works only if you take it. When you stop taking it, after some time, MD symptoms are coming back.

    It’s no wonder we haven't heard of self-testing with Ebselen.

    So now I am thinking whether it will be a real treatment at all when the prices are so high (3000-6000 USD monthly) or maybe all of this will be covered by medical insurance?

    As I know now, the most expensive treatment for MD is Orthokine / Regenokine therapy. One procedure could cost you about 7000 - 10 000 USD and it's not covered by medical insurance. Besides, after half a year you need to repeat it for better effect and there is no guarantee you will get rid of MD symptoms once and for all. There are reports that despite such an expensive treatment, MD symptoms are returning after a year or two.
     
  7. IvanA

    IvanA Active Member

    338
    30
    28
    Apr 30, 2020
    Too expensive, I hope that if phase 3 ends with positive results for its commercialization the prices will go down when producing it in large quantities. And also that they soon incorporate it into the public health of my country.
     
  8. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    I don't believe there would be large quantities, we are only about 0,2% of the population. Also not all countries will include this medicine in their treatment plans, like happened with the Serc. Also due to the high price of the drug, medical insurance most likely won't cover the treatment plan how it is with the Orthokine / Regenokine therapy.
     
  9. IvanA

    IvanA Active Member

    338
    30
    28
    Apr 30, 2020
    I am confident that my country does cover it, public health systems do not work based on obtaining benefits. If not, we would not treat people with hepatitis C, which are very few cases a year and their medicine cost $ 30,000 per patient.

    In any case, this anti-inflammatory is being tested for many other diseases, if it gives positive results in more diseases the demand will be greater.
     
  10. California Sun

    California Sun Active Member

    369
    71
    28
    May 23, 2019
    That's a very depressing thought---that there could finally be something that could help me but I wouldn't be able to use it due to the cost. :(
     
    • Informative Informative x 1
  11. IvanA

    IvanA Active Member

    338
    30
    28
    Apr 30, 2020
    Mindosa is a pessimist, Meniere is not such a rare disease without clients, a lot of research is being done both in new drugs and in genetic research with European funds, in Australia and Japan there is also a lot of research.

    It is true that until now they have not found a cure, but many things have been investigated and tried: Betahistine, injections of various medicines, different types of surgeries, etc. These treatments are not the cure of course, but it took time and money to develop and study them as well. And today they are available to all of us, when they find something that really works it will also be available to us.

    Meniere is not a rare disease or at least not so rare, it is quite frequent and most ENT researchers focus their careers in one of these three fields:
    1-Cure tinnitus.
    2-Cure the Meniere.
    3-Cure deafness.

    Also, I don't know why Mindosa believes that the world ends in the USA, this disease at least in Iran, Russia, Canada, Europe, China, Japan, Oceania, etc.

    In any case, if what worries you is the lack of clients that allow a medicine for Meniere to be cheaper: 0.2% of the world population is 1,560,000,000, and 0.2% of the population of North America, Europe, Russia Japan, Oceania and China are 500,000,000. Do you think that will be enough?
     
  12. California Sun

    California Sun Active Member

    369
    71
    28
    May 23, 2019
    I understand the numbers. But my concern is that if it's so cost-prohibitive, the insurers or Medicare (for senior people) may opt to not cover it, at least not early on. I don't really know, though. I know you are not in the U.S., but what do you think?
     
  13. IvanA

    IvanA Active Member

    338
    30
    28
    Apr 30, 2020
    The more demand for a drug, the more it can lower its price since economies of scale allow lower production costs by manufacturing more quantities.

    Besides Epselen is one thing and SP-1005 is another, its price does not have to be similar. It's like calculating the price of a codeine drug based on how much morphine is worth.
     
  14. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    Ebselen (also called PZ 51, DR3305, and SPI-1005), is a synthetic organoselenium drug molecule.
    Source:
    Ebselen - Wikipedia
     
  15. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    While we are waiting for Ebselen to be approved for the Meniere's disease and hoping that treatment will be available for everyone in terms of price and will be effective, my proposal is to find alternatives with which we can mimic Ebselen’s properties.

    Ebselen (also called SPI-1005), is a synthetic organoselenium drug molecule with anti-inflammatory, anti-oxidant and cytoprotective activity.

    So for the anti-inflammatory I would suggest to try Serrapeptase or liquid curcumin.
    About Serrapeptase you can find more here:
    Serrapeptase
    TMJ

    About curcumin you can find more here:
    Pterostilbene and resveratrol. Has anyone tried them?
    Pterostilbene and resveratrol. Has anyone tried them?

    For the anti-oxidant I would suggest to try NAC. NAC, like Ebselen, mimics and induces glutathione peroxidase and both molecules work in similar ways.
    About NAC you can find more here:
    SPI-1005 Enters Phase 3 Trials, on fast track with FDA - Sept. 2019

    For the cytoprotective activity (is a process by which chemical compounds provide protection to cells against harmful agents) I would suggest to eat more broccoli (Sulforaphane), brussel sprouts and Thai ginger (pinostrobin).
    Sulforaphane found in broccoli is considered an indirect antioxidant, this compound is able to induce many cytoprotective proteins. Also it is possible to take broccoli extract as supplement which is rich in Sulforaphane.
    Source:
    Protective effect of sulforaphane against oxidative stress: recent advances - PubMed

    Also cytoprotection properties have resveratrol and the same curcumin and they can be taken as supplements.
    Source:
    Cytoprotective Effects of Natural Compounds against Oxidative Stress

    More about resveratrol benefits you can find here:
    Pterostilbene and resveratrol. Has anyone tried them?
     
    Last edited: Nov 18, 2020
  16. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    Well in China you can buy the same Ebselen (also called SPI-1005) for a much cheaper price. I checked several vendors and found quite good price

    1 kg of Ebselen - 5560 USD

    Ebselen suppliers & manufacturers in China

    So, for the 200mg of Ebselen twice daily and for 28 days you will need 11,2 grams of Ebselen and it will cost approximately 63 USD.

    For 400mg of Ebselen twice daily and for 28 days you will need 22,4 grams of Ebselen and it will cost approximately 125 USD.

    Monthly treatment cost with the Ebselen now is similar to AVs.

    There is still no FDA approval for treating MD with Ebselen nor with AVs, but a lot of us tried AVs and were having success, so why not to try Ebselen?
     
  17. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    Should I take NAC or Glutathione to increase my body's antioxidant levels?

    Well it could be neither one of these.

    Glutathione is a powerful antioxidant, but has poor absorption and by taking glutathione supplements you most likely won't increase your glutathione levels in your body.

    Another way to increase glutathione levels is by doing this indirectly by taking NAC supplements.

    [​IMG]

    NAC is a precursor to cysteine which is a vital precursor to glutathione, but your body so long as there's not a massive oxidant stress can produce all of the precursors that it needs.

    So is there something we can do to increase glutathione levels in our body?

    Well one study shows that we can do this by activating NRF2

    [​IMG]

    [​IMG]

    What's really interesting is telling our body to create more glutathione and we can do this by switching on in our NRF2 and the best molecule that we have to do this is sulforaphane.
    One study shows that we can increase glutathione levels 2.4 fold with sulforaphane molecule

    [​IMG]

    But unfortunately sulforaphane is highly unstable and if you take sulforaphane supplements it will degrade by the time you take it in.

    So to solve this problem the best way to eat broccoli sprouts. Broccoli sprouts have two molecules in it glucoraphanin and myrosinase and when these two are combined in our digestive tract it creates sulforaphane.

    glucoraphanin + myrosinase = sulforaphane

    If you don't like broccoli sprouts, you can take broccoli supplements which have glucoraphanin and myrosinase in it.

    So what do you think, are you going to take NAC supplements or broccoli sprouts instead?

     
  18. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    So there are lots of broccoli extract supplements to buy online. The majority of them are only offering sulforaphane in it.

    So according to the information above sulforaphane is unstable and it's better to choose those broccoli supplements which have glucoraphanin a.k.a. sulforaphane glucosinolate and preserved myrosinase enzyme in the broccoli that metabolizes sulforaphane glucosinolate (a.k.a. glucoraphanin) in the small intestine into sulforaphane.

    glucoraphanin (a.k.a. sulforaphane glucosinolate) + myrosinase = sulforaphane
     
  19. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    I noticed that the most convenient way to find those broccoli supplements in the online shops which have both (glucoraphanin + myrosinase) is to search only for myrosinase.
     
  20. Mindosa

    Mindosa Member

    340
    19
    18
    Jun 8, 2020
    Some broccoli extract supplement producers are even mentioning the importance of NRF2 protein activation.
     

Share This Page