Relax

Do we really want to cure illnesses in this country? Please allow me to sound a really cynical note on this fine summer day. It occurred to me the other day that big organizations and businesses have more to lose than gain if diseases are cured and the suffering stops.

Affinity groups, single illness advocates, are large parts of our culture. A cure is a ticket to the unemployment line for many thousands of employees. Big Pharma would put the secret of any cure in a safe, secret location, hidden away from society. They cannot be in favor of cures. Drug companies could lose billions.

We depend on sickness to keep our economy humming. We are deeply invested in suffering. But fear not. We are too committed to continuing our war in Afghanistan to come up with the funds to cure anything. And don’t forget the wall. Got to have that wall. Don’t bother me about cures. Luckily, there don’t appear to be too many on the horizon.

42 Responses to Relax

  1. Christopher August 27, 2017 at 6:28 pm #

    There is a subset of biotech which isn’t beholden to that train of thought and that is informatics, which encompasses a huge diversity of fields (i.e. proteomics, epigenetics, cellular microenvironments, sequencing and array technology, etc). It would be impossible for big pharma to ignore breakthroughs from say… 3D adaptive cellular matrix research. Especially when many upstart biotechs (run by millennials) are way more interested in completely changing the world. Can’t hide the information of information. Right now we use IBM’s Watson to comb through thousands of research papers a day, using AI, to help cure cancer faster. And it’s working already. Plus it would be utterly impossible to squelch activist bioengineers– the biopunks–from looking to reach the pantheon of scientific giants and pioneers through social media blitzes capitalizing on OTT content and SEO through personal websites.

    The future is massively changing whether we want it to or not… legacy jobs (their term not mine) be damned. The path ahead is more like dodge-ball… disruptive tech. Just look at Elon Musk as an example. If he does well it is a good portent of other fields as well. It just won’t be super fast.

  2. Amy Hunt August 28, 2017 at 2:56 pm #

    Agree with Christopher above, there are small disrupters at work, but you’re right on the money. Where would the staff of the NMSS be without MS? Where would big pharma be? They want little treatments that move the needle here and there, preferably ones you must take forever, and preferably for RRMS, giving them younger consumers with higher lifetime value. This is a business. And no one big will play big ball with stem cells no matter how promising: how do you charge me for my own stem cells? Not a good business.

  3. Christopher August 28, 2017 at 3:23 pm #

    We’re nowhere close to using stem cells in any appreciable trial. But you wouldn’t pay for your own cells. What you would pay for is the proprietary process… the therapy. The most cutting edge SCT would cost hundreds of thousands if not millions right now, so you can see the places offering therapies for $30 – $40 thousand is a complete joke. That amount might only cover your hospital stay.

  4. Louisa August 28, 2017 at 9:02 pm #

    Christopher you are so knowlegdable, and I always appreciate your posts, but I am with Amy on this one. The incentives for the drug companies to create life long expensive therapies are just too great. If you get a chance, google and take a look at the NYTIMES story on the FDA approval for Lemtrada. It made me cry, both sad and frustration tears. I really believe it should be offered as a first line as it is in GB and Canada where the profit incentives are different. And as I said before, I wish you the best of luck with it!

  5. Christopher August 28, 2017 at 10:12 pm #

    I was just replying to part of a post.

    Does big pharma draw out only small increases in drug effectiveness? Yes, they do… in everything. Just look at drugs like Keytruda and Opdivo–both for cancer, and only tiny increases in life extension over the previous “blockbuster” drugs. There are also companies that create drugs with more humanitarian motivations than just pure profit. A pediatric oncologist I met at the professor’s lab I volunteered in at UCI told me something interesting (this was about 12 years ago). The oncologist’s name is Dr. Philip Schwartz, and he works at CHOC in Orange, CA. We were talking about researchers and I asked him if he was upset at scientists who just did research for money and notoriety. He said, “Well, l probably wouldn’t be having them over for dinner, but in this search for answers and cures we need both. If we can get to that point it doesn’t really matter what someone’s motivation is. We need people who have a genuine interest in helping end human suffering, and the hotshots who might be arrogant jerks.” It makes a lot of sense.

    Now the rest of us need to get more people involved, to be able to raise and direct more funds to critical areas. I have some ideas, but I think there’s more than a few people out there with better ideas. We just need to connect with them, grab their attention, and give them a platform to let their ideas gain traction and be realized. Things like a non-profit agency that is just a big account that gains interest and funds research unrelated to corporate interests… much like tbe NIH, but people can donate with dollar-for-dollar tax incentives. We will always need drug companies, but their exponential profit growth will start to wane at some point. It’s inevitable. What happens with true breakthroughs and leaps forward in science will be up to the rest of us to identify and support. But that’s just my goofy imagination talking.

  6. CP August 29, 2017 at 5:48 pm #

    My dad remembers in the 50’s hearing there would be a cure for diabetes “within 10 years”. Fast forward 60+ years and Lily (makers of insulin) is one of the largest employers in Indianapolis. Curing diabetes would cripple many a family in this area. Stockholders would never agree to advancing a cure. Richard, haven’t you heard? Mexico is paying for the Wall.

  7. Jan August 29, 2017 at 7:27 pm #

    With more than some angst I put in an order for a trial of Ampyra. I thought I recalled reading somewhere that it really messed somebody up, but someone I know has been on it and has really been helped. Hoping it won’t net medicine-sensitive me with a UTI or something-If anyone has firsthand experience comments, feel free.

    • Jeanette August 31, 2017 at 11:51 pm #

      Jan, I’ve taken Ampyra for many years with no side effects at all. Over my 20+ years with MS, I’ve tried a lot of stuff. Some, like the interferons, and I definitely do not get along. High doses of steroids – very bad for me. The thing about Ampyra when people ask me if it’s working or helping is there’s really no way to know unless I stop taking it and compare. In that I do tolerate it well and I’m still on 2 feet (cane assisted, more and more substantially), I’m not willing to test it that way. MS being what it is (meaning pretty unpredictable and different for everyone), I know that mine has continued to progress gradually, but continuously for many of these last years. I know that no matter what, heat for me is a killer. I know other things that definitely do not help me because of bad reactions. I know more about what is not than what is. So, not sure if it’s actually helping. I do know it’s not hurting.

  8. Christopher August 29, 2017 at 11:00 pm #

    I have taken Ampyra (fampridine SR), and it was about 9 years ago. I don’t take it anymore because it didn’t do much for me. There isn’t much to worry about with the drug–just don’t take more than prescribed and stay hydrated, which you should be doing with MS anyway. The most important thing to remember is not to take more than prescribed, and directed in the enclosed literature… and I’ll explain why. The drug increases the chemical part of nerve signals (in nerve signals there’s two parts: a shorter and faster electrical part, and a longer and slower chemical part) so that it can make up for signal lost from damage. Think more of a hose with holes in it instead of a frayed wire–which is also applicable but oversimplified. With that increased signal it will seem like some ability has come back, but not exanctly. It’s not the best example, but it’s kind of like drinking caffeinated drinks to get a lift. It will work for a little while, but you will be tired again when it wears off. Also drinking more can make you sick, and you’ll feel worse when you come down. With fampridine, it increases nerve signals temporarily so you can hopefully do more. It doesn’t work for everyone–depends on how much the nerves are damaged. The biggest problem comes when patients say, “hey… if 10mg works like this then 20mg or 30 mg will work 2 or 3 times better!” Uh, not so. It does increase the signal more, but the chemical reactions are too much for the cells to handle and the signals become wildly chaotic, which will cause seizures. Just take as directed and you’ll be fine.

    In many things more can be better, but in this case… absolutely not.

  9. Christopher August 29, 2017 at 11:08 pm #

    Also, you may have a low tolerance to drugs, but they shouldn’t be causing UTIs. UTIs are mostly caused by bacteria.

  10. Sue in tx August 29, 2017 at 11:19 pm #

    yes, i have unexpectedly cried frustrated tears upon reading about how money trumps saftey and health. the fda sends warning letters to manufactutrers of generic drugs made in India for US consumption that dont meet standards but redacts the name of the drugs in publically available documents. The FDA is protecting the drug companies because it wants to have a cheap supplier of generics. By protecting the companies, we consumers have no choice to use so called bio equiv drugs which have been found to be of substandard quality. yet, no one seems to care.

  11. Christopher August 30, 2017 at 12:43 am #

    We have to change that, and it’s not gonna be easy.

  12. Jane August 30, 2017 at 8:59 am #

    Hi Jan. I take Ampyra, and it helps me. Ditto to everything Christopher said.

  13. Rita August 30, 2017 at 11:40 am #

    No drug dealer tries to cure a customer. That is the same whether it’s heroin or insulin. The money is never in the cure, it’s in the comeback. It’s true that many drug companies employ many people. So are we as a society to accept the idea that although millions of people could be cured of a disease not only now but potentially wipe it out for the future, it is not worth the unemployment toll at big pharm companies? Unfortunately It really is a dilemma that capitalism creates. I realize the economic impact to the country because of the domino effect of unemployment in any sector so the answers are much more complex. No money in cures 🙁

  14. nancy August 30, 2017 at 1:04 pm #

    Jan, yes, everyone is different. I tried Amprya but it wasn’t for me. It made me so dizzy that I couldn’t get up from the couch…no walking help for me. I gave up on it after several days. Should I have tried longer? Who knows?

  15. Brian L. August 30, 2017 at 3:35 pm #

    Jan,
    I too have been on Ampyra for years with no problems at all. It helps, but don’t go sign up for a soccer league. In my case, it only mildly helps with my mobility issues, which are many. I can’t walk anymore, but I can still transfer myself in and out of my wheelchair. My transfers are noticeably smoother with Ampyra. The directions stress to take the doses twelve hours apart and I’m going to strongly recommend you do that. For whatever reason, it seems to have the most beneficial effect that way. I had a hard time staying on schedule for a while, but then I finally set up reminders on my smartphone. I have definitely had the best results when I stay on a strict schedule. Good luck!

  16. Jan August 30, 2017 at 10:22 pm #

    Hi Christopher, Jane, Nancy, and Brian,

    Well, shucks–so no double loops at the ice rink, huh? (I may sell my skates, sadly). And actually, a decent walk to the mail box would do.

    Seriously, thank you all for all of your thoughtful and very helpful information.
    * Good to know about the UTIs–had not previously known that, thanks;.
    * Will definitely follow directions (12 hours apart, 2x/day, and no more);
    * Very early on, Gabapentin made me dizzy, and I gave up on that, opting
    * instead for a clear head with pain. Yikes, Nancy, sorry to read that–
    Same here: would it have worked had I tried >4 days? Who knows.
    Same with Gralise. I hate meds. (Pass the dark chocolate, please).
    * I’ve heard that Ampyra only works for about 1/3 of people: will see.
    And will mention a result in time. I’m only doing this try because things
    have gotten far worse physically. Sigh.

    This really is a horrid disease. Then again, I think of all of the displaced people around Houston. Wow.

  17. Christopher August 31, 2017 at 3:25 am #

    Jan,

    Couple of things: First, you may be experiencing a lot of pseudo-exacerbations (sorry so many terms). It took me years to learn the difference between things, and a PE just means temporary worsening of symptoms brought on by triggers (i.e. heat, dehydration, stress, exhaustion, pain, etc). So once the trigger/stimulus is taken away you’ll feel better. To get a baseline of how you are actually doing as accumulation of disability, be sure it’s a time that is optimal with few or none of those triggers, and you should have a fairly accurate picture of where you stand with actual progression–all of us can use the same metric.

    Secondly, there’s still time for making changes that will improve your daily life. Do a lot of research, and use all the MS resources available from organizations and the internet. Even though you may not be a Tysabri candidate there’s still other DMDs available to you. And for everyone the things to watch out for in the near future are high dose biotin, and anti-LINGO-1. The former should help without many side effects because it’s a water soluble B vitamin, and the latter promotes myelin regeneration. Going forward may be a pretty bumpy ride, but fear not because the future’s looking brighter. I’m not blowing smoke… that would be cruel.

    Gabapentin is a horrible drug that should be removed from the market.

  18. grandma August 31, 2017 at 10:49 am #

    Christopher, Why is Gabapentin horrible ? My granddaughter takes it 3x a day! Now I’m worried!

  19. Christopher August 31, 2017 at 12:22 pm #

    Gabapentin is a drug that was created as an anticonvulsant–for seizures. It gained popularity for off label use for pain and neuropathy, but no long term studies have been done with its off label use. The drug isn’t metabolized by the liver, which means that the whole drug circulates until excreted without being broken down and the drug can accumulate in the blood. So it’s very important to go by the prescribed dosage and not take more going by how you’re feeling. The other part that is concerning is the amount of time it takes to stop the dug if you need to. A person has to taper down from gabapentin very slowly because rapid discontinuation causes extremely uncomfortable withdrawal symptoms, which can also include seizures. It is a very strong drug, and should be treated carefully. It does seem to work for people with pain and neuropathy, but the feel-good feeling of relaxation, like a kind of high, is misleading. Also many people have to increase the dosage after a while. I was on gabapentin for about six months 8 years ago, and it took me over a month to get off it when it didn’t work anymore. My intention is not to scare anyone. And if it’s working for someone, then all the better. So please talk to a doctor first before making any decisions. I am writing mostly from personal experience.

  20. grandma August 31, 2017 at 4:13 pm #

    Christopher, Thank you so much for explaining in such a way that even I can understand!

  21. Christopher August 31, 2017 at 5:23 pm #

    You’re welcome. I wish you and your granddaughter well. Hopefully someday soon none of us will have to take a fistful of drugs each day.

  22. Jan August 31, 2017 at 8:58 pm #

    Christopher thanks much for all of your information; very appreciated. I need to take some deep breaths–went swimming laps today trying out facilities…the pool was fine, but everything else was not and The community center place it typically go to in cold weather has a very long walk to get in there that is very difficult.

    Needless to say, when making a simple dinner tonight with the splint on my wrist I dropped a lid to a dish coming out of the microwave that shattered into about a million pieces–my son helped clean it up but it wasn’t exactly what I needed, nor what my marital relationship needed it today.

    What you said about stress reminds me that my life has high stress most of the time. which I’m sure makes everything worse. when I find the work that I am able to do relaxing, I suppose that says something!!

  23. Jan August 31, 2017 at 8:59 pm #

    And it also says something when I’m talking into my phone because things just don’t come out right!

  24. Sue in TX August 31, 2017 at 10:10 pm #

    I think the tendency of ill people to turn to Dr Google for information about their health is a reflection of the fact that western medicine does not do a good job treating us, medicating us, or educating us about how to truly live a healthly life. I’m not even sure western mecicine can identify how to live well.
    The reason meds can cause UTIs is because it can alter the pH level of urine, which allows bacteria to grow. Of course Drug Trials generally involve males, but females are more prone to UTIs because of their anatomy. I assume this leads to more post-marketing “discoveries” that a drug causes UTIs. The good news is that One can alter their diet to get a healthier urine pH. Seek out doctor google’s consult for suggestions and run it by your real doctor. Until money and limited drug trials stop shaping our treatments, we need to zealously self-advocate and openly share info with each other.

    • Jan September 2, 2017 at 7:04 am #

      Interesting, thanks.

  25. Christopher September 1, 2017 at 11:52 am #

    Crowd-sourced analytics and search for cures…

    Hey, why not? It works for most other stuff.

  26. Sandy Stolaronek September 4, 2017 at 1:28 pm #

    Hey all; it’s been a while since I’ve chimed in. I hope everyone is doing as well as can be expected! I’m trying to roll with the punches and take my licks from MS. I feel that I shouldn’t even be on a DMT, because I am steadily progressing. I don’t have any energy or even motivation anymore, which is both very frustrating and disturbing. I feel like it’s actually making me feel worse now. When I first started it, I felt renewed and I had a new energy and outlook on my life. But, somewhere along the way, things have changed. Now… I believe that this is my new normal. I don’t see the sense in getting it anymore and my MRI’s haven’t changed since I was diagnosed 7 years ago. I wish that I could at least feel more awake during the day. It feels like my days and nights are reversed and there’s no going back. I sit and lay down most of the day…. feels like I’m just existing. If I could take something that would at least give me a little more energy and motivation, I would be happy with that, because I know that the damage that I have accumulated is not reversible. I really wanted to start the new drug Ocrevus, but my doctor is not on board with my taking it yet, for some reason. So much for the my hopes and dreams for this drug, because they’ve been dashed and crushed! I know that I should be grateful for what I have and can do; especially in the wake of Hurricane Harvey. I sure wouldn’t want to be in the position that those poor people are in and having to live through right now. I know what it’s like to go through a hurricane with flooding; because I lived in and around Houston for seven years. I lived through Hurricane Aleshia in 1983; which was more wind and tornadoes, than flooding and rain. I also suffered through other tropical storms while living there. This was one of the reasons why my ex-husband and I had moved out of Texas; along with the heat, traffic, bugs and crime. I certainly don’t miss it. Over the years, I have watched the news coming from the areas that I once lived in, and I know that we made the right decision to move out of the Lone Star state. I just wish there was more I could do for them, than sending a little money. I guess my prayers will just have to do.

  27. Ann September 4, 2017 at 4:57 pm #

    Sandy,
    Your prayers will be a joy full addition to all the aid going to Houston. It will empower those who can to do and will assist in ways only you and I can imagine.
    On the “tired” front, have you ever tried Provigil, Modafinal or other fog clearing meds? I would find myself sleeping all the time without Modafinal. I have been on it for many years and the only side effect I have ever experienced is staying up all night when I take it too late. I highly recommend it but maybe Christopher could provide one of his educational posts re: how it works, long term use, and any other comments he could share. Please Christopher??

  28. Brian L. September 4, 2017 at 5:20 pm #

    Sandy,
    You said your doctor doesn’t want you to start Ocrevus “for some reason “. Don’t be afraid to make your neurologist state what that reason is because you deserve to know. Also, educate yourself about that medication so you’ll know if that reason, whatever it is, is a valid one. I don’t know what type of MS that you have. While the success rate of this drug for ppms is marginal (25%), the impact on rrms is much better. And in some cases, the rrms patients are actually showing some improvement. So if you’re not on any ms drugs, or not doing very well on them (sounds like you’re not), I would not just accept “for some reason ” as your rationale for not starting this drug.

  29. Jan September 4, 2017 at 6:10 pm #

    Agree: the questions should be asked and answers given. I understand with Okrevus from Genentech that they never tested forJC virus during their clinical trials; one person in Germany who took Tysabri for three years got PML after the first infusion–very scary

  30. Jan September 8, 2017 at 9:09 am #

    Any comments re Ibudilast?

    5 days 2x/day, 2 days titration reduced to PM only of just Ampyra, and I feel worse.

  31. Jan September 8, 2017 at 10:39 pm #

    Mixed Ampyra.

  32. Jan September 8, 2017 at 10:40 pm #

    Nixed. (Jeepers, only two words, too).

  33. Christopher September 9, 2017 at 5:01 am #

    Sorry it didn’t work for you–Ampyra didn’t work for me either.

    Ibudilast trial for progressive MS ended in May of this year, but results won’t be released until next month at ECTRIMS in Europe. The only news on it is that trials are continuing, which is good news. Here’s more…

    https://multiplesclerosisnewstoday.com/2017/09/01/medicinova-to-share-ibudilast-trial-results-in-progressive-ms-at-ectrims-actrims-meeting/

  34. Jan September 9, 2017 at 12:24 pm #

    Thank you so much for that information, Christopher: really appreciate it.

    I was going to give it a longer try but only did four days of the normal double dose followed by two of the p.m. dose, and I stopped last night. Not that long of a try, but I wasn’t feeling well on it; today I’m really not walking. Some withdrawal or MS, who knows.

    May I ask how long you took it to determine? I was hoping to give it 2 to 6 weeks but didn’t last!

    All the unhelpful meds stuff is making me weary, so I am currently working on the possibility of an Emutrike, but it could be a little more complicated insurance issue. I like that it is taller and faster than the typical ones.

  35. Christopher September 9, 2017 at 7:50 pm #

    I took Ampyra for about a month, maybe a little longer.

  36. Jan September 9, 2017 at 10:12 pm #

    Thank you for that info; you gave it the suggested try time, at least.

    Looks to me that a Dr. at the Cleveland Clinic is involved in the Ibudilast trials here.

  37. Liz September 10, 2017 at 8:57 pm #

    Ann, you mentioned taking Modafinal works for you. My doctor recently prescribed a 100mg tablet twice a day but that doesn’t make much difference for me. Maybe I need to take a higher dose or try something else. Any suggestions? I’m constantly falling asleep and can no longer drive long distances for fear of nodding off.

  38. Sue in TX September 13, 2017 at 8:44 pm #

    Liz, i’ve taken modinifil for a long time. And it took me a long time to find the right dose for me. It is “off-label” for MS fatigue so there are no set standards for MS fatigue (other than safe doses). But a limited study showed a single 200 mg dose preferred by most MSers and no additional benefit was seen at 400mg.
    I find Provigil is very very good to improve speed of thinking/focus. For a day that i need to be sharp, doing work, I have a cup if coffee to start out day and breakfast. I take 100mg before shower. I like this timing because showering is tiring for me. I find the next 2.5 hrs are good and I plan to take the 2nd dose somewhere bewteen 11 am and 2 pm. On a very busy thinking day I will add a third 100 mg dose. So maybe the 2nd is at 11 am and the 3rd dose at 3 pm.
    For muscle tiredness/ fatigue, poor endurance, provigil is less helpful for me. Provigil somehow gives me motivation to do physical activities and help me be more persistant when my wndurance is low. I will take it before an outting with family. However, no amount of provigil will help me if my body has had enough or I overheat. I have been forced to lie down more than I care for when my mind was alert and wanting to accomplish tasks and my body decided to not coperate. I find this situation a type of hell. So i usually do a quick inventory of my physical fatigue level and what i need to accomplish in the day, before taking provigil. All in all though, provigil makes it possible for me to participate in my life. I wish you luck finding the right dose and timing for you .

  39. Liz September 14, 2017 at 9:29 am #

    Sue, thank you, thank you, thank you. This is very helpful. And not something I could find out reading google.

  40. Sandy Stolaronek September 15, 2017 at 11:44 am #

    Thanks for the great responses; Jan, Ann, and Brian. I’m on Tysabri and I also take Ritalin 3x a day for fatigue. It helps a lot, but it also takes around 5 hours for me to really feel like taking a shower, if at all. I’ve been on Tysabri for 3 years but I went off for about 7 months, because I felt it just wasn’t making a difference for me…. big mistake I suppose, because I seemed to have gotten worse in the interim. My neurologist thinks that I am either PPMS or PRMS. I have read that they are really one in the same but my symptoms seem to match up with PRMS, more than PPMS. One thing that is confusing to me though; is that I have heard that people with PPMS don’t have severe fatigue, but in PRMS, they do. Does anyone know if there’s any truth to this?