Enough already?

Just wondering, my neurologist said that the underlying of the MS disease is the B & T Cells. That there are medicines that attack either the B or T Cells which in turn slow down the progression rapidly. Why doesn't amyone invent something that attacks both? I had to do HSCT in a different country just to get my quality of life back. I understand that Pharmecutical companies only make money as long as we are sick, they have slowed the progression down to keep us sick & have made a lot of money. All while we MSers have paid for it with our lives. I had HSCT. Progression has stopped, my walking went from 3 blocks a day to 5 miles a day. When is enough really enough?

11 Replies

  • Agree totally

  • I am with you 100% on your views. And what really sends me over the top is when I see how much money is raised by MS SOCIETY and others to help fund the pharmaceuticals with research for a cure. Every dollar the pharm. co.s make they should be required to spend .50 toward research. And every penny the various organizations raise should go directly into services that will assist with daily living needs of those afflicted with the disease. And truly make an impact on our lives.

    Now that would really make a difference. And I would feel like something is actually being done for us. Rather than feeling like a revenue source!

    Stay on track. Be well


  • That's pretty brave to try HSCT.

    Cladribine targets both B- and T-cells, plus plasma cells, plus in the brain also. It's generic off-label with good phase III data for MS. Here's sales pitch: multiple-sclerosis-research...

    I tried it, easy to tolerate. It took some work to get prescription and supply of drug.

    I agree, the price hikes on the DMTs have been really high. As more drugs came on market, prices went up a lot. Weird economics here.

  • You said you were able to get a prescription so did you get this drug through your neurologist?

  • Yup. It took a bit of convincing to get the prescription. I had help from Dr.K from Barts meeting with my neuro at the AAN conference in Vancouver this spring. I got the drug itself from a specialty pharmacy in Sacramento. It's an IV cancer drug - most places were reluctant to mail it to me. It was about $2800 for 6 vials, retail. I used 5, that's it for the year.

  • What's HSCT like?

    Everyday I see more and more new

    Medicines for everybody

  • Hematopoietic stem cell transplantation. It a treatment where chemo is used to wipe out your immune system & your stem cells that were harvested are reintroduced to you to build a new immune system quicker. I did it in May & went from walking 3 blocks to I am up to 9.1 miles. I do a minimum is 12k steps a day. With my stride that about 5.4 miles.

  • I did HSCT in June. It's funny to hear people say "you're brave" for doing HSCT....I look at those who want to take the risks of declining without it or rolling the dice on getting PML, heart problems or liver issues with medications as "brave." I'm with you, "enough already!" Why won't the National MS Society support us? If these foundations and donors who support them knew that they could be helping to actually cure people they would be upset. There is one foundation locally who raises a million a year for them- i plan to show them that they could have cured 8 people with that money. Many only need someone to advocate insurance for them to overturn denials and they should be supporting legislature like 21st century cures act...they have lobbyists, they are perfectly positioned to advocate. They need to do their job.

  • Lemtrada works on the T and B cells it smashes them and then th body is supposed to rebuild new ones with the memory of MS

  • Lemtrada only attracts certain cells that are thought to be the cause of MS. Even tho it is only available on RRMS, the results are great but it's is questionable. It also has a laundry list of side effects. I believe that that's the pharmaceuticals way of maintaining a customer. My treatment is 2 med gor 6 months & never again. Lemtrada is a 5 year investment. From start to finish. I'd rather 6 months over 5 years. Lemtrada was actually the doctors 2nd choice. I would have done it if I couldn't do HSCT.

  • Because as Chris Rock says, "Ain't no money in the cure...." I'm glad you had HSCT too we need to talk about it in these forums to bring attention to it. If you're in the US can you try reaching out to the NMSS because they should be advocating for us and they have no interest in HSCT and I've about exhausted my patience with them.

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