Jan 152005

There have been some comments to the blog that I have found interesting.

  • Sue posted about her Mannatech experience. Yes, this truly is the post of mine that is never going to die!
  • Anonymous posted that he has had good luck with Jolley Roger hard candy with the Solu-Medrol taste. While I am hopeful that I have taken my last dose of Solu-Medrol, I’m sure that isn’t the case; and I certainly hate the flavor in my mouth!
  • Kim chimes in on the Curry spice. Tumeric is what I’ve always heard should be taken for MS, but it is used in India so we know it must be good! Kim seems to confirm what I thought.
  • An anonymous post that their very first installment of Tysabri went very well. Hopefully anonymous will drop me an email and let me know how the treatment is working out.
  • MikeR wrote about the potential of taking Tysabri at home, but Biogen isn’t recommending that at the moment. Yes, I am interested if/when I start taking Tysabri; but why the heck aren’t they recommending home infusion, is there some danger with the infusion???

Well I guess these are the major highlights of recent comments on older posts.

Dec 202004

I assume others here also got a note asking for an interview in regards to Tysabri. I decided to do the first set of questions via email. I’ve sent the answers to him but thought I would post them here too:

What are the most important factors you would consider (or have considered) when choosing a drug treatment for MS? (Factors such as the drug’s cost, insurance coverage, efficacy, safety, convenience, doctor’s recommendations, experiences of friends/peers, other factors?)

The most important factor is efficacy of the drug in preventing relapses and thus preventing or slowing disability. While a secondary factor safety is a big issue and could get the drug eliminated from the choice list.

Do you have any strong opinions about Tysabri (formerly Antegren), especially in terms of efficacy, safety and/or convenience?

I am very optimistic about Tysabri and their claims on efficacy. We still don’t have the results of the phase III trial, which it is my understanding because the trial is not over. Even when that is done we will have only two years worth of data and thus not a long track record of efficacy as with the other treatments. Furthermore, while the initial disclosures seem to indicate the drug is very well tolerated the full safety report won’t happen until early 2005. If I can wait I would like to wait until 2006 so there is more time to gather safety information; especially since this medication is modulating the immune system.

What MS therapy do you currently utilize? Would you/have you considered switching to Tysabri?

I currently use Rebif. While I am not extremely happy with the performance of Rebif I’m hesitant to switch just to Tysabri. I am very interested in using Tysabri as a combination therapy with Rebif (or Avonex) if not for the combined benefit then at least I will be taking a medication with a proven track record for efficacy.

Tysabri requires a monthly 2-hour-long visit to an infusion center for administration…Do you know whether you have reasonable access to such an infusion center? Would this method of administration make you more/less likely to choose Tysabri?

I do have access to numerous infusion centers within the Dallas area. This type of administration has no impact on appeal to me, neither good nor bad.

Would you be willing to pay a higher co-pay for Tysabri (than for other leading pharma products, e.g. Copaxone, Betaseron, Rebif, Avonex)?

Yes, but I don’t see why they would be necessary.

Any other thoughts about the MS community’s collective response to Tysabri (or any of the leading treatments, pharmaceutical or otherwise)?

Overall I think the the MS community has had a very receptive attitude to Tysabri and are much less cautiously optimistic than I am. A key factor in them taking Tysabri is getting their neurologist to want them make a switch to another medication, which will probably be based heavily on how they are reacting to current treatments. I last spoke to my neurologist before Tysabri was approved, but he was optimistic about Tysabri (then Antegren) at the time. Assuming I could get insurance company approval he would probably like to begin a combination therapy.