Patient1
Guest
Patient1
Guest
And, I'll give you guys another hint - Neuros do not recommend one therapy over another. I've seen several. They leave it entirely up to the patient. I was told to go home, look them up online and come back and say what I wanted. I initially chose avonex because I loved the idea of once a week; but then, as I said, the side effects were too much. I recently began seeing a very well known and respected specialist who RAVED about copaxone. You may call it "placebo" but the fact that it is not a chemical being introduced to your body is very attractive to patients and physicians. I would LOVE if an oral came to market that I could trust. But, it's just not the case. My first MS symptom was optic neuritis, if you think that I would ever take a product that could present the same symptoms - you're insane. I might as well go stick a fork in my eye. Not going to happen. They just don't know enough about MS to come up with an effective therapy. Believe me, I wish that wasn't the case - but it is. How can you treat a disease that you have no idea what causes it and it's so different from person to person? There's someone out there right now that can't walk who is under the same diagnosis as me - I ran 5 miles today - really? I call BS...
You are quite correct. Neuros do not tell the patients what therapy to take. It is strictly up to the patient to decide. They provide you with information so you can make the best informed decision. Unfortunately, all treatments sort of suck. What works for one, does not work for another. That is just a simple fact and if at first you don't suceed - you try again.
The best thing these biotechs and drug companies can do is simply be honest about the efficacy, side effects and their realistic risk rather than candy coating the whole thing with marketing statements that are grossly misleading. Some idiot on one of the boards implied that PML is much more manageable and not such a big deal if you contract the virus. After all it has greater than a 50% survival rate. I am betting that person never saw a patient with PML (I have).
Once the facts come out, these companies look like specieous greedy morons and few patients end up trusting anything they spew. The biotechs often manage to slit their own throats with their own shortsidedness and stupidity.
I found success with copaxone and I'm grateful. I'm not about to jump to an oral if what I'm using is working. That is just nonsensical. I don't mind a daily injection. It's become such a part of my life that I don't really give it a second thought.
The only thing I don't understand is how can you say copaxone is not a chemical being introduced to the body? Its a blend of polymers that get directed to the immune system subcutaneously. Even natural methods involve chemicals.