Told my SPMS has gotten so bad...

[fishead]

Went to Neurologist this week and was told, after a detailed exam, that I have gotten much worse. Neuro wants me to get on a DMD (I had stopped all DMD's). I chose to go back on Copaxone (with Neuros agreement that it would be beneficial). I will be starting the "3 shots a week" course.

Has anyone else gone BACK to a former DMD? How is is working for you? Thank you for all replies

[sardi_g]

I'm sorry to hear this, I hope the copaxone helps. I haven't gone 'back' on a dmd, but when I switched from tecfidera to copaxone I started to feel much better - energy, less reaction to heat, less numbness/parasthesia. A nurse from shared solutions said copaxone helps with ms symptoms. I'm skeptical about any statement that dmd's do more than what their name implies. But maybe slowing down the disease allows our body to up its healing process.

At any rate I soo hope this helps and at the very least slows down the progression.

Take care!
s

[fishead]

Sardi g,

Thank you SO MUCH for your response. Any and ALL information is helpful to me and, HOPEFULLY, to anyone else thinking of this.

I too, am skeptical about MANY claims these DMDs make, but am hopeful that they help with as much as possible

[Marco]

blabbering

All of the DMD/DMTs have value, but only to a specific subset of people. Roughly 1/3rd of all patients will fail on any specific medication. This has been the drop out rate for trials, and also in post-marketing experience. Also important to consider is how restrictive are the trial requirements. If the trial takes only MS patients that have had one flare in four years, how likely are they to have flares over the next year? In other words, the drug companies are permitted to skew their ending numbers by their front-end selection criteria. This would be similar to a lawyer being able to select all 12 members of a jury. Their odds of legal success would instantly become higher.

The drug Restasis, for dry eye, only has a 15% responder rate. Yes, the commerical with the pretty eye doctor that is also a client. 85% of dry eye patients will not experience the Restasi-induceds benefits. The number of patients with negative side effects may actually be greater than the number of patients helped by the medication. That's one of the arguments that kept Lemtrada from being approved the first time around. The difference between the patients harmed on Lemtrada versus those that benefited from Lemtrada was small. The drug companies have a lot of control over their patient demographics and that helps them bring drugs to market, and improve the efficacy stats for their medication. That's one of the reason stem-cel trials have such specific requirements. That's also one of the main reasons, PPMS patients have no FDA-approved medications. Think about how hard it is to show improvement in a patient group that is continually on the decline. Then factor in how small the percentage of PPMS patients there are, and PPMS patients are not the low-handing, high-margin, fruit.

Of the remaining patients, there will still be super responders, responders and non-responders. Those that have bad reactions or see no benefits will quickly quit the drug. Over time, patients that benefits will stay on the drug and the percentage of super responders will increase, and the percentage of non-responders will decrease. So on average, in a specific subset of individuals, the medication had positive effects. So pick any MS drug, and you will find a number of people that swear by it, another group that is indifferent and a number of people that swear at it. Without biomarkers to more accurately gauge progression, it's tough to accurately gauge the effectiveness of any medications, especially for new ones.

So while Copaxone's average reduction in Annual Relapse Rate may be 40%, it could be 95% for you. It may only be 5% for another patient. All that being said, when you match the correct therapy to the correct patient, wonderful things can happen. With so many MS drug options, there is little reason to be on a medication that delivers only subpar benefits.

[fishead]

thanks for the info Marco.
Before diagnosis, I was a Clinical Research Coordinator at Barnes Hospital in St. Louis (world renown hospital and research center). I know a bit about research, and you are on target with most of the info you provided.