Need to change from Copaxone to another MS med. Any preferences??

Hey Coleen

Well one nice thing is that we do have choices nowadays and soon we will have even more choices of meds for stopping the progression of Multiple Sclerosis.

I want to preface what I am about to say by telling you that I am currently not on any MS meds so I have no experience in this matter.  I have been diagnosed for a year now and I am awaiting my next MRI to make my decision as to what meds I want to take (if any at this point) so I am in a similar boat as to researching the current meds available. 

To be honest the interferons scare me some too.  Many people use them and many do really well on them.  Hopefully some of these folk can talk about their experience with them.  I think making the decision of which meds to use is a very personal one between you and your neurologist.  When I began my personal research to decide which med would be right for me these are the questions I asked.

* How effective is the treatment?  What are the efficacy rates for this particular med?  Don't rely on the manufactuer to provide the stats.  They will show the most favorable stats.  Look to independent studies.

*  What kind of side effects are we talking about here?  Do I need to worry about any drug interactions?

*  Will I be able to afford this drug?  Will my insurance cover it?  I know there are ways around the cost but honestly...how much are you willing to invest in time and energy and money to get a particular drug.

*  Will I be able to commit to using this drug as it is supposed to be taken?  Can I give myself a shot every day or every other day?  Will I be able to continue taking it even if it has some undesirable side effects at first? 

These are the kinds of questions I asked myself.  And the bottom line is do the benefits outweigh the risks?  Is it worth it? 

Also...seeing how other people fare on the individual drugs can really help to make your decision.  What are other people saying?  When I first was researching the interferons...I was most interested in Rebif and I found lots of stories from others who are taking this drug here.

In talking to my neurologist, she recommended that perhaps I wait for the new oral drugs to come onto the market...which she tells me should be soon.  I am particularly interested in the oral drug Fingolimod.  Another name I have a hard time spelling!

Here is an article on Health Central written by one of the neurologists here about this new drug.

Here is a second article citing the stats about its efficacy for treatment.

And lastly here is a personal blog by a lady who did one of the clinical trials for fingolimod and all of her experiences.

Again I want to stress that deciding upon a medication is a very personal decision between you and your doctor.  What is right for one person will not be right for another.  My MS is not your MS.  You have to make such decisions for yourself as well as be the one responsible for that decision.  And it is not an easy decision to make by an stretch of the imagination.  It isn't like poppin an aspirin or something...these are heavy duty drugs which affect the immune system.  Lots of thought and consideration needs to be taken before a decision can be reached. 

I am curious as to how others did reach their decision of what drug to take...if they take any at all.  What was the process like for them? 

Thank you so much for asking this question.  I hope others talk about their experience as well.  And please do tell us what you do finally decide. 

Hey Coleen...

Just checking in with you to see if you have chosen another med and what it is.  I am very curious to hear if the new medication is working for you or not.  I am still deciding when and if I want to go on any of the current MS meds so I am always interested to hear how people have made their drug decisions and how it goes.

Let us know!