Gilenya?

[FaithD]

Seven years and 3 neurologists later I am finally on my way to treatment for MS.  Dr. gave me a list of meds with pros and cons and wants me to think about which one I want to take.  Anyone have positive reviews for Gilenya?
Thanks!

[kwarendorf]

Hi Carolyn,

THe diagnosis of MS can be a long and frustrating process. The best place to start is by finding a neurologist that specializes in MS. Once you find a doc you will likely undergo a slew of tests. They can include all or some of these usual suspects:

A thorough clinical exam
MRI of brain with and without contrast
MRI of the cervical and thoracic spine with and without contrast
Blood tests to rule out MS mimics, like Lyme disease.
Lumbar Puncture (LP) to look for oligoclonal bands,
Evoked potential tests to evaluate nerve response.

The MRI of your brain is a good start. I would suggest that you get copies of your MRI on CD and a copy of the radiology report. Keep copies of all of your test results. I would also start keeping a symptom journal. It should include Date, time, place, temp etc when a new symptom appears or when there is a significant change in a current symptom. Having all of this information can be very helpful should you need to see more than one doc.

Keep us posted.

Kyle

[FaithD]

They denied me for Gilenya because I take low dose of a beta blocker.  However, I will begin Tecfidera next week and I am glad it was an easier process than I expected.  Thanks for the replies or I would not have researched the Tecfidera.

[Lulu54]

If Gilenya doesn't fit for you there are two other oral drugs approved - Aubagio and Tecfidera.  I'll hope one out of the three will fit your needs.  I understand your thinking that this was good news, especially after all the long waiting years you have put in.  Sorry you have MS but glad you have answers.

best, Laura

[FaithD]

Thanks y'all!  I have to say that getting the results back from my LP and having 11 o-bands as proof was good news.  I was so ready to move on - finally a doctor that didn't want to put me on anti-depressants to cure my exhaustion.  

I don't want to take a shot so I'm hopeful that I will be able to take the Gilenya.
I appreciate your responses!

[Lulu54]

AND congratulations on getting some answers.  Having MS is not a first choice but if you do have it, getting treatment is really important to slow or halt its progression. SEven years is a long time to wait and I'm glad you finally have a name for what ails you.

[Lulu54]

I hear good things about Gilenya and the doctors are REQUIRED to be diligent in making sure you are a good candidate to take it and folloowing your initial dose.  

You should have screenings for vision, liver and a cardio checkup before starting Gilenya.  It is also important to know that you have had chicken pox in the past or be given the vaccine.  

The first dose is given and then supervised for six hours to make sure there are no adverse cardio reactions. Once you have been through all of this and check out ok, you are good to go on Gilenya.  
The people who are taking it report really good things and are happy they have this option.

Are you considering any of the other choices or is Gilenya the clear leader?  We're happy to share our knowledge with you.  As immisceo said, you are great doing your own homework and asking questions.

See you around, I hope!
Laura

[immisceo]

You will find a pretty good representative sample of forum users' experiences here: http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412

Congratulations for getting to this stage and being proactive about informing yourself!