Medications - help please

[k4k1958]

Living here in the Bahamas - dx with RRMS, not a
common illness here, went to U of Miami for follow up. basically told to pick one of 4 medications and get started, the sooner the better.
Copaxone
Avonex
Rebif
Betaseron


Avonex is available through one of our pharmacies -$1900 per dose - my MD here thinks I should source out GILENYA
- the U of M do not use it therefore will not tell me the dosage, or advise me - not a prob but I might be able to get financial support - what do I take??
Should I go to another MD in the USA and see if they will suggest and prescribe me a treatment.
How long does one take these medications for?

[jessiesmom]

When you are told you have MS - a chronic disease - it is a lot to process. There is so much to learn and then you have to decided which of the Disease Modifying Drugs you want to take. The most frequently used ones are Copaxone, Rebif, Avonex, and Betaseron (aka the CRABs). You can get a lot of information on the drugs themselves on the NMSS website. You can take on look at the "sticky" on this forum entitled Prescription Assistance and Funding for resources on how to pay for the medications. I have been taking Rebif since my diagnosis 6 years ago. I pay $50 per month for my medication through the manufacturer's patient assistance program.

Gilenya is not usually approved as a first line treatment option for Relapsing Remitting Multiple Sclerosis (RRMS). Some of what that means is that insurance companies will not approve it unless you have tried other DMDs first and failed with them in some way. Although it is very attractive because it is an oral medication it also has a number of known significant side effects. You just have to educate yourself before making medical decisions.

How long do you take these medications? The best answer I can give you is that you take them forever. Not just 30 days or a year or even 5 years. You can certainly change drugs if one does not suit you or a new one comes out. You are not stuck with the first one you try. You should, however, expect that you will take some sort of DMD for life. Of course, there are some people who choose not to take a DMD at all.

I hope this has been of some help to you. Post again if you have more questions. There are a lot of people here who would be more than happy to share their knowledge.

[k4k1958]

Hi Jessiesmom
Many thanks for your reply - great help!

[FL_Jhawk]

I like Betaserone - tiny, short needles and very little to no pain at all upon injection.

Are you a US citizen? Are you a UK citizen, do you have private insurance? These all matter. Go to the websites of all the drugs and do you research.

I think you might as well read up on the disease as well. This is the best book you can start with. You will be educated when you see the doctor (but don't discuss diet with them). But it explains the different meds and the disease. B

[URL]http://www.amazon.com/Overcoming-Multiple-Sclerosis-Evidence-Based-Recovery/dp/1742371795/ref=sr_1_2?ie=UTF8&qid=1332460758&sr=8-2[/URL]

[Just MS me]

the only one I have tried is avonex, I chose it because of the. once a week injection, it is a im injection and can cause flu like symptons as can some of the others, but I am tired of taking injections now so I can't imagine taking more than 1 per week, but that is just how I feel, many people choose the others because of the smaller needles and possibly less side effects, I don't remember what they all are, plus with avonex I only pay $10 per month with copay assit. Good luck with your choice.

[Redwings]

Originally Posted by k4k1958

my MD here thinks I should source out GILENYA - the U of M do not use it therefore will not tell me the dosage, or advise me

Hi k4k:
It sounds like there's been a misunderstanding somewhere. The University of Miami is an [I]MS Center of Excellence[/I]. It would be extremely unlikely that they "don't use Gilenya." Far more likely is that your doctor there felt that it isn't an appropriate medication for you so didn't offer it to you as a treatment choice.

The purpose of a medical office visit is to address diagnosis and management. So once a treatment plan has been decided on, it isn't realistic to expect the doctor to discuss [I]any[/I] of the details of treatments that [I]aren't[/I] going to be used. Based on that, there's nothing inappropriate or sinister about the U of M doc not going into details about Gilenya.

Copaxone, Avonex, Rebif, Betaseron all have about the same effectiveness, so many doctors leave it up to the patient to pick the one that best fits their preferences and lifestyle. A lot of patients actually become suspicious of a doctor who picks one of those four and pushes it over the other three. From your post, it sounds like the U of M is willing to prescribe for you as soon as you pick one of the meds. So if you're looking for a doctor to prescribe a treatment for you, it sounds like you already have one and don't need to look for another one.

All four of those meds have websites you can go to for more information. Also, the US National Multiple Sclerosis Society website has information about the different treatments: [url]http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx[/url].

The responsibility for educating yourself falls on you. No one can spoon-feed the information to you, nor is it realistic to expect someone else to do your job for you. And unless you have no self-confidence or knowledge of your own preferences, no one is better suited to choose among equally effective medications than you are. It's part of advocating for yourself and being in control of your treatment.

You can also get information about Gilenya from its website and from the NMSS website. Before you start chasing it down or chasing down a doctor to prescribe it specifically, it would be beneficial to educate youself about it (and the other options) to decided IF you even want to take it, considering its risks vs. benefits.

Again, somehow there's been a misunderstanding about the U of M, their use of Gilenya and why it wasn't recommended for you. The only way for you to know why it wasn't recommended for you is to contact the doctor you saw at the U of M and ask why it wasn't recommended. What your find out might make you decided that [I]you[/I] don't want to take it. If you decide that it's still an option for you, then you can determine whether the U of M doc will prescribe it or whether it's SO important to you to be on it that you're willing to start searching for a neurologist who will.

So in summary, it appears as if you'll benefit from:
1) Educating yourself about the CRAB drugs and Gilenya to decide which ones you might be willing to take
2) Contacting your doctor at the U of M to find out why Gilenya wasn't recommended for you (again, it's inconceivable that it's because they "don't use Gilenya")
3) Deciding which med you want to use and determining which is your preferred doctor to prescribe it
4) Following the treatment plan you decide on

I wish you all the best in whatever you decide.