Diagnosed today- Met with neurologist and need advice on meds

[SJMCK]

I was officially diagnosed today. I was worried that it was going to be this long drawn out process that went on for months and months. Luckily the MRI's, symptoms and neuro test we enough. He said they would usually do a lumbar puncture but because I have Chiari 1 malformation it would be a really, really bad idea.

I had picked up the radiology report and MRI scans the day before I saw him, so I already knew what was coming down the line. When we first met with him my husband came with and told him that he thought I had MS. Hubby is a physician assistant and knew some of the symptoms (but obviously not an expert neurologist!). He told hubby he was hoping to prove him wrong. He honestly didn't think anything would show up on the scans. When he came into the room the first thing he said was "I hate to tell you this, but your husband was right".

He explained some of the MRI images and talked medical talk with hubby. Then he explained the drugs. Which brings me to why I'm posting. How did you decide on the current drug you're on? Cost? Method of administration? Side effects? I've been browsing through the med section, but it's overwhelming.

I have the specialty pharmacy calling me tomorrow to discuss which drug I want to start on. My pharmacy benefits only cover 40% and I haven't met my OOP yet. Financially we are fine, but not fine enough to pay thousands of dollars for meds. Neurologist suggested copaxone as one that I should start with.

Anyone have advice on how to navigate through all these options?

[hunterd]

WELCOME TO MS WORLD!! We are glad that you found us, but we are sorry why you had to. While you are here, take a while and look around and get familiar with things, and do not be afraid to attend any of the chats.
here is a link that you may click on for a list of dates and times that the different chats are held.http://www.msworld.org/community/cha...hat-room-info/
the choice of a medication is a personal one, to gain more information about your choices, I will list a few organizations for you to visit (and by no means are these the only places you could go).
ational MS Society http://www.nmss.org
Multiple Sclerosis Association of America http://www.msassociation.org
Multiple Sclerosis International Foundation http://www.msif.org/ Multiple Sclerosis Foundation http://www.msfocus.org/ 1-888-MSFOCUS
good luck!

[KateA2]

Most, if not all, MS meds have a co-pay assist program...you can find out if you are eligible my calling patient services for the particular drug you will be taking. The cut-off for help is quite generous: usually if under 85k there's zero copayment (but only if not on Medicare) and then lessening copayment help from 85k upwards.

[Seasha]

Hi SJMCK and welcome! There are so many DMT's available today, it can seem overwhelming in trying to decide. There is a new train of thought that going for the "big guns" drugs with the most efficacy should be used first to partially curtail anymore damage done to the CNS, thus less disability in the long run. But with these, the side effects are likely more pronounced. But, like hunterd said, it's a very personal choice.

Marco has written a sticky thread explaining the drug selections. It is well worth reading! http://www.msworld.org/forum/showthr...Drug-Selection

We also have a listing of drug companies to call for information as well as asking about financial assistance. http://www.msworld.org/forum/showthr...ial-Assistance

I know it can be overwhelming, but doing your own research before choosing is important. If I were you, I'd let the pharmacy know you need more time to make a decision!

Good luck to you and again, welcome!

[Kimba22]

Hi SJMCK,

Welcome to MSWorld, but sorry to hear about your diagnosis.

I know it can be overwhelming, but doing your own research before choosing is important. If I were you, I'd let the pharmacy know you need more time to make a decision!

I agree with Seasha. It might not seem this way right now, but it's OK to take a little time to make your decision. At least learn about your options first and remember treating MS is a more like a marathon, not a sprint. You also need to contact the pharmaceutical company and be approved for financial assistance. Otherwise you will be responsible for your co-pay expense.

I know I was given a few weeks to decide (my neurologist insisted on that) and there were only a few medications to choose from when I was diagnosed. In the long run, you'll realize waiting a week or two doesn't make much difference.

Tysabri, Lemtrada, Gilenya and Tecfidera are the bigger guns Seasha was referring to. But some people respond very well to the others. It's a gamble, and everyone responds differently. We also have our own unique course of MS, and won't know what it is until all is said and done. If only we all had a crystal ball.

Here are some links:

http://www.nationalmssociety.org/Tre...MS/Medications

http://www.mymsaa.org/about-ms/treatments/long-term/

http://msfocus.org/Treatments-for-mu...sclerosis.aspx

http://www.mscare.org/?page=dmt

Good luck ,

[msgijo]

... How did you decide on the current drug you're on? Cost? Method of administration? Side effects? ...

Hi SJMCK,
Sorry about your dx, but as you can see from the previous posts you have come to a great place to ask questions

All of these questions are valid concerns. But since financial assistance is normally available that one can be 'put aside' to focus more on the others.

Method of administration was a big one for me. When I was diagnosed there were only 3 options and all were injections. And I am truly 'needle phobic' . I don't like it when others give me injections, but can deal with it (just CAN NOT put a needle in myself!) so I used Avonex off and on until the first oral DMD can out (Gilenya), and have been on that since. So yeah this one is something that should be considered.

All of the DMD's have side effects. I don't believe that anyone has all of the side effects associated with any particular drug. Some people have none of the side effects. Most people do have some side effects, and many times there are ways to manage the side effects.
Sometimes it is advisable to switch medications around until you find what works for you, that you can tolerate.

It took me over a month to make my decision, and I only had 3 to choose from, so slow down and do a little research on them.

Best of luck to you

[Mamabug]

...How did you decide on the current drug you're on? Cost? Method of administration? Side effects? I've been browsing through the med section, but it's overwhelming...

Method of administration was a big one for me. When I was diagnosed there were only 3 options and all were injections. And I am truly 'needle phobic' . I don't like it when others give me injections, but can deal with it (just CAN NOT put a needle in myself!) so I used Avonex off and on until the first oral DMD can out (Gilenya), and have been on that since. So yeah this one is something that should be considered.

I am also a needle-weenie. I chose my med when injections were the only option. But, I made a totally different choice than msgijo. Because I hated needles, I avoided Avonex like the plague, because it is a honkin' big IM (intra-muscular) injection. I chose one of the subcutaneous injections, which uses a much smaller needle.

Initially, I chose Betaseron because I'd read good things about the interferons and I prefered some of its side effects to Rebif. However, after a number of years on Betaseron, it was not very effective for me, so I was switched to Copaxone. Recently, I changed from Copaxone 20 (daily) to Copaxone 40 (3x per week).

There is no single "best" medication for everybody. Different meds works better for different people.

It really didn't take me long to become accustomed to injecting my own med. A nurse will train you, regarding how to do it, and the meds come with an auto-injector. I prefer to use that than to inject manually, but some prefer a manual injection.

Best wishes as you begin the selection process.