Just a few DMD questions :-)

[lovemy6monkeys]

Up to now most my energy has been focused on symptoms of MS. I haven't really thought ahead to if I actually do get diagnosed as having MS.

Now that (hopefully) I will be having the MRI's that will give an answer to what is wrong with me, I'm thinking more about the after-the-diagnosis stage. My doctor said that if I am diagnosed he will want to start me on medicine right away.

I have two questions:
1- How do you know what medicine to start off with? Is it just trial and error?
and
2- are all DMD sent to your house? Or are some available through the pharmacy?

Thanks :-)
~Jess

[MsmsinFl]

Oh-- I also meant to say that I get Rebif delivered to my home -- none of the DMDs are sold at local Walgreen's etc.  (At $2500 per month, they wouldn't sell a whole lot of them!)

It comes overnight delivery via UPS, in an ice pack, on the day I specify to my pharmacy (I use CareMark, a division of CVS).

The prescription was faxed directly from my neuro to the pharmacy, which then called me to set up the insurance or payment details, and the delivery schedule.
  
The longest part of the process, for me (about 3 weeks!), was getting insurance to approve the coverage so Caremark would send me the meds.  Now I just call Caremark for refills, just like any other Rx, and they deliver where & when I tell them to.

I think the other DMDs work similarly.  

Hope this helps.

[MsmsinFl]

I've been on Rebif for 6 months.

My neuro prefers either Rebif (3 times per week), or Copaxone (daily).  
Rebif & Avonex are essentially the same med, but Rebif is 3x week with a small needle into the fatty tissue;  Avonex is weekly with a looong needle into muscle.
  
Beta is similar to Rebif (slightly different chemical composition), every-other-day injection;  I think you have to mix up each shot -- but many are successful on Beta.

I'm thin, and neuro said the daily Copaxone shots would be a problem, likely cause tissue necrosis & site reactions for me.  Also the Copax can burn for 1/2 hr or so after injecting.

I couldn't even consider the big Avonex needle!

For me, Rebif isn't too big a deal.  
I use the auto-injector, set at the next-to-shallowest depth setting (not much fat available).

Only feel discomfort on "thighday" -- and I don't use my arms.  
I'm very careful to rotate shot sites, and choose a spot with enough fat (belly & butt are best for me).  
Never had the flu-like symptoms;  so far, no liver problems.  
On the thigh-days only, I apply Emla ( prescription lidocaine cream) an hour before injecting, which makes it tolerable.

I also take benadryl & Advil before injecting;  I warm the spot before & after, and massage gently after to move the meds around into the tissues.  I also warm the syringe before injecting.

I always get a painless red spot 2 days after injecting, and the spot can last 2 weeks or more -- but it helps me locate the last injection site, so I don't overuse the spot.

I sometimes can feel a burn (not too bad) when the meds go in for a second or 2, then no further discomfort.

Although it's a bummer to remember the 3x week shots, it's really not that big a deal any more.  Better than doing nothing.

Good luck with choosing a med -- remember, many folks try more than one before they find the right "fit" for them.

[Lulu54]

Hi Jess,

All of the CRABs re injections.  The pill forms of DMD's are not yet FDA approved, but that may happen yet this year.  I've said it here before, it doesn't really matter which dmd you take, as long as you take something!!!

My neuro says the choice is like the Pepsi-coke challenge.  They are both colas but the preference depends on personal tastes.  The same goes for choosing which one of these- it depends on your preference of injection methods and possible side effects.

for me, I chose copaxone.  Even though it has to be given daily and initially stung a lot it does not cause flu-like symptoms and does not cause depression.  Also, I don't have to have regularly scheduled blood tests to monitor my liver function, like you do on the other ones.  those were all deciding or me.

good luck,
Lulu

[lovemy6monkeys]

Thanks for the replies!

Are all MS medicines injected? I'm not bothered by needles, so that wouldn't be a problem, but I'm curious :-)

~Jess

[Fluffysmom]

Hi, Jess

I'm on Avonex, and my meds are delivered to me by UPS.  There is a really good support system.  They give me a reminder call when its time to order my next shipment, let me talk to a nurse or pharmacy staff if I have questions.  I didn't like the large needles that came with my meds, and the pharmacy person let me know that a thinner needle was available, and now they ship those each month, too.

They check in with me to see how I'm doing, would have sent a nurse out to show me how to give myself my injections if my MS nurse from my neuro's office hadn't already done so.  They respond promptly.  They sent me a free starter kit, and I had my first injection two weeks after diagnosis!

My MS specialist thought that Avonex was the best choice for me, so I deferred to his wisdom, though he left the actual choice up to me.

[Ginosmommy]

After reading thru the past couple of pages of posts, there are a ton asking questions on the different DMD's. From what I found is it is really about personal preference or what your doctor prescribes.

My doctor was leaning toward Avonex but let me chose which drug I wanted to take and I chose Betaseron. I see a lot of people on here (and people I know personally) that are on Copaxon. I say do your research and decide which may be right for you. My Neuro told me if I decide I don't like which one I am on, she has no problem with me switching so that is an added bonus.

I got my first presciption at the pharmacy thru Kaiser but they have their own pharmacies on premise. I plan to order them online from now on and get it delivered just for the ease of having it at my doorstep but I am pretty sure I can go there and get it at any time also. This might be something you would have to check with local pharmacies about.