How in the heck do I pick a Disease Modifying Medication?!

[Ojibajo]

I feel bad for posting questions on here so much. I don't mean to hog the discussion board, but I this is the only place that I can think to go to for quick info.

When I was diagnosed a few weeks ago I was giving a stack of brochures on medications. They all sound terrifying. All of them seem to have one horrible sounding side-effect or another. I think I can handle flu-like symptoms, but I what about possible liver damage (I only have one liver!), heart problems, skin damage, drop in white blood cells (I'm pretty sure that I need those!), throat constriction, etc.

It seems like a majority of people are on Copaxone, but I hate the idea of DAILY injections. Some of the meds are only once a week or three-times a day which sounds more manageable. Is anyone on here on Gilenya? Any feed back that you could share?  

I feel pretty overwhelmed with this decision. I would greatly appreciate any advice.


Thank you,

Amy

[sllowe]

Hi Oji,

I'm glad to see you are considering the injection schedule. It's an important detail that can make or break sticking to therapy.

You sound as if you already got through one important step and that is knowing for sure what you don't want to commit to. I'm not a daily type of person either so copax was out for me - I'd miss doses put it off for sure.

Other is needle size - also what you sound as if you are taking into consideration. Rebif is very small and super thin but it's 3 x's a week (I'm on that). That too you'll have to look at and decide if you'd be able to stick to it.

If you are a weekly type and feel safe w/that then avonex will be for you. Gilenya you'll definitely have to weigh out the side affects carefully since it doesn't have as long of a track record as the original CRABs.

I was super overwhelmed too - thought too hard about it having to be the "perfect" decision. I know now that just have to consider these couple things and then dive in. And, if it turns out you have to switch, then cross that bridge if you get to it.

Most of all don't feel bad for questions. If we've gone through it or know about it we'll give you all we've got!
(((hugs))
shell

[Ojibajo]

Thanks Jean,

It's not the needles so much that I was worried about. It's more of me being afraid that I will miss a does Also the type of injection (subcutaneous vs. intramuscular). I assumed that MS injections had larger needles than syringes used for insulin, but I really have no idea.

[jean_619]

Hi Amy,

I started on Copaxone about a year ago when I was diagnosed.  I decided on Copaxone because the other drugs had potential side effects of depression.  Since I was already diagnosed with depression and taking an anti-depressant, my doctor advised Copaxone for me -- but in the end it was my decision.  I was also hesitant about the other drugs anyway due to their side effects of flu like symptoms.

I do not mind the daily injections.  My father had diabetes and did injections 3-4 times a day, so I was used to seeing needles.  I also had many blood tests over the years and worked at a Red Cross blood donation center, so needles didn't bother me at all.  What I like best is that there is an injector you can use, and you really don't see the needle at all.

At first I had minor site reactions -- welts and redness -- but over the past year that is mostly gone and I don't have any.  

It seems the side effects are different for everyone.  The good thing is that most doctors are willing to change your treatment if you are having problems.  So if you choose one now, you aren't stuck with it for life if it isn't working for you.

Feel free to ask me any questions.

Jean

[Sparkysarah]

As Alex says it is really up to personal decision as to what DMD anyone choses as they all do the same job and it just depends on what you think will suit you best so go with your gut instinct.

As for Gilenya, I suggest you "serach this community" (top right hand corner) and you can find some feedback from other members who have recently started on the drug.

I am on an oral drug trial in UK for similar drug to Gilenya and may be on placebo although am sure I am on the drug. However I will be on the drug in 10 days time for certain when I go into the extension trial so will feel better able to comment then. As far as I am aware no-one so far has had any adverse effects butit is obviously the longer term side effects that are less known as it is such a new drug.

So my advice is go with what feels right and listen to your own instinct.

Best wishes

Sarah

[HVAC]

Everyone has their favorite. You just look at the benefit/risk and what fits with your lifestyle and decide. Part of what is overwhelming is choosing a DMD makes this experience real. It is wow I really have a serious illness and that is pretty scary. It gets better.

Alex

[Magie43]

I have been checking this Forum for the past three months and decided to join so I could answer your questions.  I was Dx with MS on 1 Nov and started taking DMD on 20 Nov.  My Nero wanted me to start the DMDs right away.  I went and saw him a few days later and decided on Rebif because of the size of the needles.  So far I have had very few reactions to the drug.  I do take tylenol or Motrin before I give the shot and that seems to take care the flu like systems.  I had  a blood test done on 20 Dec and my liver counts were normal but a little elevated from my original blood test.  I have a followup appt with my Nero on 20 Apr for another blood test.  Last week I called my Nero telling him I was worried about my liver count because I did not feel good so he had me come in for another blood test and my liver count was almost back to my original count.  I do have site reactions on my legs.  The nurses for Rebif are great they call about once a month to check on you and I have called them many times.  

[Ojibajo]

I think I am trying to decide between Rebif, Avonex and Gilenya.

At first I wanted Gilenya, since it is oral but it seemed like it had a the most potential risk or side effects. I am also afraid if it's newness.

I like the idea of an intramuscular injection  of Avonex as opposed to the subcutaneous injection, and the fact that it is only once a week, but it does seem to have a longer list of side effects and the info I had said that that effect most people get the side effects.

[Sumanadevii]

I remember the fear when having to choose which DMD.  I take Rebif.  I was so afraid of the flu like symtoms that I took an extra month on a lower dose.  Guess what?  I have never had a reaction to it.  Believe me, before you have liver damage, a good neuro will have you off the medicine.  Your blood will be tested at different times to be sure that doesn't happen.