How true is this statement?

[LilStep]

My neuro wants me to start Gilenya because I have tried Copaxone, Tysabri and Rebif and had side effects that were uncommon.

Her statement to me was, "Since you can't seem to tolerate injectables, then it's time to start Gilenya." I just don't believe that. I haven't tried Avonex or Betaseron. Shouldn't I try these first before I jump into something that I am really not comfortable with? I don't see my neuro until August, but she wants me to make a decision and call her. I kinda just want to wait to see her in August, so I can discuss this in person.

I really don't know what to do. I seem to be in a relapse now and I am really worried that if I don't get on some sort of treatment soon, I will end up having a severe relapse that may cause major harm.

What do you all think? Please I need advice.

[Bob698]

I'm thinking its the "uncommon" part of the side effects that have your Neuro spooked. You may have an allergy or reaction to the injectable part (the fluid not the Rx).
It stinks but we all have to weigh the benefits and risks to the meds vs not doing anything and letting the disease do what it wants.
I'd feel a little better knowing that G made it past the FDA trials plus you won't have to stick yourself anymore.
Worst case, it may be just that you haven't found the right med yet and if G doesn't work out your neuro can always put you back on another injectable.

[heliotrope]

Take a look at the MS Society website: http://www.nationalmssociety.org/abo...nts/index.aspx.

Avonex, Rebif and Betaseron are very similar medications.

The fear is that if you've had side effects with one, you're liable to have them with the others.

[salamandertom]

Personally, I think you should see if you can see your doctor sooner to discuss this. I think the uncommon reactions are all the more reason to LET you try the other injectables. It sounds to me like you had different than typical reactions - so mabey you may find one that works. I am not a doctor - but your doctor will be the one to know if this is a good idea for you. If you are uncomfortable with trying the oral med, and want to try an injectable again, than that is your right as a patient and you should pursue that with your doctor's guidance of course.

Good luck. Let us know what happens.

[andeolus]

I was on Rebif for about a year before my neurologist determined that it just wasn't working that well for me. We discussed other treatment options but they were really pushing for Tysabri or Gilenya. I didn't like either options because of the very dangerous(to me at least), potential side effects. I wanted more options, especially since I'd only ever been on Rebif. It was explained to me that the interferons work in very similar ways so if the Rebif wasn't effect, chances are the other ones wouldn't be either.

At that point we did decide to give Copaxone a shot to see how that would work. It's been a few months and so far so good, but I understand that there are not a lot of other options if it doesn't end up working.

[Mamabug]

My understanding is that, if one of the interferons (Rebif, Avonex, Betaseron) is not effective for you, that the others won't be either. (Copaxone uses a different mechanism.)

However, I am not sure if the same theory holds true regarding "side effects that were not common".

~ Faith

[LilStep]

Thanks for the replies. I am scheduling an appt. to see my neuro sooner than August.

I had a nuclear stress test done today for my chest pains and I won't get the results until tomorrow. If everything is ok with the test, then I am considering Gilenya, only because I think it is my last resort. Since rebif, avonex, and betaseron are basically the same, they will probably give me the same chest pain reaction and I don't want to go through that all over again. Copaxone was working until I built up antibodies to it and then it quit working for me. Tysabri made my legs go numb, and I had severe pain in my ears. Don't want to go through that again.

So, I guess the only option is Gilenya. I am really worried about not being on anything. Since I stopped Rebif, I have had severe leg spasms and trouble with my vision. If the stress test shows something irregular, then I am screwed. I don't know what I will be able to take.

I'll post when I get my results back and let everyone know what my next step will be. Thanks again for your replies.

[heliotrope]

There are other options, but they have their own issues: IVIG, chemo, anti-rejection drugs, etc.
Keep us posted!

[salamandertom]

I have also heard that they work with the same mechanisms, but they are not nessicarily the same. It makes sense that they would not all be ineffective and have the same side effects since they are all different interferons - at least i am pretty sure. Just speculating of course, I am very interested to hear what your doctor thinks, please let us know.

I am sorry to hear about your chest pains, that is an unfortunate side effect for sure. I would definately discuss this at great lengths with your doctor. I know that the oral med is not a great option for me given my cardiac history with prednisone. HUGS and good luck.