Starting Rebif

[kriscake]

Morning everyone.
I visited with my neuro yesterday and he decided that my first ms med should be Rebif. I'm all for slowing down what is happening to me. I do not like the things my body is doing and willing to give it a try.

Just sort of scared of how things will be. He said that I have spots on my spine and that spine disease is something he wants to treat a bit more aggressive. Is that really true?

I know everyone is different, everyone reacts differently everyone has different symptoms but is there things you wish you had known before you started? Things I should be asking the nurse? I have given myself injections before. Needles don't scare me but I have never had a shot like this.

[Sara Angela]

I was on Rebif for four months. The support is outstanding. You will have your own MS nurse and you can call in to get help from other fellow MS patents on Rebif.

Sara

[Alicious]

Hi kriscake

I too have spinal lesions, and while you don't want any lesions at all , the spinal ones are the ones most likely to leave you with physical disabilities over time, so they do take those very seriously. If you think about it, there isn't a lot of real estate in the spinal cord, so small lesions there can be devastating if they keep signal from going where it needs to go.

My advice, from reading these boards and my own 3 months on it:

1. Hydrate like heck the day of the shot. It truly makes a difference.

2. Premedicate with ibuprofen or whatever else your neuro recommends.

3. Take the shot at night right before bed until you know how your body will react.

4. Try to make the morning after each time you titrate up (you'll gradually increase your dose so you can acclimate) a morning where you can go slow if you need to.

5. Ask for help if you feel your symptoms are too much. The Rebif nurse will have advice, as will your doctor.

6. Remember that not everyone gets the flu like side effects, and some people get very mild ones, so see how your body does and try not to worry. (Easier said than done, I know!)

[jmfmwc]

Hi Kriscake - I also have a ton of spinal lesions and was told we needed to be agressive in a DMD choice. I was diagnosed in 11/11 and started Rebif in 12/11. It was tough at the beginning and through the titration up to full strength. I had about a month's time when I wondered if I could really tolerate the flu symptoms. I'm glad I kept up with tylenol and waited things out.

I have very few nights of flu symptoms and they seem to worse on the nights I don't hydrate like I should. I agree that MSLifelines has been fantastic in their support! The nurse came out to train me and has also come for a follow up visit to check out my injection sites and just to check in. Best of luck to you!!

[struck-a-nerve]

Chose avonex but that was vetoed by the doc. He said it is not strong enough for my aggressive RR. He wanted beta but I cannot get funding for that so rebif it is. Waiting on approval now. I am grateful to follow this thread and will be trying all of your tips and tricks.

On another note does anyone know if there is any stock in one interron being trigger than another? Doc wanted me to start Ty as he thinks my disease is that aggressive but with a very new dx I chose not too. Supposed to have my firt MRI after three months on rebif.

Appreciate the help. Hope you all find joy in your weekend.

[Alicious]

I'm actually in the process of switching to Avonex as I don't acclimate well to interferons, so once a week is better than refusing to take the 3x week Rebif due to side effects. (And, statistically, Rebif and Avonex have pretty much the same results.) Kriscake--I'm the far end of "normal." Most people acclimate just fine to Rebif, I promise.

Struck-a-nerve, I'm not sure I understand your question--by trigger do you mean better? Overall, the interferons offer pretty much the same benefits, no matter which one you choose. If your neuro prefers one over another, though, I'd go with it. They are taking your personal health situation into consideration, and if they have a preference, I'd trust their instincts so long as it resonates well with you. Tysabri is my next drug if I can't tolerate Avonex/it doesn't work well for me, and honestly, it scares me quite a bit so I'd rather make an interferon work. I'd have made the same choice as you, with four known spinal lesions and 20+ brain ones, to try an interferon first.

[struck-a-nerve]

Struck-a-nerve, I'm not sure I understand your question--by trigger do you mean better?

Apparently I cannot type

I was supposed to be asking if there was any interferon that was stronger than another, as my doc seems to feel that Avonex is not as strong as Betaseron...since I cannot get that it seemed like he settled for Rebif. I was under the impression that you expressed that they are all very similar, but you are right, and I am going with his opinion.

I am also with you regarding the Ty...it scares me, and frankly they all do. Holding my breath that this works out, cause the side effects sound like they could be a lot.

Thanks for the feedback! Good luck with your change to Avonex. I hope the once a week injections work out for you.