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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Hi Chris. Welcome to our world..(or at least mine!) As you know - I also fall into the superwoman catagory...working 55+ hours a week, taking care of a family of 5 (3 kids) I have a husband who has been laid off forever and isnt doing his part as "house husband" these days, IM the only bread winner AND I am doing my graduate level degree- so baby- Im right there with you!!! I can help. But its not going to be an easy journey.

The first month on Rebif is absolutely "cake". They titrate the drug. Meaning, when you start it, the first 4 weeks are the lowest dose. The needles wont look any different, but they will have less medicine in them. Weeks 5-9 are stronger and then the last and continued weeks, you get to full doseage. If you are going to have side effects, they will kick in about week 6.

I did have them. I was up at night with the chills and nausesa- I wanted to die. I figured anything was better then injecting myself, even death. IT lasted about 3 months and only happened on shot nights, starting about 2 hours after the shot and lasting about 6 hours. By the time I actually figured out how to manage the side effects, they were starting to recede. A big part of what I went thru, is I was dx very fast. Unlike you, begging for a diagnosis; One day I was "fine" the next in a doctors office and within 2 weeks was starting Rebif. There was absolutely NO TIME to adjust to the possiblity or reality of having MS. Everything, from the doctors and MRIs and spinal taps, to learnin to inject, all happened way too fast.

I do want to add, that even with the side effects, I never missed a day of school or work and was always able to take care of my family. THere were times when I leaned on Coffee and sugar to get me jumpstarted, but overall, the side effects horrible as they seemed, didnt interfere with my life.

Now here is the good part. Since then, I have worked with so many others, teaching them what no one taught me, that I have an almost fool proof box of suggestions to MANAGE those side effects so that you dont wind up like me! Things like using Aleve, as opposed to Tylenol (like the nurse will tell you to use) help. Things like icing, instead of heat, help. Things like using Arnica Gel, which is sold in most grocery stores in the health food section (or health food store in the body products area) to massage after the injection- REALLY HELP! Suggestions like using Tylenol PM to help you sleep thru the worst of it, also help. and the biggest one, you want to avoid red marks? Hydrate more! More water intake means less redness to the skin from Rebif.

Within 5 months, it was like brushing my teeth. Something I did, without thinking. No side effects at all, and really- the fear of needles will be over within a week. You can use the autoinjector, which means you never really see the needle, but honestly, I prefer not to. WHen I can see what Im injecting, as opposed to hitting the button, I have more control, it stings less- (yes, Rebif stings when you inject it for about 20 seconds) and it seems to be easier on me when I do it myself...but you can use the autoinjector. You will see that in a few months you wont know why you were ever worried about the needle part of it.

And fast forward almost 5 years. I do have a host of lesions (over 50) and since starting Rebif, not one new one. No new progression, no new symtoms- its ALL GOOD! You do have to learn some new tricks while on this drug- but you can travel, take it with you on airplanes- manage to live a normal life. Remember though, 6 FULL MONTHS before the medicine is actually working. If you stop taking it before then, you didnt give it a chance to build up in your blood stream and do what its supposed to do.

Thats enough for now. We will talk as you go. Let us know when MSlifelines nurse is coming to train you. Those nurses are wonderful too...they will help you as much as you need it, until you 'get it".
Hugs and congrats(?)
Nikki





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