changes to my life??

A board to discuss the Multiple Sclerosis modifying drug Rebif

changes to my life??

Postby kirsty23 » Fri Aug 20, 2010 7:25 am

I've decided to take Rebif as my treatment....I didn't really have any questions racked up for when I saw the nurse with my decision but have since and wondered if any of u lot could help wiv any answers...
I wanna know how it;s gonna change my life....Will it make a difference to me drinkin? Recreational drug use? What about if I go away campin, how would I store it while I'm on a camp site? Also, what affects have Rebif had on u personally??
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Postby carolsue » Fri Aug 20, 2010 9:21 am

Kirsty,
It hasn't changed my life that much. I drink and occasionally use rec drug. I think I get a little more dehydrated on injection nights, so if I'm drinking that night too, it's good to really remember to drink water to avoid hangovers. I chose rebif over other drug therapies in large part because of the somewhat flexible 3 times a week schedule. Last week I did Mon-Wed-Fri. This week I'm doing Sun-Tues-Fri to accommodate my social life. I camp and backpack and travel frequently, even went on a 19 day river trip with rebif. My neuro told me rebif's "pretty sturdy" and I think he's right. If you're smart about it, you can wrap your syringes up and put it in the bottom of your pack to keep it out of the sun. Put them next to a bottle of water, or even put them in a waterproof container (pelican brand cases are great) and wrap the container with a wet towel. The principle of evaporative cooling works great. On the river trip, the river water kept it plenty cool. And with a little pre-planning, I can often adjust my injection schedule to minimize the number of syringes I need to take on a camping trip.

I did have minor flu-like symptoms at the beginning but ibuprofen was enough to treat them. I don't have them anymore. I do get red injection site blotches that last quite a while and sometimes I bruise (I bruise easily anyway). The marks might raise an eyebrow or two in the locker room, but I'm not self-conscious about it anymore.

Hope this helps, and hope you continue to do the things you love to do!
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Re: changes to my life??

Postby Bubba » Fri Aug 20, 2010 6:05 pm

kirsty23 wrote:Will it make a difference to me drinkin? Recreational drug use? What about if I go away campin,


It hasnt affected my drinking at all. I go thru roughly 15 beers a day on my days off, 5 a day when I work. As far as camping and storing it? Well it keeps for thirty days at room temp so I wouldnt sweat it. I just figure out how many shots to take with me when I goand stick them in my backpack. In fact Rebif has not impacted my life at all... :D
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The problem comes with the decision of weighing the unknown with the unknown.
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Postby kirsty23 » Sat Aug 21, 2010 10:57 am

Excellent. Thanks u two, you've both made me feel loads better :o)
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Postby Loumalone » Sun Aug 22, 2010 10:31 am

:(
Last edited by Loumalone on Mon Aug 23, 2010 3:26 pm, edited 1 time in total.
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Re: changes to my life??

Postby NHE » Sun Aug 22, 2010 8:33 pm

To Kirsty, Loumalone, and anyone else...
Regarding alcohol and other recreational drug use. I think that one really needs to ask the question, "which brain do you want?"

Dr. Daniel Amen has done many brain scans using a technique called Single Photon Emission Computed Tomography (SPECT). These scans measure blood flow in the brain by means of a radiosiotope tracer which then allows an inference of brain activity. After looking at several of the SPECT scans of people who have indulged in a variety of recreational drugs, and considering that with MS that we have disrupted blood flow in our brains to begin with, it is difficult to imagine that brain tissue in the areas affected by recreational drug use could be healthy. Adding recreational drugs on top of the damage caused by MS may be analogous to rubbing habanero pepper dust into an open wound. Frankly, I want all of the healthy brain cells that I can possibly have.

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