Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
have been taking Rebif. I actually
am quite pleased with it so far, but
I will have to say that I too have
been having some restless nights.
It may be something to do with my
BP...I don't know. I will get back
to you on that. I will be disapointed
if it is, because the medicine really
seems to be working for me in other
areas.
Are you not rotating your injection sites? The nurse and the manufacturer are VERY insistent about rotation of injection sites: arms, legs, tummy & backside, rotate-rotate-rotate. There is always a slight mark that goes away before you make it around to the next injection time.
Take an Advil or generic acetophenomine right before or after your injection time, that should stop the flu injections BEFORE they start.
I take my shot out the night before and do it in the morning. I take two Aleve at least a half hour before my shot, then I need to eat breakfast. I re-dose with Aleve around 7 p.m., right around dinner time. My neuro gave me some muscle relaxers, which have really helped with the overnight stomach spasms.
Another thing that helps is I use the end of a water bottle on my injection site. Put the bottle on until it's good and cold. When you take it off, the cold area is red and forms a "target" for your shot. When you do the next shot, just line up the edge of the bottle with the injection hole from the last shot. It's usually still visible after 48 hours. Lather, rinse, repeat. Your shot sites are perfectly spaced, don't overlap, and allow room for injection site reaction. Also, every time I start a new box, I move to a new area. Example:
January: right leg
February: right stomach/hip
March: Left stomach/hip
April: Left Leg
Therefore, each area is used three times per year. Rotation!
Keep us posted!
i have a lesion in the brainstem, deep in the medula where BP is regulated. i had argued all along this happened because of the MS and it wasn't until i went to Mayo that the doctor agreed according to the brainstem lesion location.
keep an eye on this as it can get out of hand. start checking your bp and seek treatment if it's too high.
I do not know if the Rebif has anything to do with it at all. The Neuro doesn't know of elevated levels as a side-effect.
One thing we are going to look into is the possibility of any other changes. Because of the horrible Prednisone (x8 rounds in a year) and Solu-Medrol (x3 rounds in that same year), my weight is 20 lbs more than what it had been.
Regarding the other comments in this thread about side-effects and site reactions, Rebif has an acid-based solution which is why they tell you not to let it come in contact directly with your skin. This is why (or so I have been told) the solution hurts/stings at the injection site. I haven't tried the ice-prep but I DO know you can keep Rebif at room temperature for several days - even up to a week. I always take out 1-2 doses in advance and keep in my travel case.
Another tip I have found is to warm-up the tissue at the injection site beforehand. It might be something to do with either adrenaline or endorphins. For example, I might do some of my exercise warm-ups then smack my under-arm (or planned injection site) a bit before the injection.
The pain of the injection thankfully doesn't last long, but even after 9 months I still have the muscle/joint aches 2 hours after the shot. If I would follow the advice of my nurse rep, I would make sure I was very hydrated before the shot, but doesn't always happen. Either way, I try to do the shot right before bed and with a chaser of Ibuprofen or Tylenol. So far, I havent had a significant exacerbation and some minor things such as the extreme fatigue and some cognitive difficulties have improved.
Good luck to you all and I think we can all agree we hope for a cure, but manage the best we can each day.
Amy
Cathy