Life with MS & EDS

January 18, 2010

Interventional Radiologists

Filed under: Uncategorized — by mseds @ 7:39 pm
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This Is MS posted fantastic advice on how to track down someone to test for CCSVI.  They recommend trying to find an Interventional Radiologist to do the test.  Their site has a suggested e-mail you can use to get things started.  I plan to start e-mailing people tomorrow and I’m finally going to make an appointment with my regular family doctor to see if he can recommend some interventional radiologists.

Does anyone know any interventional radiologists in the Philly area or within a few hour drive?

January 15, 2010

Frequently Flu-Like

Filed under: Uncategorized — by mseds @ 11:00 pm
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Since my third full-strength Rebif shot, I’ve been frequently flu-like.  The symptoms still only last for a few hours, but they are happening after every shot.  I’m getting a little smarter about it now.

After Wednesday night’s shot, I woke up at 4 a.m. (to pee, of course) and had a 102 point something fever.  I could feel the heat radiating off of my head (it was almost like being on Lupron again.)  I took two Tylenol and went back to sleep until 7.  I woke up feeling better than I did after Monday night’s shot when I waited until 7 a.m. to take the Tylenol.   I was able to get to work on time Thursday and felt tired, but functional and was fine by around 9 a.m.   I’m so thankful to be a teleworker, because if I had to actually have the energy to do a commute, I think I’d be using a ton of sick leave.

So, tonight I’m going to be even smarter about it.  I’m going to put the Tylenol and a bottle of water right on my night table.  That way when I roll over in the middle of the night I won’t even have to get out of bed to get the Tylenol.  Aleve (which I take before every shot) is supposed to help for 12 hours, but seems to not to a thing for me after about 6 hours.

Oh, I learned a couple of interesting things today.  Given the Tylenol recall, I looked at the bottle I’ve been grabbing from the dimly lit bathroom in the middle of the night and looked for the Lot number.  In the process I realized that it has an expiration date of July 2008.  WHOOPS!  I’m usually a stickler about expiration dates and thought this was the newer bottle I bought this summer (guess that one is missing.)  The good news is that it’s too old to be in the recall and the even better news is that I learned that Tylenol and other similar pain killers are good for at least 5 years after their expiration dates.  Apparently the military did a study quite a while ago showing that 90% of medications are good for 15 years after they’ve “expired.”  Very cool.

I also learned that it’s not good to combine Aleve with Motrin or Advil, but that mixing any of those with aspirin or Tylenol are okay since they work on different parts of the body.  Thank goodness for the Internet!

January 3, 2010

Rebif – Finished the Titration Pack

Filed under: Uncategorized — by mseds @ 8:23 pm
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Time seems to be flying by.  I guess the holidays have a lot to do with that.  We celebrate both Chanukah and Christmas, so it’s been pretty busy here.  I was hoping to use our annual holiday party as a way to start fund raising for the MS Walk, but the original time got snowed out and the rescheduled date was a smaller crowd, so I decided to tone down the plan.  Hopefully Mother Nature will cooperate next year!

Throughout the holiday season I’ve been working my way through the Rebif Titration pack.  It’s been a very mixed experience.  I must say that my favorite part is having days without shots.  Three days a week certainly trumps daily injections.  At the end of November I scheduled out all of the shots for December and managed to avoid shots on Christmas Eve, New Year’s Eve, and on the nights before busy days.  Fitting in 3 shots a week has worked out very well.

My least favorite part?  It’s a toss-up between the actual shot and the side effects.  I find the Rebif auto-injection contraption harder to use than the Copaxone one.  Of course my Copaxone auto-ject was well worn in and I was used to it, but there’s just something about the Rebiject that I dislike.  It has a rubbery cover to the button you press to administer the shot.  There have been several nights where I’ve pressed the darn thing, but it didn’t trigger the shot.  My shot routine is to get the auto-inject in place, take a deep breathe, look away, press the button, then slowly exhale until it’s done.  One night it took three tries until the darn shot happened.  By then my husband and I were laughing so hard it was difficult to keep the contraption in place.  They’d be wise to get rid of that rubbery part on the next model.

My other complaint about the Rebiject is that it tends to allow medication to seep out of the needle when it’s being pressed into the holder.  More often than not, medication drips out which makes the shot hurt a whole lot more.  The nurse who trained me said to give the assembled device several good taps once the cap remover is taken off to shake off any drips.  I think that helps a bit, but it would be tons better if the stuff didn’t drip out to begin with.

At least after the shot I don’t have the pain I used to have with the Copaxone.  Before doing the Rebif shot, I pop a Tylenol while heating up the Copaxone heat pack which I use for 5 minutes, then wipe the spot with alcohol, wait for it to dry, do the shot, massage it for a moment, and then hold a second heat pack on the spot until it cools off.  I still bruise, but it’s a very different kind of mark.  It is a deeper red, then black and blue rather than the spots I got with the Copaxone which were a cross between an allergic reaction and a black and blue mark.

As for the side effects, they vary by the day and never last long.  I’ve only had flu-like symptoms one morning.  It was after the third 22mcg shot.  I was fine at night, but woke up with a 101.5 fever (it spiked a few times, but I didn’t have the thermometer handy to measure it) and felt really weak and exhausted.  I took an Aleve and went back to bed until 10 a.m.  I woke up feeling fine.  It was the strangest thing to have a bad case of the flu that only lasted 4 hours, after which I was completely fine and able to go out to finish Christmas shopping.  A couple of other mornings I’ve had a fever of between 100.4 and 101.4, but didn’t feel sick at all.  About a third of the time I get a metallic taste almost immediately after the shot and the next morning I get horrible stomach pain on the left side of my abdomen.  That, too, goes away by about 10:30.

I started the full dose two shots ago.  I’ve been meaning to post this for a week now, but the holidays and family visiting from out of town have been keeping me pretty busy.  So far, the 44mcg shots have been uneventful.  I’ve not been willing to chance just doing Tylenol, so I’ve taken Aleve from the start.  Perhaps one day this week I’ll see if Tylenol is good enough.

I hope you are all having a great start to the new year and that everyone has a happy, healthy, and peaceful 2010!  I’m excited about starting a new decade.  I think this is going to be a fantastic time for MS research and that treatment of this disease will look radically different by the end of the 2010’s.  Just think about how far things have come in the past decade and now with the CCSVI research, it’s a pretty amazing time which brings a lot of hope and encouragement!

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