Life with MS & EDS

December 3, 2009

Rebif – Day One

Filed under: Uncategorized — by mseds @ 9:10 am
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Yesterday was my first experience with Rebif.  The medication arrived on Tuesday and the nurse came to do training yesterday afternoon.  I must say that the MS LifeLines nurse was fantastic.  I liked her a lot more than the Shared Solutions nurse that came to do my Copaxone training.  In all fairness to that nurse, I think her main objective was to get me over my fear of needles and in that regard, she succeeded.  The Rebif nurse came in at a time when I was far more knowledgeable about MS and basically over my needle fear.  I just needed to get past my concerns about Rebif!

We had a great discussion about the differences between Copaxone and Rebif and how doing the shots was different, yet similar.  Here are some tips and observations I picked up:

  • The auto-injector is almost exactly the same, just different in color and the Rebif one is just long enough that it doesn’t fit in the Copaxone travel box while assembled.
  • The amount of medication injected for Rebif at its full dose (0.5 ml) is half that of Copaxone (1.0 ml).
  • Both Rebif and Copaxone are pre-filled shots with 29-gauge needles.
  • Rebif is a “live” shot whereas Copaxone is not.
  • While Dr. Specialist recommended taking Aleve ahead of the shot, the nurse said to start with Tylenol explaining that if I start with the strongest and don’t really need that level of medicine, then I’ll never know.  I can go along with that.  Also, but taking Tylenol first instead of Motrin or Advil, I can take Aleve later if needed.
  • Instead of doing the shot right before bedtime, the nurse encouraged me to do it closer to 7 p.m., as long as I was okay with the girls being awake during my shot.  Her reasoning was that if I am going to spike a fever after the shot, it’s better that it doesn’t wake me up.  She said it’s better to deal with that while awake, get the fever down, and then go to sleep.  That made sense, too.
  • Unlike Copaxone, Rebif should be massaged after the shot to encourage it to be circulated away from the injection site as quickly as possible.  This is another reason that using heat rather than ice after the shot is the routine.
  • Whereas Copaxone can leave a red, allergic reaction at the injection site (which happened to me often, especially on my arms), Rebif leaves a smaller, deeper red bruise.  She confirmed my speculation that this happens more often with the auto-injector, given it’s force, than with doing the needle manually.  Given my tendency to bruise easily and my translucent skin, we assume that I’ll see these bruises.
  • She reminded me that I need to get bloodwork drawn every 3 months to check my liver enzymes and thyroid levels.  I said I already have my prescription for that and will mark reminders on my calendar.  They already have a baseline from earlier this year when I had a ton of blood taken, so I can wait until 3 months from now for the first test.
  • Assembling the auto-injector was exactly the same as with Copaxone.  There’s one extra step – she said to flick the assembled auto-injector after that cap is pulled off a few times to make sure there isn’t any medication at the tip of the needle.  Medication on the tip will cause burning just like injecting into skin where the alcohol hasn’t dried.
  • We talked about injection sites.  I said I wasn’t willing to try my thighs after my bad experiences with them on Copaxone.  She said if I did want to give them a try again, to sit in a chair and bend my foot outward to relax the muscle to make it less likely that I’d inject into it.  That was a nice tip, but I don’t plan to ever use it!
  • I shared my injection site diagram that I developed for Copaxone.  She loved it and said I can keep using it.  I can improve upon it because the stomach is actually considered 2 shot areas, dividing the left and right.  Very nice to know!
  • She also recommended that I divide the rotation in half and do right side of the body one week and the left side the other week.  I loved that idea, so I’ll edit my rotation schedule for that.
  • Then we talked about timing.  She reminded me that I need to keep 48 hours between injections and that I need to fit in 3 a week.  At the beginning of each month, I’ll look at my plans for the month and can map out the shots.  I have a map for this month that avoids times when I’m on travel and that skips Christmas Eve and NYE!
  • She was very encouraging.  She said that I really shouldn’t have much side effects at the lowest level in the titration pack.  I’ll have 2 weeks at 8.8 mcg, then 2 weeks at 22 mcg before going up to the full 44 mcg.  She said that I may notice more side effects at the 22 mcg level, but that the real test wouldn’t be until the full 44 mcg dose.  She said about half of people get side effects and that most adjust within 6 weeks.
  • Lastly she reminded me that despite my really good attitude, that I need to watch out for signs of depression and to remind my husband to watch out for any mood changes (Nothing Knew, consider this the reminder.)

After the training we had an interesting discussion about CCSVI.  She was also really excited about it.  I said I was trying to search for a doctor who would do an evaluation for me, but that I wasn’t getting very far.  She mentioned the Buffalo study and I told her I already applied.  She encouraged me to keep an eye on news from the MS Society and other reputable sources.  I said I was frustrated with their slow response to this research and we talked a bit about why we think that is the case.  She did encourage me to write to my local chapter to ensure they know I’m interested in CCSVI and to inquire if they know of anything going on in our area with regard to research or treatment.  I’ll let you know if/when I hear anything back!

So, onto last night.  I had a meeting yesterday evening, so I didn’t get to do the Rebif shot until 9:30.  I took Tylenol about 30 min. before the shot.  Then I used heat (one of the Shared Solutions heat packs) for 5 minutes on my hip (typically an easy Copaxone shot location, so it seemed like a good place to start) and then alcohol.  Once the alcohol dried, I flicked the auto-injector to make sure there wasn’t any medication on the needle’s tip and then held my breath and hit the plunger button.  There was a surprising amount of pain when the needle entered my hip.  My husband was next to me on the phone with his aunt, so thankfully I watched my language, but wow, that didn’t feel very good!  Although, unlike the Copaxone injection, I had no pain at all after the shot!  I massaged it a bit and reapplied the heat, but it wasn’t very hot by then.

Then I sat and waited.  We decided to watch TV in bed, which was nice.  I was glad that I didn’t get any flu-like symptoms, but by 10:15 I noticed a strong metallic taste in my mouth.  It wasn’t as bad as the taste I got with Solumedrol, which made me want to eat a kitchen’s worth of food to quench, but it was not pleasant.  I fell asleep close to 11 and by the middle of the night the taste was gone.

I didn’t have a great night’s sleep, but I never do.  I won’t blame that on Rebif.  When I woke up this morning I had a strong pain in my left side.  I’ve been awake for 3 hours now and it is just starting to subside.  I sure hope this doesn’t happen every time!

I know I need to give Rebif a try and that it may take a few months for my body to get used to it.  It’s nice to not have pain after the shot like with Copaxone, but at least the side effects on that drug were easier to handle.  I’ll try to keep my positive attitude!  Who knows, with any luck, the CCSVI research will get rid of all of this or at least drastically change the way we treat MS.  I’m extremely hopeful!!

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8 Comments »

  1. I am informed…although we have talked with each other several times since the nurse was here. You didn’t need to tell me through your blog. ;-P

    If I notice any mood changes I will point that out. That should be a fun conversation.

    Comment by Nothing Knew — December 3, 2009 @ 10:20 am

  2. “Honey, I think you’ve been a bit moody lately….” Yes, that will be fun, but I know you have my well-being in mind 🙂

    Comment by mseds — December 3, 2009 @ 10:39 am

  3. I have been taking rebif since July and prefer it over Copaxone- I had horrible site reactions and the chest tightening with Copaxone. Tylenol works for me and I do feel a little crappy in the morning after the shot but it quickly subsides. Good luck!

    Comment by Melissa Multitasking Mama — December 3, 2009 @ 11:03 am

  4. I’m glad to hear you are having better luck with Rebif than Copaxone. I thankfully never had the chest tightening. That sounds scary. I’m hopeful that I’ll adjust to Rebif quickly.

    Comment by mseds — December 3, 2009 @ 11:23 am

  5. Hello wishing you every good wish as you continue with this new regime. I wonder to myself how/if/whether it will make a difference to EDS symptoms. Is it difficult to differentiate between EDS & MS symptoms I think to myself as I read your blog. It sounds as if one has to be mega organised to work out when to take this med to avoid xmas/new year important dates, something I would be appalling at! I don’t know how you cope with both MS & EDS.. Keeping my bendy fingers crossed here in the UK that the Rebif makes a very real difference to you. Kind Regards.

    Comment by achelois — December 3, 2009 @ 4:39 pm

  6. Thanks so much! It helps that I love to plan, so it’s not too bad. I guess being able to plan things out makes me feel as if I have some control over things. I hope you are doing well, too!

    Comment by mseds — December 3, 2009 @ 7:30 pm

  7. I was on copaxone and had problems with pain at the injection site. I have been off it for a few weeks and still experience lumps and redness at the injection site. I experienced chest tightness to the extent the first night I called 911 and went to the emergency. I called my doctor and he said he had never heard of that side effect to skip a day and do the injection the next day. Same tightness happened this time causing me to pass out and stop breathing. Luckily my husband was with me and called 911
    again started cpr until the parmedics got there and again I took a ride to the emergency room. My doctor still doesn’t beleive it was the copaxone but I refuse to try it again so he suggested I try Rebif. I read in the pamphlet that i can cause tightness in chest. I am really nervous to try it. Anyone have any advice for me I don’t feel like I am getting any support from my doctor

    Comment by connie — September 3, 2010 @ 9:11 pm

  8. Wow, Connie, that sounds really scary! I’ve heard that chest tightness is a known side effect of Copaxone. I’m shocked that your doctor wasn’t aware of this. Don’t the folks that call quite often from Copaxone even ask if you have had this side effect? I’m fortunate that I never experienced it. I am not aware of this being a side effect with Rebif, but that doesn’t mean it’s not possible. Rebif is a different kind of medication than Copaxone. If you couldn’t tolerate Copaxone well, it might be worth it to try one of the interferons.

    After researching all of the CRAB medications, I decided on Rebif. I like it better than Copaxone, but to be honest, I really don’t like Rebif at all (says a lot of what I thought about Copaxone, huh?) I bruise at the injection sites, but they are different than Copaxone. With Copaxone, it was like a bug bite reaction. With Rebif it’s more of a bruise that itches. The flu-like symptoms take some getting used to. I upped my pre-shot Aleve does to two pills and that is helping. I’ve been more moody on Rebif, too.

    Honestly I’d very much like to ditch the shots all together, but I’ve seen improvement in my MRIs since starting Rebif, so I’m having a hard time justifying going off of it. I feel like I’m stuck taking it until something better comes along. I’d very much like to try LDN (have you researched that at all?), but can’t get my neuros on board with it. It’s tempting to go completely against them, but I can’t quite get up the courage to rebel quite yet. Doing the angioplasty for CCSVI was about as rebelious as I get, but I’m trying to learn to question doctors more and do more research on my own.

    Good luck with your decision! I think I’d have a really hard time staying on Copaxone if that happened to me. I’m very curious to know if anyone out there has had chest tightness with Rebif. Please let me know if you find out more info!

    Comment by mseds — September 3, 2010 @ 9:36 pm


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