Life with MS & EDS

June 28, 2011

Dear Rebif

Filed under: Uncategorized — by mseds @ 8:38 am
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Dear Rebif,

It’s time that we part ways. I’m moving on as you don’t fit well in my life.  You are far too high maintenance.  You waste three nights a week and the occasional next morning.  If you were as easy to inject as insulin, maybe I’d keep you around, but you’re not.  Before injecting, I need to make sure to drink at least 2 liters of water, sometimes closer to a gallon.  If my pee isn’t clear, I won’t inject.  I have to take 2 Aleve, warm the injection site with a heat pack, rub on alcohol, wait for that to dry a bit, then finally inject, endure the pain, put heat on again, and ensure to go to sleep within an hour so that you don’t make me sick. For months you gave me the flu.  Yes, it was gone by around 11 the next morning and yes, it’s a rare occurrence now, but I still need to plan for the chance you’ll wreck my sleep and the next morning.  You’ve also abused me.  I am tired of the itchy red spots that turn black and blue.  I bet people think my husband has been abusing me, but no, that’s all you, Rebif.  I’ve had enough.  I can’t even tell if you are doing any good and studies are questioning if you are of any use.  I’ve thankfully had no disabilities (unless you count Optic Neuritis) since my symptoms arrived in 2001.  I took nothing until 2008 (not intentionally, but that’s another story) and can’t say I’ve noticed any improvements since starting injections for MS.  You can take it personally if you want, but it’s not just you.  I dumped Copaxone before you.  You CRAB (Copaxone, Rebif, Avonex, and Betaseron) drugs just aren’t my type.  You’re cramping my quality of life.  It’s time to try something new.  I’m going to give Gilenya a try.  Hopefully the pill will be more my speed.

Take care,



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!

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!!

November 17, 2009

Hello Rebif

Filed under: Uncategorized — by mseds @ 10:16 pm
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Hi Rebif,

It looks like I’ll be acquainted with you soon.  This Friday will be a year since I was diagnosed with Multiple Sclerosis.  The drug I chose to help me fight the progression of MS did not work.  For some reason my body did not respond to Copaxone and new lesions emerged on my spine.  I have high hopes for you, Rebif.  I know that you are going to keep MS from eating away at my spine.  You’re my last hope at avoiding Tysabri, so please don’t fail me.


November 4, 2009

Good-Bye Trial, Hello Rebif?

Last week I saw Dr. Specialist. Our discussion started out with, “I don’t think it’s a good idea for you to go without treatment for three months,” which is what I’d have to do to be part of the trial. I responded with, “So, I guess you have the MRI results,” which she did. It was a mixed picture.

The good news is that my upper spine is looking better, for the most part. The lesions in the cervical spine demonstrated either a “mild decrease in expansion” or were stable. Some decreased in “conspicuity” however one was more “conspicuous” than before (meaning they can see the lesion more clearly now.)

Moving further down the spine, the news got worse. Multiple lesions are stable in the thoracic spine, but there is new enhancement and extension of the lesions at T9-10.

The theory is that Copaxone isn’t working. Dr. Generalist would say that it’s too soon to know this, but I’m siding with Dr. Specialist on this one. I’ve been on the Copaxone since early February and seeing a new lesion and increased enhancement in October cannot be a good sign.

After this lovely discussion I got to do the standard “drunkard” tests. I can still walk a straight line, walk on my toes, walk on my heels, touch my finger to my nose and then her moving hands, see the correct number of fingers, etc. There was a medical student with her during the exam which was interesting. They were both fascinated at how far up I was able to get my feet when walking on my heels. We then had a nice discussion about Ehlers-Danlos and I was able to help education the med student. It almost seems as if the Ehlers-Danlos symptoms are making having MS easier than it would be otherwise. I don’t have the spasticity symptoms that can accompany MS. I may have poor balance, but my bendiness keeps me from falling over. I’m not sure there is any medical evidence behind this, so it’s just an observation on my part.

If I failed any of the drunkard tests, she didn’t mention anything. I’m pretty sure the only part of the exam that showed anything was the eye exam. I can still read the 20/20 line without glasses, but my right optic nerve is still pale and my color vision in that eye is still decreased. I’m pretty positive this is a permanent condition at this point. It’s generally not annoying, except that I’m having a hard time getting used to taking pictures with my left eye (I know, I should use the screen on the digital camera, but there’s still something about looking through the view finder that I can’t give up.)

We then talked about next steps. I need to get the brain MRI since I won’t be doing that as part of the study. That’s scheduled for next week. I don’t think they’ll find much. MS seems to be eating my spine, not my brain. Once we have those results, we’ll talk about whether or not to do a course of IV steroids again. I really hope to avoid that. We’ll also have a talk about switching off Copaxone and moving over to Rebif.

I’m less than thrilled about the idea of switching to Rebif, but when comparing the side effects of the interferon drugs (e.g., flu-like symptoms, potential liver damage, etc.) against the continued degradation of my spine, I think Rebif comes out on top. It’s only 3 times a week, so at least I will have less shots! There’s a positive part, right? Also, since I won’t get to do the study, I get to keep my Mirena (yeah!) I’m trying to look on the bright side. I have way fewer symptoms than I probably should have given the number of lesions on my spine and if starting Rebif will help fight the progression of my MS, I’m going to give it a try.

October 27, 2009


Autumn is one of my two favorite seasons. I love the times of year when the world around me is in transition. I love the more temperate weather. I love the colors of the trees as well as the smells and tastes of fall foods. I love taking out sweaters, jeans, and jackets. I love spring, too, with it’s beautiful colors and emergence of life. I love being able to pack away those heavy clothes and dig out light weight clothing. I love that fresh produce is plentiful again. However, spring was always a bit less loved than autumn, because with spring comes tree pollen and tree pollen has always made me sick.

Unfortunately, autumn hasn’t been greeted with completely open arms anymore either. Since 2001, autumn has been a time when my optic neuritis flares up. My first attack was in October 2001. I now know that was probably my first MS relapse.

This October is kind of unique for me. The past 7 Octobers I spent expecting the optic neuritis to come along, but didn’t think much of it. After all, I had been told it wasn’t MS by a prominent doctor. It wasn’t until last year’s relapse that I even knew I had MS and that news didn’t come until closer to Thanksgiving.

I’ve been viewing this October as a test. Would my eyesight deteriorate at all this October, my first on Copaxone? When I started the shots, I always thought I’d have some indication of whether they were working once October came.

Well, we’re almost at the end of October. My eyesight never did recover after last year’s optic neuritis attack, so perhaps this isn’t a perfect test of Copaxone. I always see through my right eye as if I am looking through a fingerprint on a glass. I do think the vision is slightly worse than it has been the rest of the year. Unlike last fall, I do not have any pain behind my eye and I can still roll my eyes at my girls without any pain. I suppose that’s a good sign. I am concerned that the vision is slightly decreased, that the eye just feels different, and that it is puffy. I’m not sure why it’s slightly larger than my other eye. My chiropractor is actually the one who noticed it today when he asked how I was doing. I see Dr. Specialist tomorrow and look forward to seeing what she has to say.

Tomorrow is when I get the results of my latest MRI, which was a couple of weeks ago. I opted for just the spine MRI in case I end up participating in that drug trial I mentioned a couple of posts ago. The spine is where almost all of my lesions are anyway, so this is the part that I am very anxious to find out about. Here’s a picture of my spine from the MRI images I got to take with me on CD. I’m not quite sure what I am looking at, but in comparing this to other “normal” spine images I was able to find online, there’s definitely a lot more white on my cord than it seems there should be.

Spine October 2009

The amount of activity on my spine will be the clinical proof of how well or not well the Copaxone injections are working. If the activity level has remained the same or decreased, then I’ll have the Copaxone to thank and will be able to consider participating in the trial. If there’s activity, then we’re going to have to have a completely different drug talk and I’ll have to consider changing therapies. My fingers are crossed and I’m hoping for the best, but if you could send positive thoughts my way tomorrow afternoon, I’d greatly appreciate it! I’d ask you to send chocolate, too, but Posey already covered that part. (Thanks, Posey! The combo of dark chocolate and pear is extremely yummy!)

October 10, 2009

Candidate for MS Drug Trial

Filed under: Uncategorized — by mseds @ 2:27 pm
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I was reading my local MS chapter’s monthly newsletter last week and a blurb about a MS drug trial caught my attention.  Dr. Specialist is one of the people involved in the research and it focuses on Copaxone.  It sounded interesting, so I called the research coordinator last week and it sounds like I’m potentially a good candidate for the study.

The study is based around the theory that MS symptoms decrease while pregnant.  No, I’m certainly not going to get pregnant again!  It’s a study that involves pairing Copaxone with either oral hormones or a placebo to see if relapses decrease.

After chatting with the point of contact I fit all of the things they are looking for, except there’s one problem.  I have a Mirena IUD.  I LOVE my Mirena!  It was inserted a little over 4 years ago and I have had very few periods since then and they’ve all been really light.  During my last OB-GYN visit we already discussed replacing it in March, which is about 6 months earlier than called for.  I don’t want to wait until the 5 year expiration date and find out that it doesn’t quite last that long.

So, here’s the problem.  The Mirena releases a hormone.  This would interfere with the study.  I certainly don’t want to get pregnant again, so I need to have some kind of birth control.  I refuse to use condoms.  They are fine when not married, but I was thrilled to get rid of them.  Going back on the pill isn’t an option either.  This leaves me investigating other alternatives.

I did a quick Google search, of course, and came upon another IUD, the ParaGard.  It’s a copper IUD and doesn’t have any hormones.  I know nothing about it beyond that, so I need to do some more research to see if that’s something I want to try.  I suppose there are other options out there to consider, too.

I was scheduled for my 6 month brain and spine MRI on Monday.  Since the study includes brain MRIs (which would save me my co-pay), I decided to only have my spine looked at this week.  That’s  where all of my activity is, so I’d like to know what’s going on there.  If there’s activity, then I may not get to stay on the Copaxone anyway and that would rule out the study.  While I’m down there I’m going to stop by to talk with Dr. Specialist to see what she thinks.  The point of contact is going to set me up with a time to talk with the OB-GYN that is part of this effort.

I think it’s interesting that they only look at the brain.  I know it’s more costly to do both brain and spine MRIs, but it seems that a study like this should look at both.  If I’d have had my spine checked earlier, I certainly would have had an MS diagnosis years earlier.  I can’t emphasize this enough — if you have MS symptoms, ensure to get both a brain and spine MRI!!  Just because the brain is clear or displays little activity doesn’t mean it’s not showing on the spine.

I’m looking forward to hearing what they all have to say.  I’m not usually one to go out on a limb to try things like this, but I love that I’d stay on Copaxone.  Most of the studies I read about recently involve getting some kind of placebo rather than a proven drug as the comparison.  Going without some kind of treatment at this point isn’t something I’m willing to consider.

Has anyone participated in any studies?  I’d love any stories or experiences you could share.

Also, if someone out there has a favorite non-hormonal birth control, I need some suggestions!

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