Tag Archives: Rebif

Is it Progressive MS?

As I mentioned in my last post, MS comes in four flavors.  Since 85% of those afflicted have the relapsing-remitting type (RRMS), most people start with an assumption that this is the version that they have.  Some of us hit a point where we have to start to question if we actually have Primary Progressive MS (PPMS) instead.  I am at that point now.

Let’s start by looking at some of differences between RRMS and PPMS.

RRMS has periodic flare-ups that largely or completely go away, only to come back again later.  PPMS has just a steady deterioration.  Looking back on the progress of my disease, it has been a slow steady deterioration.  I may have some days that are slightly better or worse than others, but I have never all of the sudden had an exacerbation.  Nor have I woken up and found that my leg was back to normal.  My strength and coordination in my left leg has just very slowly gradually gotten worse.  I used to think that my MS medications were just preventing any flare ups of new symptoms.  More and more I am suspecting that this is not the case; it may just be PPMS.

Demographics.  RRMS occurs in two to three times as many women as men.  It usually first pops up it’s ugly head in someone’s late teens to 20’s.  PPMS on the other hand, usually begins in someone’s 40’s and afflicts men and women equally.  I am a male and my MS began in my late 40’s.

RRMS activity tends to show up in the brain more and the lesions have more inflammation.  PPMS tends to show up more in the spinal cord and have less inflammation.  I remember my doctor looking at my MRI done with contrast last year and saying that it looked good with little evidence of new inflammation.  We attributed it to the Rebif that I was on working.  It could be.  Or it could just be that it’s PPMS and taking the Rebif was coincidental since it’s generally accepted that the interferons like Rebif don’t do much if anything for PPMS.

MS can manifest itself in many ways.  RRMS runs the gamut from eyesight, strength, balance, cognitive, bladder control, sexual issues etc etc.  Any of these can also occur with PPMS, but the most common symptom is trouble walking and mobility.  To date, walking/mobility is the only symptom that I have experienced.

What difference does it make and what does it all mean from a practical perspective?  The only advantage that I can think of for PPMS is that it is more predictable.  You know what you have and that it will gradually get worse.  There is less of a concern that you will all of the sudden wake up one day unable to see out of your left eye for a week.  The biggest disadvantage of PPMS is that it doesn’t respond as well to medications.  In fact, all of the disease modifying drugs approved for use in the U.S. currently are just for RRMS.  With some luck, that may be changing.

In my next post, I will dive deeper into my treatment options if we suspect that I may have PPMS.


R is for Rebif. And Rash!

I started on Rebif for my multiple sclerosis almost three months ago.  Rebif is a three times a week injection that you give yourself.  The most common side effects are flu like symptoms and irritation at the injection sites.  I experienced neither.

The first two weeks were fine.  Initially you begin with a one fifth dosage.  The next two weeks they move you up to a half dose and I was still fine.  The fifth week I stepped up to the full dose and that’s when the reaction began.

Within a day of dialing up to the full dose I began to have a small but itchy rash on my chest.  I had been on a business trip and assumed that it might be from the hotel bed.  I could have been sensitive to the detergent that they used or it could even have been bed bugs.  If so, I would expect it to fade away with a little hydrocortisone cream.  However, it did not get any better.

I had read that with some other MS medications people may experience flushing or rashes, but that this often goes away after the first month or two.  I was hoping that this wold be the case too.  I called MS Lifelines, which is essentially a customer service help line staffed with nurses that is run by the pharmaceutical company.  They looked it up and could only tell me that in trials, 5% of the subjects developed rashes.  They couldn’t tell me anything further such as if it normally goes away over time.

I had an appointment with my MS doctor coming up so I stayed on the Rebif and waited to bring it to her attention.  By that time, it had spread a little and was still itchy, but more or less tolerable.

MS Doc didn’t think that it was anything serious but that tolerable or not, I shouldn’t have to go through life itching if I don’t have to.  She suggested stepping back to the half dose for a month to let the rash clear up.  Then we would slowly go back to the full dose in hopes that my body would have adjusted by then.

It didn’t work.  A month later, the rash not only didn’t go away, it has gotten worse.  It now covers most of my upper body and has moved from tolerable, well into the annoying camp.  We now have the following action plan:

  • Stop taking the Rebif.
  • See my primary care physician to see if I can get anything to help clear up the rash.
  • Give some blood again.
  • Pick a new treatment.

The blood test is needed because my last test a month earlier showed elevated liver enzymes.  This may be a result of taking the Rebif, but we want to be sure before we decide which treatment to try next.

Giving myself the injections was not as bad as I had feared.  That having been said, I am really hoping that the next one that we try is a pill!

How to give yourself a Rebif injection

Rebif is a popular disease modifying drug used to treat remitting – relapsing multiple sclerosis.  It is injected sub-cutaneously (into the fat layer just beneath the skin) three times a week.

I had mixed feelings when I started on Rebif.  On the one hand, I was not at all enthusiastic about giving myself shots.  On the other hand, I felt like I was finally doing something to treat my condition.

For people who may be considering Rebif treatment, I thought that I would share what exactly is involved with taking the medication.

First of all, It’s really not that bad.  Really.  It only takes a few minutes, three times a week and you quickly get used to it.  When you first start, MS Lifelines, aka the pharmaceutical company, sends out a nurse to your home to coach you on how to do the injections.  You will rotate injection sites between your abdomen, thigh, upper arm and lower back/buttocks.  Within each of these you will also rotate between six spots on both the left and right sides each for a total of 48 injection spots.  At three times a week, you will go four months before repeating specific locations.

The first two weeks you will do a dose that is approximately a fifth of the full dose.  The following two weeks you will move up to half doses before taking on the full doses starting in the fifth week.  It’s helpful to pull out the pre-filled syringe out of the refrigerator several hours in advance to allow it to warm up to room temperature.  Supposedly this reduces injection site reactions.  I haven’t had any so it probably does help.  The syringes can be kept at room temperature for up to 30 days.  Some people take out a week’s worth at a time.  I just always keep the next dose in my sock drawer.  When I inject one, I pull another out of the fridge to replace it.

Step one:  Wipe the site with an alcohol wipe and let dry.

Step two:  I use the Rebiject injection tool.  It’s about the size of a large banana and if you fear needles, it’s a must.  You never see the needle until after you are all done.  Cock the spring loading mechanism in the Rebiject.  Insert the pre-filled syringe with the cap still on it into the hole and screw the two pieces of the Rebiject together.  Pull off the plastic tube on the end which removes the syringe cap and you are ready to go.

Step three:  Press the end of the tool against the chosen injection site and push the button.  The tool sticks the syringe into you and squeezes out the dose without you ever seeing it.  Wait a few seconds and pull away the Rebiject.

Step four:  Massage the injection site for two minutes to help distribute the medication.  I put a sterile gauze pad over it and rub gently, but you could use your hand if it is clean.

Step five:  Unscrew the Rebiject and dispose of the needle in your sharps container.  They give you two containers with a prepaid addressed box to send a full one back.  When you do, they send you a replacement.

When you first start, a common side effect is flu like symptoms.  They recommend that you take advil before your dose and shoot up at night.  That way if you do suffer the flu symptoms, you will likely sleep through it.

I was lucky and did not have flu symptoms or issues at the injection sites.  I did, however, have a different and less common side effect.  That will be the subject for the next post.

Give myself a shot? Really?

Now that the diagnosis of multiple sclerosis was made, it was time to talk about what to do about it.

There are two ways of using medications to treat MS.  The first would be taking something, steroids is an example, that would address the symptoms that you were suffering.  Since I had hardly any symptoms, this wasn’t something that I needed to consider.  At least not yet.  The second group are what are called disease modifying drugs, also known as DMDs.

The idea of DMDs is to slow down the progression of the disease.  Unfortunately none of them halt it completely.  They also don’t work the same on all people.  There are the lucky few who might find a drug that slows it down so much that it does effectively halt it.  Other’s may find that no drug slows it’s progression down at all.  Obviously, I hope that I will be in the former group, but only time will tell.

My doctor explained that there are about a dozen drugs currently approved with a variety of results and side effects associated with them.  For someone in my circumstances she had three that she used as baseline treatments.  I had done a little research before and knew that some of the newer drugs were taken as pills.  I told her to give her best recommendation for me and I would go with it, hoping that it would be a pill.

It wasn’t.

My doctor recommended Rebif.  I will go into more detail in another post, but basically it involves giving yourself a subcutaneous injection three times a week.  She said that it has a very long safety profile and that with any luck, it may be the only medication that I will need.

But give myself a shot?  Having someone else do it is bad enough.  I just couldn’t imagine having to stick a needle into myself.

In actuality it isn’t really that bad (more to come on this).  And for the first time at least I felt like I was doing something for my disease.  It was the most empowered that I had felt in a long time.

At a later appointment I asked doc why she went with Rebif instead of Tecfidera, which is a new popular pill?  She replied that treating MS is a marathon.  At some point we may have to switch medications.  When that time comes, it is much easier to switch a patient from an injection to a pill than the other way around.  I couldn’t disagree with that.