Crazy?

A board to discuss the Multiple Sclerosis modifying drug Rebif

Crazy?

Postby Lorin » Thu Aug 27, 2009 5:01 pm

Started Rebif on April 1st because Copaxone quit working for me. Neuro wanted me to give Rebif a 6-month shot. She said if I didn't tolerate it or if it didn't slow MS progression, she'd switch me to Tysabri.

The first dose was horrid and each since has been more horrid. Spending most days curled up in bed or on sofa due to pain in joints; skin also hurts serverly (back, shoulders, neck &, as of 4 a.m. this morn, scalp).

Fatigue unreal. Chills. Fevers. Rigors (shakes).

Bruises are incredible. Rebif hotline tells me to drink more water. As if I'm not up multiple times every night to :oops: as it is.

Taking all that into account... I don't think I'm crazy to want to stop taking Rebif at 5 months. I'm not crazy am I? Friends say I'm crazy. But they're not the ones who spent the entire spring and summer like this.

Please know that when I do stop, I'm done. The only option I have left is Tysabri and my luck isn't good enough to tangle with that.
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Postby scoobyjude » Thu Aug 27, 2009 5:32 pm

Lorin, you are not crazy to want to stop. If I was going through what you're going through I probably wouldn't have made it 5 months. Maybe there is an alternative between Rebif and Tysabri. Maybe you could go the supplement or diet route or even ABX. There has to be other options available for you. Wish I had better advice for you. Maybe others will.
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Postby lyndacarol » Thu Aug 27, 2009 5:43 pm

Lorin-- you are NOT crazy!You know your body best; you had given Rebif a fair trial. Explain your feelings to your physician, a good doctor will understand.

From all I have read, I am skeptical of Tysabri -- and even fearful! I can understand your reluctance to try that one.

Since I believe that excess insulin is fundamental to MS, I see a diet (low in carbohydrates) and exercise as possibly the only recourse (because of their effects on insulin level).
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Re: Crazy?

Postby NHE » Thu Aug 27, 2009 9:02 pm

Hi Lorin,

Lorin wrote:The first dose was horrid and each since has been more horrid. Spending most days curled up in bed or on sofa due to pain in joints; skin also hurts serverly (back, shoulders, neck &, as of 4 a.m. this morn, scalp).

Fatigue unreal. Chills. Fevers. Rigors (shakes).

Bruises are incredible. Rebif hotline tells me to drink more water. As if I'm not up multiple times every night to :oops: as it is.


I know your pain. My first year with Avonex was very difficult and I had many of the same symptoms. What are you taking to counter the side effects? Many people, including myself, have found that ibuprofen is more effective than acetaminophen (Tylenol). If you can take ibuprofen, then I would recommend taking 400 mg at the time of your shot and then another dose after 4 hours. Additional doses may be helpful if the side effects are severe. You can take it with food to help minimize the impact on your stomach.

Here's something else to consider. Avonex does have a couple of advantages over Rebif. One is that it's an intramuscular injection. As such, there are no injection site reactions. Another is that you just feel cruddy for one day out of the week and not all week where you never get a chance to recover. Some might argue that Rebif is better since it's a higher dosage. While that might be true, it should be noted that there is a difference in absorption efficiency between an intramuscular injection as compared to a subcutaneous one. In effect, an intramuscular injection has around an 80% absorption efficiency while a subcutaneous injection only has about a 40% absorption efficiency. Thus, the difference in dosage is not as great as it seems once this information is taken into account. I've been on Avonex for a little over 9 years. At this point, my side effects are usually limited to feeling run-down and tired the next day (I still take some ibuprofen about 3 to 4 hours after my shot). While it's certainly not a cure-all for MS (far from it), I feel that it has been beneficial. I have had some decrease in my physical abilities in the last couple of years but I have not had any incident that I can identify as a distinct relapse. To be fair, I should also note that I take several supplements including 6g of omega-3 fish oil/day, green tea, turmeric, ground flax seed, r-lipoic acid, natural vitamin E, and a combined calcium, magnesium, zinc, and vitamin D3 supplement. I have also given up eating trans fat and try to eat less processed food and less sugar overall.

I forgot to mention this earlier. If you do consider Avonex, then request the freeze dried form that you have to mix with sterile water instead of the prefilled syringes. Many people have mentioned that they have worse side effects with the prefilled syringes. I believe that this is due to the differences in the buffer. The freeze dried form is in a phosphate buffer near neutral pH at 7.3 while the prefilled syringes are in an acidic buffer at pH 4.8 (in order to inhibit bacterial growth).

NHE
Last edited by NHE on Fri Aug 28, 2009 1:07 am, edited 2 times in total.
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Postby catfreak » Thu Aug 27, 2009 9:23 pm

I stopped in February and an now on Tysabri. I am doing better on Tysabri than on rebif.

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Re: Crazy?

Postby Lorin » Fri Aug 28, 2009 7:50 am

For the Rebif side effects, I started on the over-the-counter dosage of ibuprofen, tried OTC-dosage acetaminophen and OTC-dosage aspirin. Then neuro Rx'd 600 mg ibuprofen at time of shot. That took care of about 5-15% of the symptoms but created stomach issues. Not willing to go on major pain killers just to take care of "side effects" (especially since I've been on oxycodone, Tylenol-3, etc., in the past for injuries with no success).

Neuro wants me on a "real strong" treatment due to the number of lesions I've been having and the frequency of such, which is why (she says) she discounted Avonex and Betaseron and skipped me right to Rebif. She also said I was "basically past" treatments for RRMS.

When I polled my friends and family about Tysabri they all said "NO!" Not because of the slight potential of the fatal brain infection; because if there was ANY chance (even a 0.00001% chance) of getting it, I would. It's just how my life's always been. I'm not being a pessimist; I'm being honest. I'm known as the funny one in group therapy because I can usually turn all my crud into a good story.

I've had this neuro since February. The one prior said lovely things like "MS doesn't cause pain" and "MS doesn't cause fatigue" but he was the only neuro at the clinic my insurance allows. He also shrugged off the 4 exacerbations I had last year as "typical MS." (Oh, wait, he only ignored 3 because one was pain and, therefore, not MS).

Now new neuro is trying to establish where I'm at with MS, trying to revive my right side (which I haven't felt for over two years), trying to bring back my vision (lousy for nearly 3 years), and having a heck of a time finding a fatigue-combating medication that doesn't interfere with my bipolar disorder (no luck yet). And did I mention my tongue went numb?

Meanwhile, because life wasn't interesting enough, I started dating someone this summer who understands my MS but not my "throwing in the towel" attitude. I've been at this for 18 years. He's been at it a couple of months. And my other friends only have to deal with it as they wish. Me? I'm here all the time.
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