Archive for July, 2005

You need to get MRI’s and blood work pretty regularly. Your neurologist will want to review these at your 6 month or annual appointment. This means you will have to do the tests prior to your appointment. You can either;

1. get the orders for the MRI and blood work at your appointment for the next appointment
2. call your neuros office a month prior to your apt for the orders

Because my neuro wants the blood work done every three months I have the work orders. Then all I have to do is go to the phlebotomist, hand over the paperwork and get stuck. The MRI I call the neuros office for. Its pretty easy since I go to a clinic (Virginia Mason).

When I was first told that I had to be injecting medicine 3 times a week I was ok with it. Medicine I know where to get, Mr. Pharmacist is a nice person. But where do I put the used syringes?

I asked my neurologist.
I asked my neurologists nurse practitioner.
I asked my pharmacist.
I called my pharmacy’s Specialty Group and asked them.
I called MS LifeLines - my medicine support group and asked them.

No one could tell me what to do with my used needles.

One person told me to just throw them in with my regular trash, another told me to save them up somehow and take them to the hospital. They were all wrong.

On a lark I went to the website for the company that collects our garbage. They knew what to do with my used needles. Its even on their web site. Moral of the story check with your garbage company or health department.

Chinese Hampster Ovaries. That’s what Rebif is made of. American hampster ovaries are not good enough, no. We must import these little gems of medicine. Besides, PETA would probably object. I don’t think they’re performing hysterectomies on the little rodents so PETA would definitely object.

Every time someone says Rebif I flash to two movies; Sixth Day and Back to the Future. Re-Pet meets Biff. Scary combo, it does make the shots easier to take though.

Enough frivolity. Things you should know about Rebif.

• If you are female your menstrual cycle may change. Mine has gotten lighter and shorter, and the horrible cramps have almost completely left.
• The chances of your injecting sites looking like a bee sting is pretty high. A bad bee sting. Mine are about silver dollar size and progressively get darker, redder and angrier looking. Some, especially in my thighs, form hard bumps that dissipate over a week or three. I’m told this is normal.
• Talk to your doctor or nurse or whoever, in person, about where you can inject. If you have a close friend or spouse ask about your entire tush. Ask about the back of your thighs, saddle bag, any area that has some meat on it. Serono gives you some very limited options. You will need more if your injection sites last a couple weeks and the discolorated area is large you’re going to run out of Serono approved areas. Fast.
• Talk to your neuro, nurse whoever you trust that has medical knowlege (sorry, psychic hotline is out) about needle depth. They want you to use the deepest needle depth. I find shorter needle depths less painful. But talk to your doc about this!
• One word. Lidocaine (aka EMLA). People suggest heating the targeted injection site, or icing it, or rubbing it, or or or or. Forget all that. If the injection bothers you numb the area with Lidocaine, available from Mr. Pharmacist. It’s a topical numbing agent. It will not completely numb the tissue the medicine is being injected into.
• The auto-injector, refered to by someone wittier than I as an auto-inflictor, is an awesome device. Awesome devices make life easier but have draw backs. It injects the meds much faster than you would manually. This has been known to cause worse injection site reactions. It also makes the injection sting a bit more. However its wonderful if someone is giving you the shot. My husband gives me every injection. He isn’t able to jab me, we’ve tried, so the auto-injector (Rebiject) works perfectly for us.
• There are many suggestions on how to deal with the aftershocks of the injection. These include, but are not limited to; rubbing the area with a clean cotton ball for 2 minutes after the injection, using a heating pad on the injection site for a few minutes to half an hour, injecting a softball and throwing it at someone you aren’t fond of. Rubbing the site does feel good, I don’t like the heating pad and Rebif is a wee bit expensive to go beaning someone with although I’m reserving that for the next jerk of a doctor I deal with.
• Take your shot out of the fridge as early as the morning of your injection. Taking the chill out of the med helps the medicine go in - with less screaming. update: Serono is now saying you can take the shot out a week in advance depending on how warm your home is. I personally like keeping the shots in the fridge and taking them out the morning of. Habit. Means less things to remember. That’s good because I have MS.

Serono offers several items to Rebif users. Travel cases, injection journals, all sorts of stuff. Take advantage of these offers, the travel case is really nice.

So… now you know what to call all those mystery problems. Great. Now you’ve got a clear path for medications; oh how the pharmaceutical companies and drug stores will love you. But what do you do now ?

First, don’t panic. Second, you don’t have to read every bloody thing out there about MS and become a biophysicist or neurologist. It’s not important that you can have a conversation with your highly trained neurologist in the terms they would use in a published paper. Third, sit back and relax.

What’s detailed throughout these pages is my personal travels through this disease known as MS. The little things that people let slip through the cracks and the not so little things that really deserves an answer.

Added March ‘06:
Want to have a little fun with MSer’s like you? http://www.mschatter.com.