I’m on drugs!
As of yesterday morning I’m taking something called Gilenya. Sometimes people have some side effects right after the initial dose of the stuff, so I had to spend the day at the hospital yesterday, getting my blood pressure checked and my pulse taken. But everything is fine.
More than fine, in fact. When I was first diagnosed with MS, one of the things that was most frustrating is there are no approved treatments for the kind that I thought I had. Looking more closely at my version of the disease revealed that some aspects of it may actually respond to treatment. So being able to take a disease modifying drug is a wonderful position that I didn’t expect to find myself in.
I decided to start taking Gilenya a few weeks ago, and it became clear pretty quickly that this is some serious medicine. For one thing, I had to have my eyes checked by a neuro ophthalmologist first, plus some blood work, plus an EKG at the beginning and the end of the day yesterday. Also Novartis, the company that makes it, gave me a nice person named Chelsea who I can call any time if I have questions. AND they sent me two tote bags and some pens. AND these pills are packaged up like Christmas.
You can bet that if Novartis is sending me tote bags and pens and presenting the pills like some kind of cherished objects (which they are), it’s probably a little more expensive than aspirin. I’ve read and been told that for people who don’t have any health insurance, this medication costs between $40,000 and $60,000 a year. That’s the equivalent of a year’s salary for plenty of people. And obviously you can’t spend a year’s salary on your medicine.
I think Novartis has assistance programs, they’ve worked well with my insurance, and they’ve been extremely helpful and informative to me. I feel very safe in all of this. So please understand that I don’t mean this to be a comment on any company. I’m not knowledgeable enough to make a judgement on drug pricing practices or a whole political argument about healthcare costs. There’s plenty I don’t know here.
All I want to say is this: if I didn’t have really good health insurance, I may not be able to take a drug that I believe gives me the best chance of staying healthy. Breaking it down farther: for some people, money may mean the difference between walking and a wheelchair. Or between life and death.
I knew this before, obviously, but it’s very real to me this week. The next time I see healthcare issues in the news, it’s something that I’ll continue to hold close to my heart. I suspect that others who have found themselves or their loved ones in my position will do the same. Funny how quickly it all gets personal.
steady she goes 
Any drug named Gilenya is bound to work some magic. Fingolimod the High King of Noldor has packaged up some athelas from Middle Earth.
I’ve been an a drug for MS (Avonex) since I was diagnosed in October of 1996. This medication (a weekly self-administered injection) has kept my MS stable, without progression to physical disability – no cane or wheelchair needed, yet. I do have periodic flare-ups (exacerbations), but they’ve happened infrequently over the years, and I’m happy to still be in the MS “Gee, but you look so good!” club. (This is what people not ‘in the know’ say when they find out we have MS.)
I’ll say this – once you find a medication that works for you, try everything you can to stay on it. Biogen (the makers of Avonex) pays my insurance co-pay for my medication. I have heard that they supplement coverage for people who would LIKE to take their medicine, but can’t afford it. Avonex would cost me $36,000 a year without my husband’s insurance.
It is so nice reading your response to this kelly. My two sisters and I have all been having strange symptoms and the doctors keep going back to MS. There is no visible nerve damage, so none of us have been diagnosed. But the doctors don’t want to rule it out either. I’m only 22, so the fact that you have been diagnosed since 1996 and are still moblile makes it a lot less scary. Thank you for you post.
My Mom had MS, her first cousin, my Dad’s first cousin, now me and my sister have joined the club.. I was on Avonex for 11 years, then went to Tysabri for 3 years. I tested positive for the JC virus so I opted out of Tysabri. Other than taking vitamins, and trying to keep up a regular exercise regime, I’ve been drug free for 3.5 years and doing well. As we all know, every single case is different. Side note, I think the “Gee, but you look so good.” phenomena is God’s way of giving us a bonus! Stay positive, and keep on doing what you do.
I think Gilenya is an awesome newer drug. My neuro-ophthalmalogist recommended, but due to an already low heart rate my neuro deterred me from it. I think there is going to be some really good progress in drugs for MS in the next 10 years. Hopefully this will be good news for us all.