My Battle With MS
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This past June I went in for an MRI, which is nothing unusual. I met with the doctor last week. At that time he compared the June MRI to the MRI had the time before that. Just like the last time I was shocked. When I left I sat in my car and cried. Anyway, I do have some lesions that have shrunk, but unfortunately, I have new lesions. Which means my immune system has been active and attacking my nerves. I have been feeling fine and haven't shown any physical symptoms. However, the doctor told me I am very very very lucky to not be or have gone through a major exacerbation. He said we are done living on luck. So, he gave me four choices of treatment to pick from. Fortunately I didn't have to pick right then. He told me to go home and do some research and then come back in a week. My choices were:
1. Tysabri - a monthly IV infusion. This is a new MS drug and not a whole lot of data on it yet. It is known to cause a rare brain infection that can result in death or severe disability. However, many people do well on it.
2. Chemotherapy (WHAT!?!? I know, that's what I thought). It's not what you think. It's a pill called CellCept and it's actually used to suppress the immune system in patients who have had organ transplants. I would take this pill and my Rebif (3 times a week injection) that I'm currently taking now.
3. Chemotherapy aka CellCept, Rebif and a monthly IV infusion of steroids. I have responded well to steroids in the past.
4. Join a research group using an oral medication originally prescribed for psoriasis. Apparently they are using it in Germany for MS and my doctor is running this research group.
Wednesday was my appointment with the doctor and I had to make a decision. I actually went in thinking I was going to do the Tysabri. However, after asking our questions Ryan, the doctor, and I feel that CellCept, Rebif, steroids is my best option at this time. Why do this? The CellCept will suppress my immune system and hopefully stop it from attacking my brain or at least stop it from doing it so much. The steroids will help with the lesions and any MS symptoms I may develop along the way. The hope is to get the immune system leveled out and regulated. The doctor said yes my immune system will be suppressed, but I don’t have to take any more precautions than common sense wash my hands, don’t stand in a room full of sick people, etc.
It was a tough decision, but we made it. The doctor said he thinks we made a good decision and said that we had good questions. Treatment started yesterday. I picked my CellCept up from the pharmacy and took my first dose that evening. For the first two weeks I will take 1 pill 2 times a day, then after that two weeks is up I take 2 pills 2 times a day. Even though it is called a chemotherapy drug I will not lose my hair or have other side effects that a cancer patient may have. My dose is too low. However, I'm beginning to wonder, 2 pills 2 times a day!?!? Monday, Tuesday, and Wednesday of next week I go for IV steroids. There after I only go once a month. I have already been taking Rebif, so I continue with that as is. It's been so easy to "forget" that I have MS that the MRI scans were pretty shocking. But, we made a decision and we are moving forward. I can't let this get me down. I have a little girl to care for and watch grow up!
1. Tysabri - a monthly IV infusion. This is a new MS drug and not a whole lot of data on it yet. It is known to cause a rare brain infection that can result in death or severe disability. However, many people do well on it.
2. Chemotherapy (WHAT!?!? I know, that's what I thought). It's not what you think. It's a pill called CellCept and it's actually used to suppress the immune system in patients who have had organ transplants. I would take this pill and my Rebif (3 times a week injection) that I'm currently taking now.
3. Chemotherapy aka CellCept, Rebif and a monthly IV infusion of steroids. I have responded well to steroids in the past.
4. Join a research group using an oral medication originally prescribed for psoriasis. Apparently they are using it in Germany for MS and my doctor is running this research group.
Wednesday was my appointment with the doctor and I had to make a decision. I actually went in thinking I was going to do the Tysabri. However, after asking our questions Ryan, the doctor, and I feel that CellCept, Rebif, steroids is my best option at this time. Why do this? The CellCept will suppress my immune system and hopefully stop it from attacking my brain or at least stop it from doing it so much. The steroids will help with the lesions and any MS symptoms I may develop along the way. The hope is to get the immune system leveled out and regulated. The doctor said yes my immune system will be suppressed, but I don’t have to take any more precautions than common sense wash my hands, don’t stand in a room full of sick people, etc.
It was a tough decision, but we made it. The doctor said he thinks we made a good decision and said that we had good questions. Treatment started yesterday. I picked my CellCept up from the pharmacy and took my first dose that evening. For the first two weeks I will take 1 pill 2 times a day, then after that two weeks is up I take 2 pills 2 times a day. Even though it is called a chemotherapy drug I will not lose my hair or have other side effects that a cancer patient may have. My dose is too low. However, I'm beginning to wonder, 2 pills 2 times a day!?!? Monday, Tuesday, and Wednesday of next week I go for IV steroids. There after I only go once a month. I have already been taking Rebif, so I continue with that as is. It's been so easy to "forget" that I have MS that the MRI scans were pretty shocking. But, we made a decision and we are moving forward. I can't let this get me down. I have a little girl to care for and watch grow up!
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keep us posted
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