This is part one of six letters I wrote to my family in 2009 when I decided to become a clinical participant for an MS drug that is now being considered by the FDA for sale in the USA and Europe.
I am in no way telling you to get on the drug. This is a conversation between you and your neurologist. This is just my account of the first set of treatments. Go in good health.
As most of you know, I was diagnosed on October 30, 2006 with Multiple Sclerosis. The first symptom I had was dizziness for three month straight, starting on August 4, 2006. I was in a wedding that day, and was afraid of falling over due to dizziness and wearing high heels. I did not fall, thank goodness, and thought the dizziness was due to either lack of sleep or water in the ear from having been swimming the day before.
I thought the dizziness would pass, instead it became worse, to the point that when I was walking around at work, I was placing my hand on the wall to make sure I did not fall over. I felt like a drunken sailor on a turbulent sea. I saw my doctor, on more then one occasion, and she said it was just mucus in my sinuses. After hearing this twice and being prescribed medicines that were clearly not taking care of the problem, I saw an ear, nose and throat doctor. He put me through so many tests. By this time, it was September, and I was so dizzy, Jason had to drive me to work.
I was dizzy from the moment I got up to the moment I went to sleep. Not that sleeping took away the dizziness. I could only sleep in certain positions. It was maddening and a little scary. I didn’t know what was going on.
After running me through a lot of tests to see if it was an inner ear infection, or anything having to do with an ear problem, the doctor ordered an MRI. When the results came back, he sent me to a neurologist. The problem had nothing to do with my ear and there was something on the MRI he couldn’t identify.
I saw that doctor once, as he was not on my insurance list, and therefore, too expensive for me. Jason came with me and remembers the doctor stating that is was most probably MS, but I don’t remember that, I think because I did not want to remember. The doctor said we needed to do further testing, which is when I found a neurologist my insurance did cover.
The second neurologist looked at my MRIs and stated it was inconclusive. The white spot on my brain could either be a tumor, an infection, or an MS legion. She left the room to talk to a neurosurgeon and they immediately ruled out tumor. A tumor that size would have affected me to a greater degree then just being off balance and dizzy.
I had to get a spinal tap to find out if it was MS or an infection. That was not a pleasant test. When I described the way I felt to my mother-in-law, she said it sounded like an epidural. Not all women have unpleasant experiences from epidurals, but if you’ve had an unpleasant experience, you know how I felt.
The epidural revealed I had MS. That day ranks high in top bad days. It was not a relief to find out what was going on. I like to say it was, as I prefer knowledge to ignorance concerning my body, but really, the diagnosis terrified me. There are worse brain maladies out there, but still. Finding out I had a degenerative disease ripped through me like a wrecker ball through an old brick building. I had no words, I could think of nothing to say or ask. Jason was with me and was able to ask the important questions, but I was silent with devastation.
The doctor gave me some information on medication and asked me to look over the information for three months before I decided on a treatment. She wanted to make sure I was aware of all the side affects and how well everything worked. She was pushing for Rebif, but I decided on Avonex, mostly because it was a once a week shot as opposed to a three times a week shot.
I started on Avonex in January of 2007. I hated it. The needle was an inch and a quarter long and I needed to stick it into my thigh. I had the option of sticking myself in the arms as well, but I kept looking at my arm, then at the needle and I had to wonder how in the world I was supposed to insert an inch and a quarter long needle into my tiny arm. I am not as small as my mother or my sister; I do have some fat on me, but not that much. If I grab my arm fat, and flatten it out a bit, there is still not enough room for an inch and a quarter needle. So I was stuck with only two spots to stick myself: my left or right thigh.
I found out about halfway through the year, that I could get an inch long needle and switched to that. The problem was, sometimes, the inch long needle seemed too large. Once again, I am not humongous; just a touch overweight, and the inch long needle into my thigh sometimes didn’t fit. Often times, a quarter inch of the needle would stick out as I injected the fluid into my thigh.
This went on for a year. Then in February or March of 2008, I realized that I was getting a new symptom. My left cheek, gums and tongue would tingle, as if falling asleep. It was really disconcerting. I had another MRI and found out the Avonex was not working: I had a new legion. I cried. Hard. I didn’t want to be getting worse, but what can you do, really when your body decides to attack itself? My doctor and I spoke and she prescribed me Rebif.
I started using Rebif in April of 2008. Though I loathed giving myself the shot, the needle was much easier to take. Half and inch long and MUCH thinner then the Avonex needle. Of course, it doesn’t matter how big a needle is; if you don’t like needles, you don’t like needles.
Rebif came with an auto injector, a device that the syringe hides in. You push a button, and it makes a loud sound as If swiftly injects the liquid medication into your leg. I used for a little bit, until I scared myself out of using it. There are 8 spots on the body I can give myself the Rebif shot. My triceps, my thighs, my stomach and my back. I was trying to shoot myself in the arm, but the noise of the auto injector scared me and I jerked my arm away. Fantastic. I tried right away with another needle to give myself my shot in the stomach, about a half an hour later. It was too soon. I jerked away. Much later, about three hours later, I tried again in my leg. Couldn’t do it. I gave up using the auto injector and though it took slightly more time, I injected the needle manually. As I could not reach my back, Jason used the auto injector for my back.
Despite the needle being smaller and easier and quicker to inject, and despite the fact that I had almost no side affects, I hated what I was doing. And I didn’t feel that it was helping me. While on Rebif, I was still developing new symptoms. Nothing debilitating, just odd complications that the MS Society website and a lot of other sources stated were to be expected.
During this time, my second neurologist left the practice due to Visa issues. I have since learned that she had to return to Canada. When I found that out, my first thought was, the United States has Visa issues with Canada? But whatever. She left and I had to change my neurologist to a man that was very nice, but was leaving the practice once his contract ran out, as he was from the Mediterranean and hated winters in Illinois. I don’t blame him. I hate winters in Illinois too.
I saw the new doctor a couple times. I told him about my new symptoms. My left leg was feeling rather odd. It was still winter, I believe November of 2008. While walking into my apartment from outside, I thought there was a hole in my shoe as the bottom of my foot felt cold and wet. As soon as I was able, I checked my shoe and no, there was no hole. I figured it was just my MS and didn’t worry about it too much. Then I noticed that the feeling was not going away. While sitting on my couch one day, I started to rub the spot that was cold on my foot. BIG mistake. My foot went from feeling cold to feeling as if it were on fire. You know that feeling you get when you accidentally touch something hot on the stove? Imagine that on your foot, but you can’t pull away from the heat, because there is not heat source: it’s just your nerve ending going haywire.
Over the next few days, the feeling jumped to my thigh. My calf was not affected, just my thigh and foot. Then to add to this dysfunction, my thigh became over sensitive. If anything pressed against me, including my lovely, tiny cat (Hazel is less then 7 lbs), with even the slightest pressure, it would feel as if something very heavy was being pressed against the whole side of my thigh. I was experiencing some other symptoms as well, but those are private, so I’ll leave those alone.
I told the new neurologist what was going on and about my leg he said he would prescribe me some nerve pain medication. The other issue he stated was not related to my MS and I needed to see my other doctor about it.
I started taking the pills to help my leg. It did help, so that was nice. It helped the other symptom as well, so I did not see my other doctor.
During this time, the MS Society sent me an email with a link to a survey, about being a potential candidate for a test drug. The test drug is call alemtuzumab. It is also called Campath, which is what I refer to it as, since Campath is an easier name to remember and spell. A few of you wonderful people sent me information about this drug when you heard about it. Thank you. All that info was quite informative and was a big factor in me doing the survey.
For those of you who do not know what Campath is and do not want to go online to find out about it, here’s a sum up and MS and how Campath can help:
In MS, the immune system t-cells attacks the myelin sheath, the covering around the brain cells that helps transmit messages to the rest of your body. Campath is a leukemia drug that attacks the t-cells and stops the immune system from attacking the myelin sheath. In previous tests, Campath has been shown to be as effective in slowing the progression, as Rebif, BUT Campath has been shown to STOP or even REVERSE the symptoms. A doctor that was part of the initial discovery of Campath wrote a book called Curing MS. Did he cure it? Sure, for SOME people.
The testing for the Campath is in its third phase. First phase: medicine tested on animals. Second phase: Campath is tested against a placebo. Third phase: medicine is tested against proven drug. In this study the drug manufacturer wanted to test Campath against Rebif, the drug I had been on for nearly a year. Test subjects are either placed on Rebif, or on Campath. There is no placebo. No placebo. That is a wonderful thing. I don’t like taking fake meds. I want to know that I am actually taking a medicine, as my mind is at ease when I’m on an actual medication.
There are side effects, of course, but all three are monitored with monthly blood tests. The three major side effects are a bleeding disorder that can be treated with medications; thyroid problems, also treatable with medications and infections (colds and the like) that can be treated with over the counter medication.
Rebif can destroy my liver.
After completing the survey, I was given information about a doctor in Northbrook, IL, 2 hours from Rockford (it’s a Chicago suburb) and told that his office would contact me in a couple days. This was in March. His nurse Cathy called me the next day to set up a meet and greet. The survey was a pre-approval, it did not mean I was all signed up. The doctor, Dr. Daniel Wynn, wanted to meet me and make sure I was a good candidate and knew what I was getting into. Which is a very good thing.
I drove down to his office on March 20, 2009. I liked him almost immediately. He and his staff are dedicated to their patients. They have over 3000 MS patients from all over the area. He put me at ease and answered all my questions. Out of curiosity, I asked him about the private problem I was having and he immediately stated that it was definitely an MS problem, and then explained that outside of the US, such problems are talked about and not pushed off to other doctors. It was a relief now I was right about this aspect of my illness, and aggravating that the other neurologist was so quick to dismiss it.
Another odd think about the doctor in Rockford is that when I asked if the nerve problems meant a possible new legion, he stated that it was not, that weakness in the body meant new symptoms. As I am still new to all this, I decided he knew what he was talking about and chalked my worries up to paranoia.
When I saw Dr. Wynn for the first time, I asked him what constitutes a new symptom. He stated that numbness can be seen as a new symptom: it was not the numbness or weakness, it was whether or not the problem was in a new area or in an old area. Symptoms occurring in old problem areas do not necessarily mean the MS is getting worse. New symptoms occurring in new areas can mean the MS is getting worse.
Though Dr. Wynn made me feel very comfortable with all the answers he gave me, I was not ready to say that I wanted to be a part of the study. He also did not want me jumping to any decisions, so we sent up a screening visit for April to see if I qualified and to give me time to think.
I took the time to think about it and realized that if I had been signed up with the initial online survey, I would have had no hesitation. When I realized this I was ready to sign the paperwork at the screening visit. I was officially part of the test on April 17th, 2009. I would not find out what drug I was on until a few days before I was administered the drug. This is protocol. The nurse, Cathy, would feed my number (because I did become a number when I was accepted) into the big computer as she puts it, and it would tell us what I was on. There was a one in three chance I would be placed on the rebif; two in three that I would be placed on the Campath.
Side note: another reason I feel very happy with my decision to be looked after by Dr. Wynn is that my neurologist in Rockford left, and I had to meet a new one. Nice guy, but when I asked him when I could stop taking the nerve pain medication (I had been taking gabapentin since November; I didn’t want to take it for the rest of my life) he told me to stop taking the medication then start again if I felt the pain. This was not a sufficient answer for me. It felt as if he was saying that I would be taking it the rest of my life. Not fun.
When I asked Dr. Wynn the same question, he stated: Nerve pain medication does not take away all the pain. If the pain went away, that means the symptom went away and I could probably stop the medication.
Which doctor would you prefer to have taking care of you?
Before Cathy told me what drug I would be placed on, I had to go through an MRI, and had to get blood drawn, and had to give a urine sample to ensure I was not pregnant. One of the stipulations of the study is that a woman cannot become pregnant during the study.
May 27th, I drove down to Northbrook to talk to Cathy, make sure I wasn’t pregnant and get my final MRI. She took me into a room and told me that she received the news on my drug. She asked me if I had a preference. I told her I did. I had been on Rebif for a year and did not feel it was working 100%. I hated taking shots 3 times a week. I wanted to be on the Campath, which is given in 2 infusions. The first infusion is a 5 day IV infusion. The second is a YEAR later and takes 3 days. Let’s see, five days of medicine though a needle, and then 3 a year later or a total of 3 shots times 52 weeks = 523 shots a year. And the study runs for 2 years, so that’s 8 days total hooked up to an IV as opposed to 1064 shots. Hmmm… That was a no brainer. I wanted to be on the Campath.
Cathy looked at me and said, “Well guess what? That’s what you got.”
She showed me the paperwork and it did in fact say alemtuzumab. I cried. Not for a long time, but I did tear up in thanks. I was so happy. It’s a relief, for many different reasons. The biggest is that the drug is showing a lot of promise, and even if it doesn’t work, I am still helping to research a new medicine. Also, no matter what medicine I was put on, all my doctor visits to Dr. Wynn, all blood tests, and all MRIs for the next 2 years are free.
So on June 1st, 2009, I drove down to Northbrook, IL, checked into a motel room (also being paid for by the study), settled in and went to Dr. Wynn’s office. I received an IV infusion of steroids for an hour, to help with the side affects of the Campath, then was hooked up to the Campath for 4 ½ hours. I slept, I read, I played games on the Internet, then came back to the hotel room. It is now Tuesday June 2nd, 6am and I am about to stop writing this letter to get ready for day 2.
Having MS is not the worst thing that could happen, but it seems to have happened at a good time. The drugs on the market have good ratings, and there are new meds coming out all the time. I am very hopeful of my Campath treatments and of the care I will receive with Dr. Wynn and his staff.
So I have willingly become a lab rat and since I have nothing better to do all day then read and write (how awesome is that!!!!!!) I’ll be sending out updates at the end of each day to let you all know how things went. Love and kisses to all you wonderful people!
Cat Stark 