Multiple Sclerosis/Campath/ My Experience
Hi, my name is Laurie. I was diagnosed with Multiple Sclerosis in August of 2001 at the age of 35. I began Rebif in December of 2001, and continued using it for 2 years. Just so you know, I have no problems with Rebif and was doing fine on it with no major relapses. When my neurologist called me in January of 2004 to ask me if I would like to be in a study on Campath, I told her I’d research it and come in to talk to her about it. I had heard about Campath about a year before on the news, but I got online and after about 2 weeks I decided I’d probably go into the study, unless something didn’t check out in my pre screening. I went in to get the prescreening and paperwork stuff done Jan.28, 2004. The study coordinator explained the procedure, what the past studies had showed, what Campath is and how they think it works the risks, etc. Then sent me to see my nuerologist, who asked questions and did the basic neurological tests on me, and then off to the lab for blood work. I went back the next week for another set of blood work, just to make double sure, I guess, and was told to come back Monday to start the first day of a 5 day treatment.
DAY 1/MONDAY: I showed up at 8am and they did my blood pressure, gave me 2 Advil, 1 Benadryl, and 1 Claritin and said OK, now were going to put in a line port. I don’t what I had been thinking, but I hadn’t realized they were going to they were going to do a little minor surgery on me. Oh well, I can handle, they just numbed the spot and went to work. I couldn’t see what the surgeon was doing but I did see blood all over her fingers and felt the tubing going up my arm to my shoulder. I wouldn’t say it was a pleasant thing but bearable. Next, they took my to a room that had 3 recliners and a TV and DVD player in it. I sat down and the nurse hooks up my first bag of solu-mdrol steroids to my port, the steroids are the first hour, then the Campath for the next 4 hours. The nurse put the IV bag and the next one in a little tote bag that I could carry around to go to the bathroom, break room or even outside. After about 1/2 hour the next person got brought in to start his treatment and then a last. We 3 were going to spend everyday together for 5 days. After my pump started beeping, the nurse came in and hooked up the Campath. About 10am or so I fell asleep and woke up at 12:45, the others woke up shortly after me and we were told there was lunch in the break room. chinese today. We all went down got us a plate and ate, by then it was about 2pm and I started beeping again, the nurse unhooked me, flushed me and sent me home. Told me to take a Motrin when I got home. I felt fine and probably stayed up till one 1am. The port was bugging me due to the sore stitches.
DAY2/TUESDAY: I got there a little after 8am and got my pill cocktail and then hooked me up to the steroid IV again for an hour, then to the Campath for 4 hours. I wasn’t tired Tues. so I spent most of my time outside playing with my dog and talking on the phone with friends, they had salad for lunch that day. I wasn’t feeling as good as I drove home from treatment. When I got home took my Motrin, I all of a sudden started running a fever. I layed down and took a 4-hour nap. I felt better when I woke up. Stayed up till about 2am that night. Ate a lot of food that night.
DAY3/WEDNESDAY: This was the last day of the steroids, The port had quit being sore it was probably healing now, they got me hooked up and started. I was getting pretty bored by now, and also wired due to 3 days of IV Solu-medrol. I spent more time outside playing with the dog and talking on the phone. They got seafood for lunch though, stuffed crabs. I ran a little fever when I got home that day, but not bad at all, stayed up till about 1am again and ate 1/2 a chicken.
DAY4/THURSDAY: Only two more short infusions left now. Now there are no more steroids and they pump the Campath in you in 2 hours verses 4. I was finished by about 10:30 and went to work afterwards, I’m a dog groomer and only did 4 dogs that day. I went home and got changed and decided to go to my support group meeting. As I was driving there I noticed things were really getting blurry, in the restaurant we meet at it’s not bad but driving was pretty scary. I called the nurse when I got home, he said I need to take it easy. I went to bed at a decent hour Thursday night. I did notice today though, for the first time in almost 3 years, my legs don’t hurt at all anymore, I know it’s the steroids, but sure is nice for a change, I’m going to enjoy it while it lasts.
DAY5/FRIDAY I got hooked up and got more Campath put in me for 2 hours and then the dreaded removing of the port. This was something all three of us imagined being horrible. Don’t know why, maybe because we had tubing all the way up to our shoulder through an artery, but as it turned out two snips of the stitches and a cotton ball over the hole and he just pulled the whole thing out.
We were given several rules, precautions etc. One being do not eat any fresh fruits, vegetables, undercooked meats, or seafood for about 3 weeks. The reason was because our immune systems are gone and we are suceptible to getting hepatitis. For about 3 to 8 weeks we are suceptible to getting pretty much anything for that matter. I kind of already found this out because about 4 days before I started treatment I got bit by a dog, it wasn’t bad and was already pretty close to being healed, now after treatment and some reason it accually looks worse and seems to have gotten deeper now. I may have this bite for a while I suppose. Also, No prolong sun exposure, as we are going to be more sensitive to the sun.
THE WEEKEND/ After the last treatment was done, I went home, and after being home a few hours I started not feeling to good, so I took a nap. When I woke up 4 hours later, I was in excruciating pain, the closest thing I can think that it felt like, was if my ribs, back, neck, arms and upper part of my legs had been beat with a baseball bat, and were horribly bruised. I could barely move and I want to scream if I touched any part of my body. I was sure I would have remembered if someone had told me about this side effect. I got online and asked around if anyone had ever had this with IV steroids, no one had. I called the guy who had done this infusion with me, he said he felt fine, so I called the nurse. He said, hummmmmm, must be your body reacting to the Campath, but he was concerned, which worried me a bit, he told me to call him in the morning to see how I was doing then.
I stayed up pretty late, probably 1am or so, called my boss told her there was no way I could make it to work in the morning, not in the pain I was in. I was OK as long as I didn’t move at all, my computer chair turned out to be the most comfortable place to be. Even bed was a nightmare, because it hurt just to try to lay down, and God forbid I wanted to re-adjust or anything. I took an 800mlg Motrin, a Darvecet, 800mlg nuerontin, and 2 Benedryl (nurse told me to take that), with no relief whatsoever.
I woke up Saturday morning, still in the same amount of pain, I was also starving, I ate something and took a couple Darvacet, and a Motrin and waited till 9am to call the nurse. I asked him if I could take a Valium, since nothing else was working, which he said take whatever you usually would and he’d call to check on me later in the afternoon. So here I sat, not moving unless I had too, which I did a lot going from the kitchen to the computer all day long. I ate non-stop all Saturday until about 9pm, when I decided to go to bed early before I exploded, or died of pain. I was starting to think, I may have made a huge mistake, if this pain doesn’t end and I’m stuck with it, I’m totally un-fuctionable!!!
I woke up about 7am Sunday morning and the pain was gone, I was just a little sore, but overall felt pretty good. I spent the whole day relaxing and got to finally take a shower; I hadn’t had one since Thursday evening. I couldn’t have imagined trying to take one with the pain I had been in. It might have killed me, and with those steroids and the Campath, whichever one or both, had caused night sweats really bad as well.
After treatment
WEEK 1 I went back to work on Monday, I felt a little weak, from what, I’m not sure, the treatment, not working all last week, or just MS, who knows.
As the week progressed I can feel my body trying to go into an attack, my numb face has increased, left leg is a little stiffer, I also got tremors in my hands and legs. I also noticed it a little harder to drive; my reaction times are a bit slower. I also seem to not remember things I know I know, like my dog’s name.
I called the nurse when the tremors started and told him what’s going on. The reason they give you the IV steroids in addition to the Campath is because the Campath can cause you to go into an attack and the steroids will try to counteract it. The nurse also said the Campath could cause you to lose some of your short-term memory for a couple of weeks as well. So, as of now everything is still OK. I feel like my body is in limbo right now, it wants to go into an attack, but the steroids are saying NOOOOOOO!!
My legs feel great still, I’ve forgotten I have them because they don’t hurt anymore as of now.
The tremors have been going on for 3 days now, this is Friday. I called the nurse and told him, so he set me up an appt. to go see my nuerologist on Monday. I sure this will go away, but this could also my detremental to my job. People tend to get a tad bit upset if their dog comes home missing an eye or ear!
It's Friday now, two weeks after I've finished the treatment. I ended up canceling my appt with Dr. on Monday, because the tremors passed. Tues, was awful though, I got electrical shocks in my hands, they were truly, icky, I kept looking at may hands trying to see the blue sparks that I was sure were there, shooting out on my palms, and I thought the tremors were bad! Luckily, those were all but gone by Wed. I was a bit tired on Wed but it was my day off so, I just relaxed. Thurs, and today I feel pretty good, worked really hard on Thurs. and didn't get tired, now real pain, that I'm not use too, so I hope and am guessing, the steroids and me beat this attack. My legs have started hurting just a tad, but I expected that after the roids to start wearing off, so no big surprise there. I'm either lucky or weird, the steroid eating thing ended quick, so I didn't end up gaining weight either, and I didn't get puffy either. I wonder about the sleeeping thing though, I'm still sleeping my normal 7 hours a night, no nap, just like on Rebif. I still got another week or too to find out if the Rebif was helping with that. Last time I didn't get my Rebif for about a month, three weeks after I was off it, I got horrible fatigue. The Campath could kick in and take over though, so I may never know, which is fine too.
It's Friday the 5th of march now, allmost a month since I started the infusion. I seem to have beat the attack and feel OK, and if Rebif has worn off or got out of my system, it hasn't caused any fatigue of anything, in factif anything I'm not tired at all. I ended up being up til 2am last night, no real reason, just wasn't tired, and woke up at 7:30 and feel pretty good today.
I go in for my one month check up on Tuesday next week. Not sure what they will be doing o check me, I suppose take blood and maybe get a quick nuerological test and such.
March 9th I went in for my one month check up. The nurse took my vitals, and gave me my paperwork for my bloodwork. I asked if my immune system is pretty much recovered. He said not fully, but I could go ahead and go places and do what I usually would, just don't go hang out in a TB clinic or anything. (There went my Saturday night plans. LOL)
I then went to talk to my nuerologist. I told her about the tremors I get if I overdo it, which she jotted down. I also asked about the two day pain fest I had right after the treatment, and was assured that I was the only person who that had ever happened to. Aren't I special!
She told me that people in the past on Campath say that after 6 months they feel the best they've felt since they were diagnosed. I asked, So, there's a chance this numb face will go away? She said MAYBE!!
As I was leaving I saw one of the other people That did the infusion with me and talked with him for a few minutes. He didn't fair as well as I did after the infusion. The steroids didn't protect him enough, and went into an attack, at least that's what seemed like to me. He said he devoloped fatigue really bad, and looked like it too. He had gotten tremors and said really bad weakness in his legs. I believe there were some other things as well. I did hear our Dr. say he should start coming out of the relapse soon though.
Wed. 10th, I mowed my yard, afterwards I got tremors that lasted for about 6 hours. Guess I probably need to still do things a little at a time.
I've feeling pretty down lately and after about a week and a half of this bluesy feel, which I reconized as depression, I called my nuero about getting on an anti depressant. She asked we to come in, which I did Tues March 22nd. When she asked me what was going on, i started bawling, I told her everything is fine at home and with money etc. just not being normal, crying, shapping at my boss, not sleeping , not eating etc etc. Anyways, she gave me Lexepro for my depression. After about 3 days I feel better, that andi D seems to upset my stomach some, but my mood in better anyways. I feel like I may have a sinus infection as well, but really not sure yet. I 'm not sleeping real well yet so my tremors come out more, but all in all I'm ok as of now.
Click on the links at the bottom of this page to read about what Campath is and how it works. Feel free to sign my guestbook and comment if you like.
Go on to part 2 of my experience to see to continuing progress of campath....
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