This Is MS Multiple Sclerosis Community: Knowledge & Support

well... me and one of my best friends of 12 years both happened to get diagnosed with MS within a year of each other. We both picked the same neurologist and we both happened to make it to the phase three campath study.

The study qualification was intense.. lots of poking, prodding, degrading testing, and blood work. but we made it.

I wasn't sure up until the last minute that I was going to do it. The side effects are terrifying. I hate IVs and it involves a bigger lifestyle change than I realized. No piercings, no tattoos, no sushi, no unpasteurized dairy, i have to wash every fruit and vegetable.

So our first day was not fun. We showed up at 8:30 am, took a pre-infusion cocktail. It consisted of stomach meds, allergy meds, Tylenol, and some other stuff I never heard of.

Next came the IV. I got two sticks and ended up with it in my hand, ouch! Kristin ( my best friend ) got three sticks but ended up with it in her arm, so at least she has use of both hands.

So we are now ready for the drip. First comes a round of solumedrol. yucky metal taste, mixed with the jitters. Ate a ton of snacks and made my tummy upset.

Finally it was time for the campath. Neither Kristin or I know if we are getting a high dosage or a low dosage. The drip starts and we bear down for the next four hours having no idea what to expect.

We have a bunch of movies to watch, snacks, music, reading material, and comfy pillows and blankets. However the time passes slow. I start to feel disoriented, sluggish, achy, emotional and tired. Kristin got a massive headache and a similar reaction as I got.

Finally the four hours is up. By this point i am mentally and physically exhausted and drained.. but no horrible side effects. Kristin seemed the same but she still had a massive headache.

The drive home was tough. I was weak, vision was bad and my eyes kept wanting to close. when I got home, I crawled through the door and got into bed. I could not get comfortable at all. my body was weak, but my mind was racing! But I was still spaced out, could not focus.

The rest of the night was about the same. I was weak, tired, and disoriented.. that and starving, no matter how much I ate. I tried to go for a walk to give myself some exercise. It was hard to walk. I tried to watch jeopardy but my brain would not work. Finally I took some Valium and passed out around 8:45pm. I slept well until my boyfriend smacked my I IV with elbow around 5 am. I woke up screaming convinced he had pulled it out. Needless to say there was no sleep after that.

I was pretty fine all morning. Kristin however called to say she had a full body rash, which itched, a fever and a headache. We decided between us that she probably got the high dose where as I must have gotten the low dose.

We got to the doctors at 9. Pretty much the same routine as the day before . Pre-infusion cocktail. Kristin IV came out, but mine did not. She took two sticks.. she also got benadryl for her rash. The steroid drip was yucky again. And we just started the campath. I have an upset tummy but Kristin feels fine. We drip another four hours today, but tomorrow we only have a hour steroid drip and two hours of campath. Then Thursday and Friday just a two hour Campath drip. They said we could have infusion sight reactions up until Monday. We could develop graves disease or ITP at any point during the next year or so and we absolutey can not get pregnant at any point during the study ( two years or so)

I will post more later. I am also keeping a video, picture and written diary.

Wish us luck. we are taking one for the team ya'all!

Signed,
The MS bobsey twins

Sugar,

Best of luck with the Campath, I hope you see the good results that I have seen (I had my retreatment in late Nov 2007). No relapses since my first infusion in Nov 2006 and some very good recovery of deficits from earlier relapses. Be patient and hopefully you'll look back and realise you made a good choice.

If the Phase III results are good, I suspect this will become a standard treatment for those with active RRMS.

Do you know which of the two trials you are on? One is for treatment naive patients and the other for those who have tried the injectibles without success?

Out of interest, did you and / or your friend have Glandular Fever / Infectious Mononucleosis before getting MS?

Ian

we are in the trial for people who did not tolerate the CRAB drugs. I never had Mono but kristin had it when she was 13 or 14. i had a severe case of chicken pox. good to hear about your success. keeps us hopeful. Thanks for the comment!

thanks for sharing your experience, it definitely helps others in knowing what to expect.

.

sugar
how bizarre that you and your best friend have been diagnosed with MS. Good luck to you and your friend hope all goes well for you both.
Bromley i was curious as to why you asked if they had Glandular fever/ Infectious Mononucleosis before getting ms, as i had Glandular fever before being diagnosed with ms

Elaine

so day two sucked. For the actual infusion, I felt pretty good. Run down a bit, very stiff and uncomfortable.. but all in all not much to complain about. Kristin on the other hand felt horrible. She pretty much spent the whole day laying on the exam table. She had a headache all day and felt nausea all day. She kept saying she just felt bad.

By the end of the infusion, she noticed that her vein where the IV had been placed was bruising all the way up her arm, then she noticed that her rash came back ( they had cleared it up with Benadryl earlier) only this time, the rash was big bumpy spots. She went and found the doctor, who took her off the Campath right away , even though she still had a few drops left to go. They gave her another shot of benadryl right away and took out her IV. Apparently if her rash gets worse and does not respond to treatment , then they may have to discontinue the study on her. This of course freaked her out.

I felt pretty good the whole ride home and even thought I would be able to go to class, however about two hours after i got home, I started to crash.I was immediately wiped put. My body was useless and uncomfortable. i wanted to lay down and I could not keep my eyes open.. They were heavy and hurt and kept rolling closed. However my body was so uncomfortable and that I could not fall asleep. Again my mind was racing a mile a minute , however I could not really focus on one thought and had a hard time communicating out loud. I sort of drifted in and out of consciousness.

While I was laying down , I noticed that my breathing was becoming heavier and heavier. After a while I decided I wanted to try and walk and limber up my body, while getting some fresh air. The walk felt good and gave me some extra energy. I did not go very far, but I noticed half way through i was able to walk better and I had more energy. however near the end of the walk, I had trouble breathing and could not catch my breath. by the time I got home, i felt extreme pressure on my diaphragm and could not catch a breath or even yawn easily. I called my doctor , he told me to try and relax and that if it got any worse , he would send me to the hospital for an EKG and a chest x-ray.

I took a Valium and to calm down and it seemed to help, however the pressure seemed to move down right below my diaphragm and into my upper stomach , where I began having sharp pain. i took some stomach medicine and laid down and rubbed my stomach. i felt extreme pressure in my whole mid section and could not get comfortable no matter what. I called Kristin, who still had the rash and was starting to panic a bit. i calmed her down and explained that 76% of people get the rash, and that usually it gets better after the second day. Other than the rash, she felt ok but totally exhausted and near falling asleep. The Valium kicked in and I managed to fall asleep around 8:30pm. It was a restless sleep, and i kept waking up to body aches and stomach cramping. I think I must be constipated. At about 1 am I woke up and I am unable to fall back asleep. I took another Valium and a Tylenol for the aches. I would like to use the restroom but I am unable to and still have stomach cramps. I am generally unhappy. I would like to get back to sleep and be sort of weel rested for tomorrow. My IV is sore.

Tomorrow is the last day of steroids and we only have a two hour campath drip as opposed to the four hour drip. Plus after tomorrow we will be officially half way through. YEAH. I have gained 5 lbs in two days but I am hoping it is just the steroids which I am anxious to get off. I think they are affecting me emotionally too. i feel moody , depressed and near tears all the time..

well that is the update. hope this is helping people. I still have hope that i am making the best decision.

Tomorrow hopefully we will update day three. thanks for the comments. it makes us feel less lonely!

Best if wishes to everyone!

sorry for any typos or misspellings

Elaine,

The virus that causes Glandular Fever / Mono is EBV and there has been a huge amount of research showing an association between EBV and MS. Last autumn Italian researchers found EBV is the lesions of 21 out of 22 MS patients. Once infected, EBV remains dormant with you for life in B cells. I'm expecting more research on this in the coming year, but it would explain the typical ages that people get MS and some of the clusters (schools / universities etc) that have been seen.

Ian

rest assured, it is helping and is greatly appreciated. Best wishes!

.

Bromley
thank-you for your response, sounds like they might be on to something.

Elaine