Morning Currently on tysabri, but had a letter from neuro saying, I strongly recommend you consider swapping treatment to campath. Anybody on this treatment or had any experience of it. Thanks Gray
I know a lady who was on the Campath trial. She had a couple of bad relapses at the start of her MS and didn’t like the sound of self-injecting so she opted for Campath. She hasn’t had a relapse since. I think she had her infusions about 5 or 6 years ago. She has had some serious side effects, like thyroid problems, but she says they are easier to manage than huge relapses that leave you paralysed. She doesn’t regret it for a moment.
I’ve also met a young man who had Campath about 8 years ago as part of a trial and he can now walk/jog miles and also hasn’t had a relapse since. He’s also convinced he will not have a relapse in the future and swears Campath gave him his life back. He has a young daughter and is a single parent so it was really important for him to keep mobile for as long as possible.
I’m on Gilenya now but if that fails me, I’d opt for Campath next. I’ve read all the side effects but they scare me less than Tysabri. I also like the fact that you have all the infusions in one week and then get on with life apart from the blood tests etc. It doesn’t seem as restrictive as monthly infusions. Just my opinion though
I also know someone who did the trial - no relapses since her first infusion in December 2009 (she was previously relapsing every three months) I’ve just been turned down for it, despite four relapses in the last year, as my MRI scans show no change and no new activity and I had an “almost normal” physical exam. If they’re offering it to you, I would bite their hands off. Yes, the potential side effects are scary but they are for Tysabri right? High risk, high gain.
Hi, I had Campath in 2009 and 2010. Apart from a few minor problems brought on from urine infections I haven’t had any relapses since taking it. It has improved my walking and got rid of the brain fog I used to have. I have still been left with the disabilities I had before but they haven’t got any worse. I must admit with the first lot of infusions I wondered if I had made the right decision, I felt dreadful the first couple of weeks and was off work for four weeks. It effects people differently so you may not feel so bad afterwards. It made me feel really tired. About a month after returning to work people kept saying my walking had improved - I wasn’t walking like a robot. I didn’t catch any other infections such as cold anymore often than before. I have ended up with an over active thyroid though. You are well monitored with monthly blood test for four years so they will catch anything early. Luckily I’ve finished my blood tests as my veins are beginning to protest.
I had my first round of Campath/ Lemtrada in Sept last year, following a major relapse that partially paralysed my left side for several months. I’m due to go into hospital again this forthcoming Sept and am now just awaiting a date.
During the treatment, I experienced the dreaded ‘Campath Rash’ on day 3 and felt pretty ‘washed out’ towards the end of the treatment, but nothing that should not be expected with that type of iv infusion. I left hospital with one months course of anti-virals and avoided too much human contact because, obviously, my immune system had been depleted.
Over the following months, my fitness and stamina improved, although I did experience a return of my worst MS symptoms- (Secondary Dystonia), to a lesser degree . However, this is quite normal, apparently! That said, I returned to my running and ran a half marathon in March 2014 and a 24hr endurance event in April.
As of todays date, I only experience the Secondary Dystonia symptoms occasionally, which is a massive relief, but the minor MS symptoms (fatigue, sensory issues etc) remain always.
As with MS itself, everybody responds differently. Unfortunately, it’s a lonesome road- MS!
Anyway, good luck with your final decision. Please feel free to PM me, if you need any further info or advise.
I’ve just started a thread on here to ask if anyone has tried or knows anything about lemtrada and then I just found this thread! It’s good to know it’s been working for people and the results are lasting, when I see my new neuro I’ll be asking for more info about it