Hi all I finished a week of campath 12 days ago and well, it feels like my body is different just like I felt last year? It seems to have brought back old pain, pain I’d learnt to deal with now it’s back with avengance. I also been suffering with insomnia. Waking in the middle of the night wide awake. I’m writing this not to moan about my MS but to query, when will I start feeling any benefit? You hear of people having this treatment then training for a marathon I’d be happy just to wake up not tired! All advice welcome. Jamie x
Hi Jamie!
How do you do? Unfortunately, I don’t think there are that many of us about, so nice to touch base with another member of our exclusive club.
I underwent my first five infusions of Alemtuzumab between 9-13 September last year. It all went very well, although I didn’t manage to avoid the ‘Campath Rash’. Did you? I expect that you are now on a 30 day course of anti-virals? I waited two weeks, before I started venturing back to the gym and thankfully, I am now properly back into my half marathon training for March.
Don’t expect miracles. I’m certainly not, although I haven’t had a proper relapse yet. That said, I have only experienced a total of five relapses, since 1995 when I acquired MS.
My MS Nurse made it quite clear to me that I should expect a recurrence of any of the MS symptoms that I had experienced during a relapse. And I did.
Now, whilst a dodgy Bladder and Vertigo have formed my previous relapses, my most significant relapse which led to my diagnosis in June 2013 is Secondary Dystonia. My dystonia manifested/s itself as painful muscle spasms and spasticity affecting my whole left side; especially my left arm and leg. Unfortunately, I am still experiencing them but they are by no means as severe or painful as they were from June- August 2013.
To be honest, if that is what I am going to be left with, I am quite happy about it. Like I said, it’s been a helluva lot worse.
Remember also, that this is your first set of infusions. My next round of infusions is now provisionally scheduled for Sept 2014. I expect yours will be scheduled for Jan 2015 now. Apparently it can take a second or possibly a third round to make a real difference to MS activity. Crucially, I am very interested to see a new MRI scan. After all, that will show how things are going.
In the meantime, I will continue doing what I’m doing; kicking the butt of MS with my running etc. It won’t be able to keep up, that’s for sure
Sorry, I’ve probably demonstrated how NOT to write. I’m not long back from a training run and am absolutely knackered. That said, I had to reply to you, before I completely flake out on the sofa-lol!
Please post me, if you want to.
Here are a few useful links which you may find interesting. Unfortunately, I can’t hyperlink from this laptop, so just copy the url’s:-
I also subscribe to ‘mikeseesblueskies’ on Youtube. Type in Alemtuzumab and Mike chronicled his experience with Campath. I found it very inspiring.
Anyway, just contact me, if you need to.
Good luck
Tracyann xx
Bumping up as tracyanns post not showing xx
Thanks for the bump, Zoe! I sent a post to the Moderator, because it took ages to publish my post.
Hi again Jamie. Forgot to mention. My fatigue levels are probably more noticeable now than they were before the Campath, but I am not putting that down to the Campath. I have certainly not experienced insomnia. Have you experienced sleep problems in the past? I certainly didn’t find that the Campath treatment adversely affected my sleep pattern, but people respond to Alemtuzumab differently and it’s possible that it has disturbed yours. Remember, you have only just finished the first round of infusions.
Your body has been put through an aggressive treatment. Alemtuzumab is a monoclonal antibody chemotherapy treatment. This is serious stuff, Your immune system is virtually zero and you have to expect to find the going a little tough at present. Your body needs at leat 3-6 months before it settles back down. Your moving way too fast- slow down!!
I don’t know you or your background, what your medical history is or what your way of life is like, so it’s a bit difficult to surmise how soon you should expect to see any improvements. Everyone responds differently; after all every one experiences MS differently.
My only real advice is to check out the web links I sent you. The Moderators have kindly hyperlinked them now. Both individuals diaried their treatment over a long period, so I found their experiences invaluable.
Good luck
Tracyann
Hi tracyann thank you for your comments and sorry for the slow reply. I never experienced the rash,luckily. I don’t really feel anything at the moment other extremely aching legs, unfortunately I suffered insomnia around the same time as I relapsed 2 yrs ago maybe this has something to do with it?? Anyway, thank you for taking the time to reply Jamie x