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Posted: Fri Nov 20, 2009 10:49 am
by Grumpster
Hey Lisa, yes I was on Rebif until the wash out. I do not think Rebif was doing anything for me though. I had been on it for ~4 years and it seemed to work at first then in the end it seemed not to do much besides give me a headache.


[b]Update: LittleLisa is going to get Campath again[/b]

Posted: Fri Dec 04, 2009 12:35 am
by LittleLisa
Update: LittleLisa is going to get Campath again

My doctor decided to keep me in the trial. I am going to be getting Campath again next week. Apparently, the Campath will not limit my doctor from being able to treat a relapse in the future (although, I hope she will not need to). I also think that my doctor (and Genzyme) are interested to see what happens after a second dose for a patient that did not respond to the Campath in the usual great fashion that most patients have.

I have recently learned a few things. There is a new theory that there are two types of MS, one that is controlled by T-lymphocytes, and another that is controlled mainly by the B-lymphocytes. The Campath kills both of them, but after about 4-6 months, the B-cells begin to regenerate. This could be a reason why some patients do really well for a few months, and then start to relapse, while other patients continue to do very well for a much longer time.

One other thing that I learned was that just because Solu-Medrol did not help me with this relapse, (eventhough I had 4 or 5 rounds of the drug in the last few months) it does not mean that I am immune to it forever. Apparently, my doctor has treated several patients that had a relapse that did not respond to Solu-Medrol, but when it was administered at a later date, it did stop their relapses. I find this to be a relief, since the IVIG was unbelievably expensive (~$21,000.00 for 5 days), and did not help me much, and Solu-Medrol does always make me feel better (even if it does not actually stop the formation of active lesions).

I will keep you updated on what happens with the Campath. I am currently very hopeful, since I am currently about a 5.5-6 on the disability scale. I think between the Solu-Medrol, that is given before the Campath, and the Campath, I should feel much better fairly quickly. It should kill all of those naughty immune cells, and reduce swelling.

Posted: Fri Dec 04, 2009 12:25 pm
by freiguy
Are you getting the second dose which is three days instead of five? Good luck with everything. Keep us posted on you progress.

Posted: Fri Dec 04, 2009 1:35 pm
by Lyon

Posted: Fri Dec 04, 2009 6:28 pm
by LittleLisa
freiguy wrote:Are you getting the second dose which is three days instead of five? Good luck with everything. Keep us posted on you progress.
Yes, this is my second dose of Campath, that is why it is only 3 days.


Posted: Mon Dec 07, 2009 2:52 pm
by leetz



Finished second year of Campath last week

Posted: Mon Dec 14, 2009 4:22 pm
by LittleLisa
I finished my second Campath treatment last week. I am very slowly beginning to get better. My legs are more coordinated and less spastic. I am able to walk in my house without my cane, and I hope to be able to start riding my exercise bike again in the near future.

My last MRI showed that I actually had 2 active lesions on the brain, prior to the second Campath treatment, and even though they were not very large, they were causing a great deal of disability. Because of this, I had the 3 days of Solu-Medrol and Campath (as prescribed by the trial), and an additional 2 days of Solu-Medrol to assist in reducing the swelling.

I am really hopeful that this will help me. I already feel better, other than the unpleasantness of the ever increasing side effects of Solu-Medrol. (Every time I take the steroid, I have a little different experience, and it seems that the side effects get worse the more times that I take it). I do think that it is worth all of the trouble if it makes my legs work, though.

As a side note, I recently heard about a drug that improves leg muscle strength and muscle fatigue called Fampridine, my doctor is probably going to try me on it in the fairly near future. Perhaps, it will make my legs work better. This drug was recently approved by the FDA.

Any way, I will keep you posted on the progress.

Posted: Mon Dec 14, 2009 4:51 pm
by Lyon

fampridine (and campath)

Posted: Mon Dec 14, 2009 4:57 pm
by k6ristin
HI again,
I used 4-AP off and on @ 1 yr ago; it seemed to work ok. (2x campath & worsening of symptons right after both, then 3mo short of 2nd annual infusion recurrance of new symptoms w/ lasting damage but no MRI negative change, in case you forgot :)

4ap is available through compounding pharmacy, and has been around for a LONG time. lots of data in spinal cord injury. so the thing w/ 4 AP is that, being compounded, there can be a wide variety of variables, so each batch theoretically could be a lil different. when i changed pharmacies, i had bad side effects and never tried it again. the first pharmacy, i didnt have side effects and had mild improvement; but it only lasts 4 hours. literally: 240 minutes. then bam, its gone. you don't feel anything from the drug, just notice a little easier or stronger to move around.
so the benefit of (accordia's?) fampridine is 1) sustained release & 2) unified formulation. the downside is the price will rise exponentially. right now i pay $90 for 1 month supply, no insurance coverage. maybe it would be better w/ insurance and a low copay but i'm sure they'll charge insurance a crapload, thereby making everything cost more all together. that's the US healthcare soapbox??

so stay strong! stay hopeful! you are science-in-the-making and blogging so we can read about your experiences play by play, instead of reading a boring journal publication with no names or faces to the data. thank you for sharing! best of luck! don't forget the simple things like diet & exercise...