Wednesday February 9, 2011
The Tysabri "rebound effect" refers to the phenomenon of people developing significantly more MS lesions in the months after they stop treatment than they had before they started.
I'll admit, I was a little reluctant to write this piece, as there is very little information in the medical literature. As far as I know, this has really only formally been studied in 2007, about a year and a half after Tysabri was withdrawn from market suddenly because the connection to PML was discovered.
Because there were suddenly a number of people who had all stopped at the same time, it was convenient to look at this group to see what happened to people who had been on Tysabri and stopped, which is what some Dutch researchers did. They identified the Tysabri "rebound effect."
I expected that all sorts of studies would follow, but I am unable to find any. I have found some recent work about Tysabri "drug holidays," looking at what happens in the short-term after stopping Tysabri, but none that look at the longer-term lesion burden or clinical consequences.
Therefore, I am sharing the article that I wrote, but also asking for anyone to send me additional information that they might have about the rebound effect. Whether you have personal experience or know of an article that I may have overlooked, let me know in the comments section, as I would love to shed more light on this situation. I really appreciate it.
Read the full article: The Tysabri Rebound Effect
Tuesday February 8, 2011
Because the risk of progressive multifocal leukoencephalopathy (PML) increases with the duration of Tysabri treatment, some docs have put their patients on a Tysabri "drug holiday." This simply means that Tysabri treatments are stopped for a period of time, usually 6 months, then started up again.
While it might seem like a good idea theoretically to let the body kind of "reset" and regain tolerance to the JC virus that causes PML, the immune system is not quite that simple, nor is MS.
Tysabri drug holidays have been associated with an increased risk of relapses, some of which are "severe." Make sure that you understand the risks involved with a "drug holiday," as well as your doctor's rationale for suggesting that you stop Tysabri.
Read the full article here: Tysabri Drug Holidays
Tuesday February 8, 2011
It has been a long time since I have been this outraged because of simple stupidity.
When I reported on the FDA recall of Trient alcohol swabs in this blog, Copaxone and Betaseron Users Should NOT Use Their Alcohol Prep Pads, I guess I thought that most people had already been contacted by the drug manufacturers or their pharmacies about this issue and that I was just catching a couple of people who had overlooked the info. In fact, many of you had not yet heard of the problem with the pads, but (I assume) were contacted within a couple of days after the post.
I then received a couple messages which really disturbed me. It turns out that some of you were denied your medication by your specialty pharmacy because the boxes contained the alcohol pads. A couple of you even asked the pharmacist if they could just ship the medication without the pads and were told "no."
This comment is the one that sent me into a rage:
"Be prepared for this!!! I had a refill into my pharmacy for my betaseron refill. I was to pick it up this week. Then yesterday I get a call from CVS saying the medication was recalled (he didn't even know why) so my order had been pulled and was no longer available. They offered no solution on what to do to get my medication, nor did they have any idea of when it would be available again.
Due to an email I already knew about the alcohol pads, and was using an alternative. I would rather have my refill and continue to use the alternative rather than be without my Betaseron. I asked him what MS patients were supposed to do without our meds. His response was "Can't you just take steroids?". UGGHH!!! "Only if I am having an exacerbation!" I told him. This is not a solution!! HELP!!!"
How many of you had to deal with this problem? This is completely unacceptable and the drug manufacturers should know about it and care how their consumers are being treated. Please leave your comment in the comment section below.
By the way, I just checked my recent order of Copaxone - there is a huge sticker on the top of the box that reads, "This box does not contain alcohol preps (swabs)." That's one solution that works for me.
Tuesday February 1, 2011
The National Multiple Sclerosis Society and the MS Society of Canada have just released their report on the first 6 months of progress on the seven CCSVI studies that they funded June 1, 2011.
As an epidemiologist that has been involved in research, I was amazed that the Societies were going to release updates every 6 months. Although the first 6 months of a study is an extremely crucial time for getting everything ready, including forms, recruitment plans and ethics committee approvals, it can also be a dreadfully frustrating time. Things often seem to move backwards as ethics committees ask for resubmissions, recruitment of subjects proves challenging and challenges that you could have never forseen crop up.
So, when you look at the results from the first 6 months of these grants, don't expect any big revelations as to the CCSVI and MS link quite yet. Think of this research like the first months a pregnancy - maybe amazing things are happening, but it doesn't look like much from the outside. This report does give a pretty rare opportunity to see the underside of the research process.
We can probably expect to see some preliminary answers in the next report, six months from now. Share any thoughts in the comment section below.
Take a look for yourselves: Research Teams Report Progress from First Six Months of 2-Year Projects Focusing on CCSVI and MS
