27 September 2011

I haven’t posted in quite a while… that seems to be a consistent beginning to posts for me lately – doesn’t it! :-/ Sorry about that.  A LOT going on right now.

I wanted to label this post as ‘brain vomit’ – but I figured that wouldn’t be very appealing – so I’m leaving it untitled for now.

Back in July – I posted about having to stop the oral treatment I was on because it decided to wage war on my liver (big bummer) and that I’d have to start another treatment. Well – I can expound a little bit about that now.  The last treatment option for me (that is FDA approved for Multiple Sclerosis) is Tysabri. That would be the medication that was pulled from the market for a time when I was first diagnosed around 2005 because of deaths related to PML – a rare & untreatable brain infection.  This drug has returned to the market after more research & I’ll try to sum it up in a nutshell… The researchers discovered that there is a virus – the JC Virus – that is the precursor to PML… Normally – on its own, JC Virus doesn’t really do anything to you however if you have the JC Virus – your chances of developing PML while taking Tysabri is much MUCH higher than if you don’t. (Just like MS, no one knows how one contracts the JC Virus). That said – the researchers developed a blood test that can check to see if a patient has the JC Virus or not. A good step in the right direction and should remove some of the risk associated with Tysabri treatments, right?

So – I requested to find out how to get tested for the JC Virus before I started on this new treatment. It took quite a long time – but I got the results to that blood test yesterday. Guess what? I tested positive. DANG IT!

In the same breath that my neurologist told me I tested positive for the JC Virus – she continued with “I still think you should start Tysabri anyway – however, you’ll just be limited to only 12 doses (one year’s worth of treatment). After that we’ll have to re-evaluate & find something else – likely transfer you to a doctor with UCSF or another doctor that is more MS specialized.”

I’d be lying if I said I remembered much else of the visit after that… my husband tells me that the two of them discussed exactly what this meant & how the chances of getting PML during the first 12 doses is negligible at best… yada yada yada.

As we were leaving the appointment, he walked me to the infusion center & we scheduled the first dose for next Wednesday – Oct. 5th.
·        So - I haven't yet started Tysabri - but I'd be lying if I said I wasn't scared to do so.
·        I'm told (by my medical team) that it's my last 'on-label' drug option. I have the neutralizing antibody to interferons - so the rebif, avonex, betasaron drugs are basically saline solution once injected into my system. I'm told that copaxone isn't a good option for me (which is good since I don't think I could do the daily injections and be consistent with it). I've tried the new oral medication (Gilenya) and was kicked off that in less than 3 months because it put me at near liver failure stages... I've even done a medical trial for 'BG-12' and continued to relapse on that and was removed from that trial.
·        So here we are... one last drug to try before we truly start grasping at straws… and I’m positive for the JC Virus. Of course. But - in spite of this, my neurologist and husband are pretty adamant that I begin Tysabri treatment. I've had such a crappy response to every other drug I've tried (meaning I seem to be in that small group that has the bad side effects) I'm scared witless about starting this treatment...

·        *sigh*
·        I think I'm becoming resigned to it - but that's not exactly how I want to be when entering into a new treatment option.

07 September 2011

I'm what one would call moderately active on Facebook. I belong to a number of different groups - some are patient groups for specific drug therapies, and others are general non-profit / MS related groups.  Today - as I was checking in with the groups I belong to - I got fed up - and posted a somewhat negative comment just a few seconds before I clicked on that lovely 'leave group' button ... here's what I said:

I don't generally post negative comments - however - I strongly feel the need to add a comment on this page as to 'why' I am 'leaving' this group. My understanding is that this page should be used to discuss the ***(removed)*** - and NOT to be used for others to attempt to draw profit for their own causes/products, etc. Unfortunately, that appears to be happening here & it drowns out the actual message of the ***(removed)***. Each individual posting their wares may have the best of intentions - but I find it highly unethical to use this board for trying to solicit business to your site/product. Very disappointing. I only wish this page were better moderated - as I truly believe the ***(removed)*** could help many people and facebook would be a great way to reach out. I truly hope that those that can actually use ***(removed)*** information are able to wade through a lot of the superfluous stuff on this page and can actually find what they are looking for - without being waylaid by the various advertisements others post here for their own profit.

I guess I don't understand some people and the way they think.  To me - what these people are doing is just flat out wrong! In my opinion, this would be just like having Nordstroms advertising INSIDE a Macy's store or circular... I don't understand why people think this is okay.

I was expecting (and still am braced for) a full backlash from those that disagree with me on this particular site - however, with the few messages and supporting comments placed on to the post I left on my way out - I know that others were just as exhausted with that junk as I was... A few people actually took time to write me a note of thanks for pointing out their frustrations publically. 

*sigh*  It's so frustrating that when there is something honest - and good - that others feel the need to jump on board and hijack the discussions and try to make a personal profit from it.

What do you think?