BG 12 - TEST GUINEA PIG

 

test guinea pig

 

Wow, so many changes going on in my life in a good way for the most part.  I finally convinced my husband to downsize our NJ residency.  James likes to live glamorously as I did too in the past.  Actually I shouldn't say past as I have this tremendous and beautiful  home in Florida, in which I consider my retirement home - the one that I will die in.  But economically speaking James cant work till he's ninety and when he does decide to retire it will be very difficult to continue his life style when inflation is higher with no income stream. I'm more the hippy type, probably because I grew up with wealth, it never impressed me nor did i ever use it as leverage for my ego.  I like beautiful things-but that being said, they don't need a designer name behind them.  I'm an artist and see beauty in so many fashions.  Being that I have MS, IL be happy just to be able to see the sunrise on the beach, preferably delray, even if its in a wheel chair.  But for now I'm just following the flow of what the universe spits out at me.   One of the biggest changes that occurred this past month is that I've become a district manager for a seriously beneficial health and wellness company.  Something I will touch upon in a later blog, as i don't want my add to get the best of me.

 

Returning to where I begun, this is a moment of change.  A new business, a new , NJ residence, I'm,packing in between my stream of thoughts, and a new  I mean NEW medicine.  That medicine is the BG12, aka tecfidera.  Just recently after my latest MRI's , I was forced in a rush decision to go back to avonex, the drug that in the past showed great promise and security because i got out of it alive.  But perhaps because our body chemistry changes over the years or for some other strange reason, my last experience with avonex had me feeling like a dying cancer patient for 5 days after the shot.  I was weak, I was dizzy, confused mentally and cognitively  I felt as though I was losing brain quality.  It scared me.  Enough to call my doctor by day five and say I CANT TAKE IT anymore.

 

Now getting into the options available to me and with a lot of google activity, i learned that by far the pill forms of ms meds were more significantly effective and tolerable.  But there are attachments that cohere to that statement.  WIth both gilenya and aubagio , certain precautions had to be in play.  Gilenya had a heart risk and required you to stay being monitored in your doctors office on your first dosing.  I recall asking the nurse,"well if my heart does stop while I'm here-then what?' She assured me that I would be revived.  That didn't sit well with me and there were reported deaths from this medicine.  Now looking at aubagio, hmm, constant liver tests due to reported liver failure and hair loss? Nope, Notta, aint doing that.  So then the BG twelve comes into play.  Actually my mother had sent me an article about it over the winter when it still was not available on the market. Apparently no one during test trials died! Now we're talking, more please.  Then the side effects such as flushing, diarrhea and indigestion, well I did a lot of niacin flushing, diahrea- did that from the multivitamins I used to take along side a liver cleanse-doable I suppose. SO whats the catch? The efficacy rate looked promising, not that there is any cure. Google on.....and there's more to learn.

 

Quoted from http://www.ms-uk.org/index.cfm/BG12

 

The active ingredient in a drug that’s expected to become a popular treatment for multiple sclerosis has been linked to four European cases of a rare but sometimes fatal brain disease called progressive multifocal leukoencephalopathy (PML).

The ingredient, dimethyl fumarate, is used in a drug called Fumaderm that was approved in Germany in 1994 to treat the skin condition psoriasis. It is also in a different but closely related medication called Tecfidera, which was just approved by the U.S. Food and Drug Administration in March for the treatment of multiple sclerosis (MS). It is known as a fumaric acid ester, which is commonly used as a food additive and has been used to treat psoriasis in Germany for 30 years.

According to reports published in the April 25 issue of the New England Journal of Medicine, however, four patients who were taking Fumaderm to treat their psoriasis developed PML.

 

Concerned? Yes I am, as this drug was just introduced - are there going to be flare-ups regarding its safety once its ude in the masses? We shall see.

 

On the positive note however the exact ingredient was not directly been proven to be the culprit of pml, they are saying it was a combination that was used in the psoriasis meds.  Secondly, if there are only 4 known deaths, how many is that percentage wide over a twenty year span of multiple users.  Did One million psoriasis sufferers use this.  Because if that's the case then four deaths isnt so scarey as long as mine wont be the next.  Lastly.  These people that died were on the meds for four years.  So after the first year and with the progression of new meds emerging, il probably have another few options by 2014, before the risk factor kicks in. 

 

I spoke to my doctors office today who is sending out the script to Caremark. I asked her if they would do a white blood cell count prior and could I be tested for jvc, which is a precursor dormant virus that is seen in pml patients.  The nurses response to me was" I don't know, we never prescribed this yet, Imo calling Caremark now."  Wow, i am truly the office gunnea pig.  But will i have the courage to swallow these pills when they arrive.  That is yet to be determined.