My Seizure Medicine Has Been Recalled

[Wafers]

Hi Jill,

Thanks for the info... I am cleaning out my room and my car because sometimes I would stick emergency wafers in random places!!!!

Let's hope they get this show on the road and start producing wafers again asap!!!!!

Hope everything works out ok with you.

Peace + Hope
Emily

 

[Shutterbabe]

To Emily

I did a search for extra Klonopin myself as I keep them everywhere: purses, car, briefcase, bedside, these little strange stashes everywhere. It was like winning the lottery when I unearthed a few packets in odd places. Wafer madness!

I feel badly for anyone that is in the same situation with any medication that offers them stability and well being.

I will keep in touch, Emily. The lady at Hoffman-LaRoche feels very involved with my plight. We connected on a human level and I feel if nothing else, she will keep me informed.

Sending you blessings,
Jill

 

[Wafers]

Hey Jill,

Oh man your post made me laugh. My family has thought I've been going crazy the past couple days, I've been running around rummaging through everything I own. Wafer madness indeed!

I talked to some lady at Roche on Monday, and she said something about the FDA getting involved to reach some sort of resolution with the manufacturers, or something, but she was unable to give any idea of a time frame. She was really nice.

I plan on calling them once a week to find out if they have any idea when they'll be making them again!

Hope you are feeling good and maintaining your stability... it's hard you know, I feel like I worked really hard to get to this point (feeling good and healthy), and it's just kind of scary when something suddenly comes up like this.

But I think the wafers will be coming again soon!!!!! That's what I'm hoping. I also hope you are doing well.

Sending you blessings too,
hope you're having a nice week,
Emily

 

[Shutterbabe]

Wafer Madness Part II

Hi Emily,

I am glad that you spoke to someone at Hoffman La Roche. I think they need to know how much this affects people like us. They have continued to phone me every Monday with an update, without my prompting. It is impressive. One supervisor actually gave me her vacation dates and designated an assistant to keep me in the loop during her absence.

So as you already know, there is no release date coming soon.

Here is my Wafer Madness, Part II: I was moving my furniture on Monday out of storage. Everything had been tucked away since last November. When I went through my night tables, I found one lonely wafer which had expired 18 months ago. It was like seeing an old friend. I tucked it tenderly in my pocket anyway knowing I would never use it.

Please stay healthy. I am doing well (edging towards the 16 month mark) and plan to stay that way. Positive thinking, living in love, and working towards my own heart goals.

Keep in touch, please.

Peace to you,
Jill

 

[Wafers]

wafer devastation

Hey Jill,

Talked to Roche this morning. After over a month of their promises that it would be back in production soon, this morning I learned that our wafers have been discontinued. I actually started to cry a little, and I was at work, I work on the trading floor at the stock exchange, so I had to go hide.

I had a six year daily relationship with those wafers, what can I say? I mix and match with the generic wafers and bits of the brand name tablets, but nothing is the same. I'm bummed out and scared, it makes me worry about what might happen with my other medications, like Lamictal.

Your last post touched me, I read it after a long day of moving all my furniture, unpacking everything in storage - the same exact thing as you. I have wondered from time to time how you are doing, I hope you are feeling healthy and well and having a great summer.

The reason I loved those wafers so much is that they never made me feel "spacey" or "tired" or "out of it" (not sure why I put those in quotes but...). Like I said I work at the stock exchange so I really have to be on my game at all times. I have been in remission since late 2007... and have been feeling like my old self again before I ever got sick.

I'm very angry at Roche, but in reality I just want those wafers back. I'm going to get klonopin syrup made for me this month by one of those old fashioned pharmacists to see if that helps stave off the tiredness and spacey feeling.

Sorry for venting...
I know you loved those wafers too, and that you might be the only person who understands how it is to have them gone.
I hope you are well. Let me know how everything is if you get a chance.

Hope and Love
Emily

 

[Shutterbabe]

Dear Emily,

I have thought of you often as well. I have been remiss in contacting you again just to check in and see how goes life.

I learned the news about our wafers from a H-LaRoche manager last Friday, who was giving me updates weekly since the "recall". She was very compassionate about me losing a valued medicine for my E. However, she also told me that there was a business merger going on with H-LaR and another pharmaceutical company who decided not to continue carrying the wafers but are committed to keeping the oral Klonopin available.

Makes one wonder, yes?????

I can echo everything you are saying, feeling about this situation. I am at an unknown place right now until I see my physician next month. I still have my stash but it will not last much longer.

My work/personal life has been quite stressful lately and this puts me at high risk, as you well know. I am still seizure-free but feeling some kinks in the machinery.

I hope you do well with the liquid replacement for the wafers. Please do let me know, ok? I truly care.

In Sisterhood,
Jill