Gilenya outrage...

As with other MS patients I have been eagerly awaiting the availability of Gilenya. I'm sure you've heard of the drug. The new ORAL MS medication approved by the FDA very recently and available this week in the US by prescription. I was very excited, as was my entire family to hear that the FDA finally approved Gilenya. In fact, my sister heard first and send me a text message about 40 minutes after the drug was approved. I was so excited that I picked up the phone and made an appointment with my Neurologist for October 20th to talk to him about it. I had visions of no more needles and Immuran dancing through my head.  


SCREECH went the brakes on that vision as soon as I read the Bloomberg report on the WHOLESALE price Novartis intends to charge for the drug. $4000.00 a month! Thats right..4 THOUSAND dollars PER MONTH. WHAT?!  Hey...I understand the concept of profit and how expensive research is as well as the next guy does, but honestly. $4000.00 per month for a ONCE A DAY pill?!?!?  Thats 133.33 PER PILL PER DAY..and that's the WHOLESALE cost. 


All I can say is SHAME ON YOU Novartis. You have successfully out priced your medication from the very people that need it. Do you REALLY think my HMO is going to authorize Gilenya when it can pay for both my injection AND Immuran for less than $1500.00 per month?? What about the folks that don't have insurance?? Like they can come up with $4000.00 a month WHOLESALE. SHAME ON YOU!!!

Traveling......

I’m actually blogging as we get to cruising altitude on my way to visit my family. Interesting thing this modern technology. Means we can run, but we can’t hide. 

I’m actually feeling pretty good today. Tired from getting up at 3 a.m., but other than that no extreme fatigue today. Of course the travel isn’t over yet. However, I was lucky that my connecting flights weren’t far apart so walking wasn’t too difficult. Letting the airlines know in advance I’m deaf helps a lot as well.

I have to admit, I’m always apprehensive when I travel alone. As if being deaf wasn’t enough, throw MS in an one never knows what to expect on any give day, let alone a travel day. I never know how my body is going to react to the stress. Even if it’s GOOD stress, it’s still stress.

I made an appointment with my Neurologist when I get back to talk to him about the new oral MS drug. I’m already on Imuran so I’m familiar with the side effects of taking an immunosuppressent, I’m convinced it was going on the Imuran that beat my MS back into submission earlier this year.  It’s my understanding that with the new oral med I wouldn’t have to take injections anymore. Wouldn’t that be awesome! A pill a day to keep the MS symptoms away.  What a great stride forward for us MSers. Makes me hopeful that we WILL see a cure someday.

FIRE!!!

O.K. I know were not supposed to yell fire in a crowded room.....but my legs are on FIRE!! One of the worst MS symptoms I have is neuropathy. It makes my legs and often arms, feel like they are on fire. My skin become so sensitive that even the air blowing for the overhead fan hurts.  Nothing seem to help anymore. I usually am pretty successful at ignoring it, but it woke me up several times last night. My feeble attempts at ignoring it weren't successful to say the least.

I am still determined to make today a GOOD day in spite of the pain. Mind over matter, mind over matter is my mantra of the day.

Finally Fall

About time I started blogging again. TIme has simply gotten away from me. Lately it seems like it's everything I can do to just keep up with life's frustrations. Social Security denied me yet again for benefits. Apparently I still have a brain so chronic pain and MS are not reasons to be disabled. Well then what the hell is? Oh and don't forget I'm deaf as well.

As I can no longer work a job on my feet. Heck, I'm lucky I can walk, looks like I have to figure out a way to start a second career. So, back to school I go. Which is going to be very challenging considering I can't hear, nor do I sign. Way to set up for success don't you think?

My MS has been a sleeping giant the past few months. Tossing and turning to let me know it's still there and can awaken at any time. My biggest problem has been the pain in my legs. That "FIRE" pain that screams out with every touch against my skin. I try to ignore it as much as possible. Medications don't seem to work anymore and I haven't found a way to find relief using any natural remedy.

I' still taking the Imuran which, I am convinced, is really what put my MS into sleep mode. I'm walking  with a cane. While I have to be very careful, I'm WALKING! No more chair which is an amazing blessing that this time last year I didn't think I'd be able to say again.

Why bother

My heart just isn't in blogging right now. Hasn't been all summer. I'm hoping it comes back. I miss it...but the well of topics has run dry.

What a week

I have actually been doing pretty well with the MS until last week. My neurologist had put me on Immuran a few months ago and it seemed to beat back the monster. That is, until this week. Suddenly my left leg is weaker and more painful, I'm exhausted with no exertion. The MS hug decided I wasn't getting enough hugs in real life I guess and has re-emerged to make up for it. (Note the sarcastic wit). Then on top of it all I fell. Perfect. Like I need a fall with my back as bad as it is.

So I'm dealing with it all by using my machine and trying to get some extra rest. I know if I called my neuro he'd put me on steroids. They work, but for me the side effects are brutal. So, I'd just as soon avoid them as long as possible.

I'm hoping this is a pseudo exacerbation due to the heat (thats my story and I'm stickin to it)! Of course, it isn't as pseudo exacerbations go away when the irritant is gone. i.e. heat, stress etc.  This has been going on for almost two weeks. So it's a full blown exacerbation. Whoop de do.