Tysabri

Hi. So here I am back to "real life" - the honeymoon is over and now I have to get back to addressing the biggest topic on my mind - my MS and continuing leg spasicity, leg weakness and pain. Before we went to Jamaica my Neuro had decided that since Rebif didn't work for me I should start Tysabri. WOW, Do you want to try another med first before I try something that has to be infused to me at a Cancer Center? Really?. I didn't argue at the time, I told him I would research it and get back to him. I had more important marriage issues on my mind and my fiance was jobless at that time.

So, today I go through 2 weeks of mail and see that my local cancer center has set me up with my first infusion on December 3rd. WHAT?! I got NO phone call about any of this and December 3rd is THIS Wednesday. I was notified by MAIL?! I pretty much decided that I would be calling them to tell them I haven't even decided if Tysabri was the option I wanted to pursue.

Tonight, my new hubby and I decide to view the Tysabri DVD and see what it says. We did not even get through 1/2 of it and he paused it turned to me and said, Yeah, you're not doing this. I emphatically agreed. For me/us, the risks out weigh the reward. The video even says Tysabri is recommended for those patients who have not found success with one of the other MS Therapies. In other words, use this when all else fails. Well, I haven't even tried ALL the other MS Therapies. Yes Rebif did not work. And Avonex I am allergic too and I've had some really bad site reactions to Copaxone (though not stopping me from taking it), but I've not tried Betaseron yet and may prefer to deal with my Copaxone issues before taking Tysabri.

I'm not saying Tysabri doesn't work, it must do something otherwise why would it be an option. However, they even state in the video that they've only done 2 years of research. 2 years...that's it?! and the "Common" side effects are crazy - Lung Infection, UTI's, Vaginitis, Joint and Extremity Pain, Fatigue etc...So hubby turns to me as says let me get this straight this drug under "common" conditions will give you problems or symptoms you already have and want to get rid of? I know this sounds very negative towards Tysabri. It's not meant to. I was just shocked at how quickly my Neuro went here without even trying something else first and I was also a bit surprised how fast they approved this for use with MS - now for all I know there may have only been 2 year studies on the other therapies too. The difference is the side effects and well there is the risk of PML and Death with Tysabri - can't say I've heard that one before when watching these videos and researching Therapies.

Bottom line is tonight I decided, Tysabri, is not for me....yet.

As they say in Jamaica - Yeah Mon!

While in Jamaica - Trip Details and Photos
Wedding & Honeymoon - November 2008
Negril, Jamaica

While in Jamaica - I got Married (by a Jamaican minister) - here are a few photos - for more see the Flicker Photos in the sidebar to the Right ===========>



While in Jamaica - I took Wedding Photos after the Ceremony -





And then we napped.....



While in Jamaica - I wore my new husbands hat that was made that day out of Palm. Too bad I don't have a close up of it!


While in Jamaica - We celebrated our Wedding/Vacation with friends. This picture was taken at Rick's Cafe (more info below).



While in Jamaica - I had my picture taken with this Rastafarian. However that pic did not turn out well, but this one did.



While in Jamaica - I saw this sign for the restrooms at Rick's Cafe.... Yeah Mon!


While in Jamaica - We took this picture while sitting around the Bonfire (see pic below) - I can't express how large this Bonfire was - at least 50 chairs around it. And took 2 gallons of gasoline to light.



While in Jamaica - We found the "secret" hammock that was tucked away in the tropical plants and trees on a secluded area of the resort. We spent a few hours here cuddling and relaxing.



While in Jamaica - We went to Rick's Cafe - 1 of the TOP 10 Bars in the WORLD to go to (Because of the view from the cliffs & amazing sunsets) - also 1 of the 1000 places you need to see before your die - at least according to the BOOK. Whew...only 999 to go! hehe



While in Jamaica - I floated in Azure Blue Waters (This was the view from my room) -




While in Jamaica - I had a couples massage in this fabulous Treehouse -


While in Jamaica - I ate their fabulous cuisine -


While in Jamaica - I swam in the cool pretty Pool with a swim up bar and a waterfall -

Wedding

Hi Everyone - Wedding Pics and details coming soon...here is one of my favorites -

I'm Off!

I'm done thinking about MS for at least the next 2 weeks! I am off to Jamaica to get married and then to visit family for the Thanksgiving Holiday! Everyone eat lots of Turkey and the fixin's and enjoy the football games - GO EAGLES! :)

Quality of Life

My latest flareup started in July - I could not move off the couch for months. Then I got better briefly to the point I could walk my dog like 1/2 mile. And now I can't walk far again. So then a few weeks ago I shot myself with the 3 week of the Titration pack of Rebif - so I was on only 50% of the full dose and I was out of my mind with anxiety. I swore I would never shoot myself with that again. As it is I load myself up with anti-anxiety meds daily. I'd have to be so drugged up via IV to take Rebif ever again and the big question is - What Quality Of Life Is That?!

As it is I take so much Baclofen and Neurontin every day that I am zonked out. I am either dizzy, tired, feeling loopy, can't look at a computer screen or the tv or all of the above just from those meds - and still the pain in my legs is not under control. So again I ask myself - What Quality Of Life Is This?!

I realize I have no choice on the pain meds if I don't want my legs to spasm like crazy and be in excruciating pain. But man alive. How am I suppose to work? I can't. I can't think, I can't always look at the tv/computer, sometimes I just have to sleep to get the pain to stop and my mind to calm down from overload. And these people want me to take more interferons?! I can't. My neuro told me that Copaxone does not work on Spinal MS as well as the interferons - has anyone else ever heard this? My body just can't seem to handle them without driving me insane. I'm already on an anti-depressant and emergency anxiety pills to hold it together daily - why would I want to shoot myself with something that makes me nuts for lack of a better term? I want to walk - I do - but I cannot handle that huge dose of interferons. Does anyone else have moderate spinal ms and trouble walking and is on DMD's? What did your doc recommend?

Because right now my quality of life sucks and I have to figure out how to stop this disease, walk and stop the pain....sans interferons.

Random Stuff

- I hate PMS, I get it bad and I am an emotional wreck for like 5 days before my period. My Fiance has to deal with my mood swings as well - I feel sorry for him.

- Why is it that some people you know just have all the luck. Like there is always a ray of light shining upon their life and hardly anything ever goes wrong with them, for them, to them and yet some of us have it so tough?!

- I'm really worried about my fiance finding a job again in this economy.

- Ever just feel like life has become stagnant and you need a change, but, not sure what that change is?

- MS makes me feel even more stagnant because I want to try to fit allot of living into each year that I can. I'm also mad I have this disease lately. Like I am going through the angry phase all over again.

- I believe that alcohol causes inflammation inside my body and noticed that last Friday night after 2 rum and cokes, I was in SO much pain and could barely walk for 4 days after. I've given up alcohol (except the sip I will take when toasting my wedding in a few weeks).

- I wish my faith in God were stronger than it is.

- I wish my faith in People were stronger than it is.

- Oh heck, I just lack faith all around lately.

- I started going to a chiropractor this week, we'll see if he can do anything for me. I've been to one before and loved it - helped me so much in the past, but this one is a youngin' and can't seem to adjust me just right yet. Like little red riding hood, I may have to try out a few Chiro tables to find one that is just right.

- I'm having a pity party for myself today...damn hormones and I wish my period would get here already! My wedding is 11 days away!