Officially done with Tysabri :(

[michelleric]

Well, MS neuro called today, and said no more Tysabri.  I have had 5 infusions so far, and unfortunately have been dealing with an awful vocal box issue(s). From having my immune system lowered, I developed a terrible problem with my vocal chords.  It was so bad when they 1st looked, they had a hard time differentiating what was going on.  There was thrush, ulcers. lesions and huge amounts of swelling.  I have not had ANY voice for over 3 weeks!

I was also not allowed to try to talk either.  I carried/carry a dry erase board everywhere. Extremely frustrating.  Went for follow up today, which was booked with my ENT and his partner who specializes in "something". I dont even know what, I am feeling too crappy to pay attention.

I am doing better though, thank goodness. I have been on steroids and 2 other meds to try to "fix" this.  So, today, I am 50% healed and got some voice back 3 days ago.  Although he told me to still be very careful about not talking too much,.( if you know me, you know that I am quite a talker, so this has been very hard for me, literally.)  Been pretty down and out these days.

So, the thrush is gone, and the ulcers, which are healing are a herpes virus, most likely.  Last week, they were going to do a biopsy, but because I look better, they are foregoing it.

So, thats the story.  I really am bummed about stopping the Tysabri, but it is not working out for me.  Also from being sick now, I am having lots of tingling, numb areas all over. I just hope and pray this doesnt turn into some ugly relapse.

Seems like it is always something with me...

Tomorrow will be a better day, I know.

Michelle

I am disappointed because I was really seeing a positive difference in my MS symptoms. I really do wish I was able to have stayed on.

I saw the ENT again today, and will see him in about 6 weeks. After that visit, I need to make appt with MS neuro to figure out the next step.

[Guitar_grrrl]

Aww, I'm sorry the Ty didn't work out for you.  Maybe Gilenya?

Here's to the speedy return of your voice...

[kathiatkins]

I started Tysabri last month, have had one infusion and I am dealing with Thrush that just won't go away, despite medicine, baking soda gargles etc. I have a really scratchy voice, and this all started about a week after the infusion. The last time I had Thrush was when I was on steroids and then started Rebif. I couldn't take the Rebif. I am not sure what to do. Reading your story kinda scares me. I am definitely going to be vigilante. I go for my next infusion on the 30th.

[Tammy826]

So sorry!!! sending big (((HUGS))) your way & also my prayers!!

[michelleric]

Thank you all.  I really liked Tysabri, was doing really well on it. Well expect the unexpected is my motto.  Things can change in an instant.

Mary, thanks for K.D. Lang.  You know its my favorite!

So, basically is sux, but can always be so much worse.  See just when you think its bad, you break your toe and something else to think about.

I am off to bed, hope I can get up the stairs ok. I would hate a disaster to happen, and it is certainly possible. Falling backwards, railing coming off, who knows what lies ahead.

Good night all, and thanks for lifting my spirits

[anon07072023]

I'm sorry that the Tysabri didn't work out because it lowered your immune system too much.  When you find something that finally seems to be working, but then it screws up something else.  I am glad that the things that it has caused are starting to clear up.  You must have felt miserable with all that going on in your throat - plus you couldn't talk.  

I hope that they can find something else for you that works just as good as Tysabri.  

Mary, I really like her version of Hallelujah.

Take care,
Kelly  

[rendean]

Michele,

I am so sorry to hear about the discontinuation of Tysabri :(  . Glad to hear your vocal cords are healing! You SO need a break! Ditto the Rosanna Danna quote.

You remain in my thoughts and am sending good vibes to you!!

Hugs to you for enduring all of these complications.

Ren

[tingletingle]

Michelle,
I am so sorry for what you are going through and am thinking of you. Take care

Blessings
Alex

[Ufrustrated2]

too bad the tysabri didn't work out. some folks in our groups here have had great results. like you though, some had to stop it for other weird issues/reactions.

i get the ulcers/sores in my mouth ever since my MS started. have no idea why they showed up. one doc said it could be due to my gastro issues. VA gives me a herpe medicine to take for 5 days when they show up. i get em so often yearly, beats me.

sorry it didn't work out and here's hoping something does, and soon. you deserve a break!

[Starryeyes2]

Healing thoughts coming your way!
Take care of yourself!

Hugs
Kristi

[HVAC]

man I am sorry. You of all people need a break. As Rosanna Danna Danna said if it ain't one thing it is another. Take care.

Alex

[twopack]

For you Michelle.  Maybe you need to hear this?

http://www.youtube.com/watch?v=P_NpxTWbovE&feature=BFp&list=FLJEE7k01_MTPxAkuZi13Ovg



As Cohen said,  "All the perfect and broken Hallelujahs have an equal value."

Love ya friend,
Mary

[Lulu54]

Michelle, all I can offer here is hugs.  ~ L

[Jifr]

Wow.  I am glad they figured out what was going on with you and I'm glad that recovery is in your future!

Have they decided what treatment they are going to put you on once the Tysabri washes out?