Considering Tysabri

[Calliesue]

I am a 60-year-old female diagnosed with MS 8 years ago. My doctor advises I begin Tysabri.  Anyone out there on that drug?  I would appreciate your comments.

[HVAC]

Is your doctor a neurologist? Only a neurologist can diagnose MS. A lot depends on your neurological exam. That is reflexes, following the finger, pushing and pulling on legs and arms and walking, and balancing. Any doctor can do that. If it is normal you do not need a MRI. Have you had a MRI. The MS drugs can have side effects and are really expensive so they want to make sure. They go from $20,000 up to $60,000 and month with out insurance. That is why insurance companies want to make sure it is MS. For many of us it takes years to get a diagnosis. The neurologist usually follows you over six month periods. Not all neurologists specialize in MS so you need to make sure you have one that does.

Alex

[FernTree04]

Hi, thank you for your answer and your time. Yes, my doctor is a neurologist. She checked my responses, she said they are ok, nevertheless I had a MRI and I have a demyelination lesion of    My c2 part of spinal chord. So, there is a clinical find, but she still thinks it is nothing. So frustrating. And scary. Do not know if I should ask for second opinion with someone else. Regards Bea

[FernTree04]

Hi, I like your informed answers. Recently I have been told to have c2 lesion on my spinal cord. One so far but only top of my spine was tested. I am 55 yo. It was accidental finding. Then I was told I have scant enhancements on white matter of the brain related to degeneration and possibly high blood pressure and high cholesterol, which I have. Doctor says no MS but I am worried , because she dismissed any symptoms I tried to point to her which I had in the past. Almost brushing me off. I have occasional numbness in my arms, mostly left one. Comes and goes away. I have bit of a uncontrolled movement in my leg and hand when resting. I can stop it if I notice it. I have this kind of gentle jerks. It is something like restless leg syndrome. It happens to my hand too. 20 Years ago I had the episode of sudden loss of balance and vertigo which lasted 3 days. And never returned. I had some double vision problem and then it is gone, although my vision gone little bad. No glasses needed unles I have to thread the needle. I am worried, I could possibly benefit from some Meds if I was diagnosed but my doctor dismisses my worries. I am bit disappointed and scared that in one year she wants to see me, something irrevocable might happen while my doctor trivialises it now. I am mostly healthy and do not see doctors often. I had some tinnitus long time ago, now very minor, unnoticeable almost. I had one fall, like micro loss of consciousness, for 1 second or so. 15 years ago I had an episode of not knowing where I left my car. It is almost like I had MS for years and did not know it. Is it possible? If you find time to write to me I will really appreciate. Bea

[hoopsk]

I've been on Tysabri for 6 years now. Very positive on it (was Avonex before, not nearly that good then.   Do I still have problems - Yes, I do have MS after all, but a lot better than it was!  MRI's showing no worsening progression / and my Dr does them every 6 monthes as part of the monitoring process.  Also, no "major" attacks for years ; had 2 partial paralysis incidents years ago among other things.  But not since I switched to Tysabri .

[Lulu54]

I'll be 60 this year and started Tysabri in January 2011.  I continue to test JC negative and love having to do only one treatment per month.  My MRI remains stable but I have had the slow, silent slide in symptoms that is discouraging.  I believe i am on the best drug for me at this time.

[SarahL2491]

72 and I've  been on Tysabri for two years also, love it……and I've been JC+ since before starting it……..Just went this morning for my July infusion.  It was my first DMD drug.

[Calliesue]

Quix, your note was very helpful, thank you. I also really enjoyed the photos on your profile of your cats. I am a cat lover as well!

[Quixotic1]

Hi, and welcome.  I am 62 and have been on Tysabri  for over 2 years.  I have one significant and wonderful side effect.  I get a real boost od energy shortly after my infusion which lasts almost three weeks.  The energy is both physical and mental.  My neuro, who is a Tysabri and Avonex researcher says that about 50%  of his Tysabri patients report something similar.  I have had NO bad side effects.  The main factor affecting the sole worrisome problem is whether or not you are positive for the JC virus.  As long as you are negative there is only an infinitesimal chance of it.

I have had only minor progression of one problem (appearance of pain in my face) and several brain lesions have shrunk or disappeared..

I was on Avonex before and had unacceptable depression.  Tysabri is way better!

Hope this helps.

Quix, MD

[Calliesue]

Thank you,Kyle. I appreciate your response.

[kwarendorf]

Hi Calliesue -  Welcome to our group.

I had 20 infusions worth of Tysabri. I swited to Rituxan because it stopped working for me. While I was getting Tysabri I had no ill effects what so ever. I loved the 'convenience' of monthly  infusions v. daily or weekly injections. There are many folks here who have been gatting Tysabri for years with good results.

Kyle