tysabri vision

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.

I was placed om Tysabri as my first drug, he was unwilling to consider anything else and my s/s were minimal which i won't outline, I believe its the neuro's choice, just my input

Finally! My new Neuro actually said she is convinced that I have MS. She says my legs are spastic on exam, my gait is completely out of whack and combined with the MRI and my complaints, it all fits. She thinks I may have had RRMS for 20 years. In the mid 80's I had a sudden vision change (from 20/75 to 20/400) in a matter of a couple of years, thought I just had crappy vision :). Anyway, I have had odd "episodes" off and on since then.

My neurologist says I have a lesion on my brain stem that is affecting my path of vision. It is very hard to explain my vision problem. I have given up my driver's license because I don't feel comfortable driving. Multiple vision field tests show complete black areas. My "real" problem is the way I feel. Rainy days are miserable. I feel dizzy almost 100% of the time.

OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :) He explained alot about Tysabri - truth vs hype.

Immi has given you valuable insight. There are cases in which the initial diagnosis is Secondary Progressive Multiple Sclerosis (SPMS). I am one of these cases. GIven the length of time I'd had MS when I was diagnosed my doctor determined I had moved into Phase 2 of MS, SPMS. At that time he also told me I was likely beyond the help of first line treatments like Copaxone. He suggested TYsabri and I agreed. Tysabri is safe.

Anyway, here is my ? I have been in a relapse for awhile. Doing worse on the neuro exan, double vision, decreased hearing in my right ear, on and on. The short story is I am going to stop Copaxone, and my 2 "choices" at this point are going to be Tysabri or Gilenya. Both sound awful. Details later, this is not what this post is about. I "agreed" to a course of Solumedrol this past Thursday. Home Health care is supposed to start coming tomorrow.

I was offered Gilenya when I had problems with Tysabri (which turned out to be something other than Tysabri that caused it) and after reading the cardiac warnings and other side effects, chose not to take it. Tysabri has a wonderful financial support program. They fully donated my first 4 months of Tysabri until I could get an insurance program in place. Tysabri is considered an "outpatient" procedure and under my insurance, is paid for now at 100%.

Burbandude started another flair-up this Monday. He has blurred vision and balance issues. We raced off to see his neuro who was not pleased that he was having another attack only 6 months after beginning treatment with Avonex. His recent MRI from last week showed "significant improvement" lots of the lesions he had were not visible and the ones that are were much lighter than his first MRI. And he only had 1 new very small enhancing lesion...

Hey All! New here to posting, but have been reading quite a bit! Great info! My question is, I had a relapse over the summer, major numbness/weakness on my right side, pain (allydonia) all over, my arm felt cold when it wasn't, major sensory issues. This eventually resolved with the help of Soulmedrol and time. This was my 3rd relapse in a year and a half, so my doc started me on Tysabri in the fall. I have had 5 infusions so far.

That's horrible to live with that feeling! The burning parethesias can cause pure agony. I'm happy to hear that it has lessened for you. The ON I think I've had for a while but diagnosed only on Thursday. The doctor talked about putting a prism in my glasses to help correct the double vision. My pupils look much better today--only a slight difference (I no longer look like Cat Woman at least). My vision is about the same.

Do you know why your doctor wants to start you on Tysabri rather than one of the more first-line treatments?Tysabri is usually used when less 'extreme' measures haven't worked, or when secondary progressive MS is pretty clearly evident. Not saying that is how things work on paper, but in the real world most often T is considered only after other treatments have seemed to be ineffective.

Recently I've been having all sorts of muscle cramps in my legs and lots of spasticity in my hips. I've read that it can be a side effect of Tysabri. I've been really careful about my diet and supplements to make sure I'm getting the nutrition I need. I've also been stretching like crazy and sometimes it helps, but sometimes it causes the muscles to cramp immediately.

They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

Hi everybody, I haven't been online recently because I've had my first period of time without any symptoms other than blurred vision. It's been sooooo lovely and I've made the most of it as it's sure to change! I thought I would just check in and say hi though and see how you guys are all doing? Oh my other reason for posting is to say I am STILL waiting to start copaxone despite seeing the neuro back in early May!

My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?

HOLY SCHMOLEY!!!!!!!!!!! Heaven sent, lady! So happy for you - you needed this - you deserved this - it best stay for awhile or else! One for the bank! Woot -woot!

Common Questions and Answers about Tysabri vision

tysabri