tysabri infusion treatment

After waiting for insurance to approve and waiting for rebif to clean out of my body I had my first tysabri infusion on June 3rd, 2014. By the next day I could tell that it was easier to get up and my balance seemed better. I didn't notice anything else but was excited about what improvements I would have in the future. I felt the same after infusion #2 but was hoping for more. After my third infusion I had a bad headache for 2 days and didn't feel any improvements.

Hope everyone is well. I just wanted to give an update. I had my first Tysabri infusion this morning and I experienced no side effects so far at all. Over the last 2 months I have had some improvment. I still have all my symptoms but they're less intense. So here's hoping for the best. Hoping this medication works at seriously slowing this beast way down. How are things with everyone? I truly hope everyone has been well or well as can be expected.

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 have been on tysabri for about ten months or so. The only side effect I had was extreme tiredness for about a week and feeling a bit on edge. That usually passed in the first day or two. I was only really tired the first two or three times. I haven't had a relapse since starting it and it has been the onlly medicine to work for me. So I am very happy with it.

I will be having my fourth Tysabri infusion on Monday. I have been keeping a journal ...It is called "Hoping for a Miracle"...lol...At any rate, I had my first infusion a bit too late and landed in the hospital for thirty days. The day I was released I had my second. Now infusion two and three seemed to give me three weeks of great hope.

Next month will be my 8th infusion. It does take about 6 months to get the full effects of Tysabri. I was very concerned about PML & have followed it much. The earliest PML happened was at 8 months for a person using it for Crohns, before it was pulled from the market in 2005. The latest case was after 26 infusions in 2008. I thought I will just start it & not worry about it until I get to that 8 month and decide then.

Hi Kat - I will get my 11th infusion in about 10 days. I have had no issues of any kind in conjunction with Tysabri. From the follow up MRI's I've had Tysabri seems to be doing the trick. No new lesions or relapses since I started. You will be tested for the JC virus prior to starting.

Hello all, It just suddenly occurred to me that I hadn't logged in here for ages so I thought I'd see how everybody is getting on. Also, for those of you who knew I was not on a treatment for a long time, I have started Tysabri! My second infusion is on Thursday & I'm daring to feel very positive. I was very surprised by the first infusion.

Thanks guys! I will bounce it off of my neuro in May then and ask him to line me up. I'm back to looking for a new infusion center and have missed my January infusion. So, I'm ok in the summer but in the winter, its heck to settle new infusion sites, takes at least a couple weeks, at least around here! I could live with flushing and a upset stomach, I get the upset stomach anyway!

Hopefully it is something else, and not really the Tysabri. Has this happened every time you have had an infusion? You mentioned you were on antibiotics - if you've been sick or had an infection of some sort, that could definitely be a big part of how you are feeling. I know the longer I'm on Tysabri, it seems I get sick easier - and when I do, it hits harder and lasts longer than it used to.

From your question I am not sure if you are talking about the cost of the Tysabri or the cost of the infusion center (or wherever you get your monthly IV's done). Have you talked to the BioGen folks about assistance with this cost? You could also maybe apply to NORD, but I understand that is a time consuming process. Before you make a final decision, please go to your neurologist and have this discussion with your doctor.

Over the last 12 years he has been on all the ABC drugs. Now he is completing the 2 year mark of using Tysabri. Dr Appointment in 2 weeks assume he will stop infusions. I wonder what is next???? How are others doing after all these treatment and now what do they take???

They may not let you take Tysabri because of your cancer treatment drugs, because they always ask me that question before giving it to me. So check with your doctor on that one.

The fatigue may not be the result of the Tysabri itself, but the result of your particular disease course. Tysabri is not, at present, a typical first line treatment, so is it correct to assume your MS and test results pointed to a more aggressive approach being warranted? It can take a few months to separate disease activity from treatment side-effects unless its something obvious like Copaxone welts.

Hi DH - Welcome to our group. I am currently getting Rituxan (rituxmab) and before this I was on Tysabri. They are the only two DMDs I've been on. I have had good experience with both meds. Tysabri lasted about 20 infusions before it stopped working. The Rituxan seems to be doing the job now. I started Rituxan in November of last year and finished my second round yesterday. I had no adverse reaction of any kind to either med.

My neurologist told me that after the first infusion I would feel good and then the closer it got to the end of the month I would feel bad again. She after the third infusion I would have a level amount of Tysabri in my blood. I guess she was right because I don't feel sick any more after the infusion....just very sleepy. Hang in there and remember there are alot of people praying for you. Keep us updated on your prgress.

I have been on Tysabri for 7 months and after I had mt first infusion......things started to work again! The closer it got to the second treatment things started to come back, My neurologist said I needed three months of medication to build up a steady level in my blood. I have tried all the other medication and failed them, so having a once a month infusion at the Oncology clinic is great. I am not sick after the treatments, just really tired. The next day I am fine.

He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!

Tysabri infusion treatment

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