tysabri use

So far ive noticed my fatigue is worse and my balance is off again but not like it was. Before tysabri I had a cane and walker now I use nothing and would like to keep it that way. I started doinf volunteer work for hospice and love it. I would hate to go back to what I was before tysabri. I am seeing ms specialist dec 31st to see what my options are for dmd. I wont go back to shots and not happy with side effect profile from tec.

So to anyone who is THINKING about Tysabri, this should be your last resource of treatments to use. Also, PLEASE get tested for JCV BEFORE yiou start on Tysabri, and THEN make your decision!!

Hi, has anyone had experience with going on to Tysabri after prolonged usage of Pregnesone or similar. My main concern is the adverse effects listed on various sites regarding the combined usage but there is nothing about the use of Tysabri following extended use of other drugs.

I have a different take on the risk of Tysabri. What I see as a big risk is the near certainly that your mother will go downhill - possibly rapidly - if she stops the Tysabri. Lets call this a 1 in 2 chance or worsening severely. Then you look at the slightly increased risk of PML after more than two years on Tysabri. The initial risk was 1 in 1000 and now it has increased to about 1 in 800 according to her neurologist.

Hello, My doctor wants to put a port in for my Tysabri infusions. Does anyone have a port? Any downside to having a port? It is becoming more difficult to get an IV started because my veins do not hold up even though they look good. Thanks!

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

the original 3 cases of PML were indeed initially considered to be due to the use of Tysabri in conjunction with other treatments for MS, particularly interferon. After being withdrawn from the market, Tysabri was brought back under the TOUCH program (which is strictly controlled by the FDA), and the thought was that if Tysabri was used as a monotherapy, the risk for PML would not be as significant. Unfortunately, this proved not to be the case.

I'm on my 5th year of Tysabri, and have no side effects. Like Kyle mentioned, I do kind of "crash" about 4 days before my next infusion. I was diagnosed RRMS, but I wouldn't be surprised if I were SPMS in this stage of the game. Tysabri is approved for use with patients with SPMS.

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.

Now that i am off of Tysabri for over a month, am getting more pesky symptoms. My foot drag is worse, I do more drunk walks, drop more things, use wrong words more often and last night was up with extreme dizziness and nausea and woke up this morning with a new case of ON. Interestingly enough, they are talking about putting me back on Tysabri, I had no antibodies to it (tests are back) and still am having the GI problems. The current theory is that MS is causing the GI problems.

It only sometimes becomes a problem when the immune system is compromised for some reason, thus allowing the virus to be re-activated. Prior to Tysabri use becoming more common, most cases of PML were seen in AIDS patients. There are a few other meds that have seen associated cases of PML also. The JC virus test was developed as part of a clinical trial to hopefully gather enough information from many people to be able to help stratify the risk for PML when on Tysabri.

t know numbers yet, as nurse wants Neuro to tell me) There was apparently a note on my file that if it was positive that I was not to go on Tysabri. We never discussed this with her, and if the numbers are high of course I would not try it. , but, I know of people who are positive and low numbers and have done very well on Tysabri. I just want o give it a shot. I have to wait now till Wed. when my neuro is in and the nurse will chat with her as to what to do.

I finally figured out that the Copaxone was causing me to have severe migraines so we had to change our plan of action. They wanted me to decide which way to go, but sort of led the discussion towards Tysabri. My original neurologist wanted to start with that as well, but after appealing to the insurance several times they wouldn't approve it. This doctor actually took the time to talk and write down facts about my situation to back up the need.

This release last week announced that Tysabri is now in Phase 3 studies for use in treating SPMS. That has to be good news for anyone following the ASCEND trial. You can read the details at - http://www.biogenidec.com/PRESS_RELEASE_DETAILS.aspx?ID=5981&ReqId=1653040#.TyFoJl4mTgY.

You would not be on two DMDs at the same time, especially not with Tysabri. Previous DMD use has to be stopped and there is a washout period of at least 30 days before you can begin Tysabri. If the neurologist doesn't require a washout period, get out of there and go to someone who knows what they are doing. If you choose to go off of Tysabri, there is going to be another washout period. The recommended length for Tysabri to gilenya, is about 4 months.

relapse/flair, whatever. It was 9 days of no fun. They even refused my Tysabri last week because I had a fever of 99.0. Am still on antibiotics for a UTI that I didn't know I had, which I think was really cystitis. Anyway, I have 3 more days of Ciptro and Tysabri is tomorrow. Will make sure I take aspirin to keep any fever down. I've been 6 weeks off Tysabri now.

There have been major debates over the last few weeks regarding the use of Tysabri. Biogen originally said that there were 43k+ patients using the drug, and now they have said that it is 60K+ They are now talking about taking a ‘holiday’ from the drug for people who have been on the drug for over 20 IV’s My Son who is a Dr of Chemistry wrote a report for me, which is posted in my journal. He works for GSK, and has access to many factors.

Common Questions and Answers about Tysabri use

tysabri