Tysabri news risk

Common Questions and Answers about Tysabri news risk

tysabri

Avatar f tn Actually the risks in Tysabri are not as great as people talk about. There still is the risk of some serious infections, and they list 1 death in 1000, but the newer statistics are lower than that. That is not a huge risk and it has to be looked at along side the effects of a disease that relentlessly takes more and more from you. I am sooo pleased for you and your post made my whole evening! YIPPPPPPEEEEEE!!!!!!!!! Lori's brain is BETTER!!!!! This is fabulous!
572651 tn?1530999357 Very important news about Tysabri. I have to share this news now, even though I am so tired after my second opinion today with a Neuro. Tysabri WILL be withdrawn from the EU market within the next 6 months. Neuro told me that more people have PML than we know, but he would not give me the figures. It was released to Neuros and Dr's alike on Monday - they were told not to give information out to patients!!!!!! People like me who asked!!!
1831849 tn?1383228392 This was another big Tysabri news story at ECTRIMS - researchers in Germany presented results on a blood test that identifies patients who will be safe on Tysabri, even if they are JC positive. http://bit.
294425 tn?1288528395 This person was previously on Tysabri for 3 years, and was JC positive. There is no information yet as to how long of a wash out period they had before starting Gilenya, how long they were on Gilenya before getting PML, what kind of symptoms they were experiencing, or any info yet about the condition of the patient.
1950519 tn?1324518193 t necessarily have to stop Tysabri at two years, dpeending on what his doctor says and what level of risk he is willing to assume. We have one member here, Cosmobirdy, who just had her 42nd infusion, without a break, and is doing very well. If I were to continue past the two year mark I would be sure that the infusion center is doing a thorough screening each visit. There are interventions that can be done is PML is suspected early enough. Also, has your friend had the JC Virus test?
1045086 tn?1332126422 //www.nationalmssociety.org/news/news-detail/index.aspx?nid=2525 ---------------------------------------------------------- This one is a clinical study being conducted by Biogen to evaluate the effectiveness of Tysabri in people with SPMS. 800 people are being recruited worldwide to participate in a double blind study (meaning some participants will receive Tysabri and some will receive a placebo and you won't be told which group you are in during the study).
1831849 tn?1383228392 Good news for Lemtrada (alemtuzumab). The Peripheral and Central Nervous System Drugs Advisory Committee has recommended that the FDA approve alemtuzumab for the treatment of MS. As with any of our favorite concoctions there are serious risks, but the reduction in relapse rate seems to outweigh them. http://www.medpagetoday.com/Neurology/MultipleSclerosis/42899?
Avatar f tn Make sure that you ask about how they will monitor you JCV status in order to manage your PML risk. After infusion # 18 I converted to JCV +, so I stopped using Tysabri.
216354 tn?1262871346 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.
4848471 tn?1372238752 My ms specialist wanted me to try Tysabri since my MS is so active.Is it worth the risk, is it out of the question? I didn't receive much feedback on how at risk I was, I've never been on MS meds before. I signed up for Tecfidera before I learned there was a PML risk for that drug as well. I really need some guidance here!
294425 tn?1288528395 t monitor as closely as we do. I think if we are on Tysabri, we just have to accept that this is a very real risk, and just be even more vigilant watching for any changes in our physical or mental status. The sooner it is identified, the better your chances are to not have so much permanent damage. I truly feel that as more and more people start to take Tysabri, there will be more and more cases of PML, as well as other serious complications and side effects. It just stands to reason...
Avatar m tn There have since been cases of PML as well as some deaths in patients who were taking only Tysabri at the time. When I started Tysabri in 2008, the estimated risk of PML was 1 in 1000. They knew being JC positive was a risk factor, but there was no test for it at the time. Most estimates I've seen are that approx. 50-60% of ALL people carry the JC virus, as it is actually very common.
572651 tn?1530999357 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.
Avatar f tn 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?
Avatar n tn Use of other immunosuppressants before Tysabri are a risk factor for PML, but this does not refer to the standard first line DMDs. Have you had any side effects in your time on Tysabri? It's great that your MRIs are stable! Have you talked to your neuro about remaining on Tysabri? Everybody is different, so there are a lot of factors that play into a decision to remain on it or stop. there is also the possibility of rebounding when stopping Tysabri that should be taken into account.
488198 tn?1493875092 And even if Tecfidera ultimately was directly connected to PML, know that Tysabri is too, and yet the vast majority of patients use it safely every month. It's something to be aware of, but no reason to throw out the Tecfidera yet. http://www.foxbusiness.
2063887 tn?1337829746 My insurance finally approved Tysabri!! Both neuros recommended it, but we've had issues getting approval. My new one was willing to fight for me. I have my first infusion Monday morning. My son graduates on Wednesday so I'm hoping all goes well!
738075 tn?1330575844 • Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the U.S. FDA and the company have released data suggesting that the risk increases with increasing time on therapy. • The company changed the label of Tysabri to indicate that the risk of PML is increased in patients who have been treated with an immunosuppressant (such as mitoxantrone, and less commonly, azathioprine and methotrexate) prior to receiving Tysabri.
Avatar f tn while on Tysabri. Any news would be appreciated. Also, does anyone report increased fatigue while on Tecfidera? I am over all of the flushing and gastro upset. Just very fatigued - way more than ever before. I am taking Nuvigil and could not make it through the day without it! Be well and try to stay positive everyone.
1831849 tn?1383228392 As I type my 12th Tysabri in fusion is flowing into me! It's hard to believe that it's been a year since my diagnosis. I've learned more about MS and life with a life long disease. I've made a few minor changes to accommodate it, but fortunately my life is largely unchanged. Believe it or not, learning I have MS has explained a lot of seemingly unrelated issues. In that sense my DX came as something of a relief :-) Here's looking forward to 12 more Tysabri juice boxes!
1486292 tn?1291066898 The thing with all medications is you have Benefit and Risk and you have to weigh these things carefully for every individual patient. I know many people who swear by Tysabri and others not willing to take the risk. If the regular drugs will not work or you have a fast progressing case than you might take the risk. Others can get into the more technical aspects of Tysabri there probably is a health page devoted to it.