Natalizumab for Multiple Sclerosis User Reviews (Page 2)

• K9P...
• Taken for 1 to 2 years
• September 20, 2013

"I was diagnosed in June 22, 2012. Started Tysabri August 2012. I have never taken any other disease-modifying medicines. I am JC negative. MRI in July 2013 shows no new lesions, no active lesions. I have never had a side effect from Tysabri. When I was diagnosed, my right leg shook so badly, I could barely walk. I have drop foot and weakened thigh and hip flexor muscles. These symptoms have improved slightly. I do not know if it is due to Tysabri or just how my MS is presenting. I chose Tysabri because I fall into the optimum category...no other meds and JC neg."

• Yup...
• Taken for 1 to 6 months
• April 1, 2019

"The worst drug on the planet. After getting one infusion, I started limping. After the second infusion, I had to rest and lean against something after walking less than a block. I started having suicidal thoughts, and my father has me on daily check-ins. This medicine is the worst thing I’ve done. I will never trust a doctor that suggests this drug and doesn’t believe my experience after several witnesses have commented upon my poor physical ability."

• Anonymous
• September 7, 2011

"Tysabri has changed my life. I have had 20 infusions now. At first, I could feel a major 'up' and then could slowly feel the medicine wearing off towards the end of the 28-day cycle. Now, I don't feel much of an up or a down, but I feel consistent and 'normal' again. I feel more level-headed, have consistent energy levels, and am able to work out at the gym two hours a day! The only side effect I've ever had was a bad headache on the evening of my infusion for the first 2 or 3 months. At my 6-month MRI/follow-up, we found out that the Tysabri was actually causing a significant reduction in my lesions. I haven't had a relapse and only a handful of flare-ups (that last maybe an hour tops)."

• Aur...
• Taken for 1 to 6 months
• May 14, 2015

"I just had my 4th infusion. Since the previous one and this past one, I have been extremely fatigued. I can't seem to do anything for any period of time. I have trouble sleeping due to a strange feeling I get in my chest (feels like my pulse is jumping out of my chest, no pain, just a very weird feeling). I was hoping this Tysabri was going to help me, but it hasn't. :("

• mse...
• Taken for 5 to 10 years
• June 1, 2015

"Tysabri has been a lifesaver for me. I have been on it since 2009, and it's now 2015. I was diagnosed in 2004. We can count back now to when my symptoms started in 1st grade, so it has taken me a long time to get it under control. I've been through lots, if not all, of the medications, nothing worked but Tysabri. My lesions on my brain are beginning to shrink."

• Bek...
• October 19, 2013

"Just took my first dose of Tysabri on 10-18-2013. Copaxone stopped working after 5 years, Rebif did nothing to help. I tested positive for JC in February, then another doctor tested me in August and it was negative. So a third test showed inconclusive in Sept. Since I was on the decline, I decided to take the infusion. I am 49 and want to live another 49 years. No real problems but my nerves. Slight itching the next morning and sore stomach. A lot fewer side effects than Rebif for sure! I worry about PML, but I cannot change it. Praying for the best."

• LIF...
• August 6, 2011

"I have had multiple sclerosis for 12 years. Been on every medicine, steroids, and the list goes on. 1 dose of tysabri. I'm walking 50% of the time without my walker (which I was using 100% of the time for the last 2 years). My mental and my balance have made a great recovery. I can't wait for my second dose!"

• Ian...
• June 22, 2010

"My wife was diagnosed with Multiple Sclerosis 2 months after I asked her to marry me, at age 19. Her symptoms were pretty bad. She was on Copaxone for over a year. It really didn't do anything for her. Then she went to a few more doctors who all said she had an aggressive case of MS. Her new doctor put her on Tysabri. She did very well after a couple of months. She never had a serious setback. Then when we found out she was pregnant, she went off her infusions. After our baby was born 7 weeks later, she had the most aggressive setback with her MS. She couldn't even hold our son. She decided to stop breastfeeding and go back on Tysabri infusions. Three weeks later, she was able to hold him and is doing a little better each week."

• Rod...
• Taken for 5 to 10 years
• June 11, 2019

"I've been on Tysabri for about 7 years. LOVE, LOVE, LOVE this drug! I tried Avonex initially... I learned interferons and I don't get along well! Then Betaseron and Copaxone. Not strong enough. Tried Gilenya... always felt bad on it. Finally settled on Tysabri. Best decision ever! I have no side effects other than about a week before another infusion, I slow down... becoming more symptomatic and cranky! I'm a Tysabri 'junkie!'"

• Dhb...
• Taken for 5 to 10 years
• July 30, 2015

"I've been on Tysabri since January 2008 and have not had any flare-ups. It's even better that they can now test for the virus that causes the rare brain infection, which I don't carry. Benefit I like is it's done every 28 days, so I don't worry about missing a dose or giving myself a shot. It usually takes about 3 hours for the infusion. Only negative about Tysabri is the cost. I'm on Social Security disability, and after Medicare's payments, I'm left with a bill for medicine and infusion of close to $1200 every 28 days."

• Two...
• Taken for 2 to 5 years
• May 8, 2016

"Was diagnosed in 2009. I was on Rebif for 2 1/2 years and had 2 relapses. My doctor and I decided to switch to Tysabri, which I have been taking for more than 4 years. No relapses. MS is stable. I continue to test negative for JCV. This medication is easy and successful for me."

• Sad...
• December 11, 2015

"After being diagnosed with MS, I started on Rebif injections, which I continued with for a year and a half. I spent six days of the week with flu-like symptoms. To be on Rebif, I had to stop taking warfarin, which I need to help with another condition. 7.5 years ago, I was switched to Tysabri so I could once again take warfarin at the same time. That was the best thing that happened. I'm no longer feeling dreadful for the majority of the week and, in fact, suffer no symptoms. I'm fortunate that I'm JC negative and that the government here covers the cost of my infusions, and best of all, had no flare-ups since I started on Tysabri."

• 201...
• June 3, 2016

"In July of 2014, I was given the diagnosis of MS. The medicine has worked well for me so far. I have headaches after infusions, they don't last long. I take Cambia for the headaches. Tysabri helps me to walk, drive, travel, and keep my job. My dizzy spells don't happen as much. Tysabri is the only medicine I've taken for MS. I am still in shock from being diagnosed with this condition. I am very happy with Tysabri, even with the risks of JCV and PML."

• tk6...
• March 22, 2009

"I have had M.S. before 2000 and they diagnosed me in 2000. I have tried all the other therapies and all of them had the really bad side effects but Tysabri, it is the most relaxing drug you can take. I got a little nauseated at first but then it has disappeared with time. You don't even know it is working. I was considered a quadriplegic and now I can get around my home without lifts or anybody jerking or pulling on me. It is a great thing Tysabri. I just wish that everyone could benefit from it like me. Thank you."

• Han...
• Taken for 6 months to 1 year
• November 12, 2016

"Tysabri is the first medication I was put on after being diagnosed with MS. So far, it has been very effective. I started taking it after recovering from my first attack. I don't know if it is the Tysabri or just my body healing, but over the last 6 months, I have continued to feel fewer and fewer MS symptoms. I was even able to run a marathon recently. I do test positive for the JC virus antibodies, but my doctor had assured me that I can take Tysabri for up to two years with minimum risk of PML. The injection typically takes 1 hour, with another hour of waiting (something the government had mandated for some reason or another), but I have not felt any side effects."

• Cri...
• Taken for 2 to 5 years
• February 3, 2017

"I have been on Tysabri since Jan 2015. Every month, about 7 days before my next infusion, my body is completely ravished with joint pain, pain, and fatigue in my arms and legs. I have a cobweb feeling in my left shoulder blade, and my hands remain numb. I have been forced to go to the ER because the pain was intolerable. A few times I made it to my infusion but couldn't walk, and the pain was so great they had to give me Dilaudid before my infusion. It usually takes 3 days after the infusion for the pain to subside. Every single month I spend 10 days in hell, but I am blessed to get 20 days of normal life. The FDA needs to understand that this drug does not last 28 days, this should be a 21-day cycle, otherwise, people suffer with this drug."

• ash...
• January 12, 2014

"I was diagnosed in 2010. Tried Copaxone and Avonex. They caused allergic reactions. Started Tysabri in March 2012. I haven't had any new lesions. I get tired and bad headaches after infusions. The cost is getting to be too much, even with my insurance from my employer and the assistance program from Tysabri."

• Das...
• Taken for 1 to 6 months
• March 1, 2016

"I am a 52-year-old man who has had MS for about 18 years (SMPS). I'm on a lot of hormones for other problems, which have helped mask the MS symptoms, but not anymore. I'm now on Ty and have had 5 infusions and have not noticed any changes, better or worse, no side effects. I hope for a miracle, but who knows. I'm JC negative and have a lot of trust in my neurologist. Let's all hope for a better tomorrow, cost is 0 as Australia Medicare pays."

• Mpa...
• December 30, 2016

"I have to give it 10 out of 10, as it changed my life. After years of injecting other meds and continuing to relapse, I started on Tysabri in 2009. I can honestly say that I cannot work full time without it, as the fatigue is greatly improved while on it. I have come off to get pregnant and then continued back on after two babies. My last MRI showed that some of my lesions actually got smaller, and I have not had any brain atrophy while being on this drug. The only side effect I notice is slightly thinner hair. This is a drug that can have serious implications, and I think the choice to take it must be thought out carefully, weighing all the benefits and risks. But for me, it has saved my life for 7 years."

• Lel...
• October 24, 2015

"I was on Tysabri for 103 infusions, almost 8 1/2 years. I was diagnosed in 2002. Copaxone first with reactions, then used Rebif for 4 years. Helped a lot while it was working, then it stopped in 2006. Started Tysabri. The best MS medicine! I loved it! I am going to miss having no symptoms, side effects, or flare-ups. I just talked with the doctor going to try Gilenya in 2 months after Solumedrol. Keep"

• Fin...
• Taken for 1 to 2 years
• December 20, 2015

"I first wrote a year ago. I am now thousands in debt due to the frequent cut-off of benefits from organizations that give grants. I am not informed when the cutoff payments. So I owe thousands, why don't the infusion centers notify patients when they have no funding? I have had nothing but severe pain in my joints, severe rashes, sores, etc. I can't stand how I feel. I was over $200,000 in ACTH this last year. How can I afford to raise my family when I am denied all help? Who is getting all this money? I have been in a coma over 8 times this last year, twice on life support, 8 cases of sepsis. I have no family, just two handicapped children that I adopted. I can't believe doctors would do this to patients."

• Lin...
• Taken for 5 to 10 years
• October 19, 2013

"I was taken off Tysabri when my original consultant left the hospital. After 5 years of better quality of life, I now experience some nasty side effects after coming off the drug. Terrible rashes, MS symptoms returning, i.e., dizziness, fatigue, coordination problems, to name a few. Feel pretty rubbish to be honest. Consultant said couldn't justify the script as scans had no changes and was concerned about PML risk. I accept the risk, always have. Surely scans indicate the drug is doing what is expected? I'm stuck now, what is available for me to try? Cost is a big deciding factor!"

• Abb...
• January 6, 2012

"My husband has been on Tysabri for a year now. The first six months were great. He liked that he had no nausea and could control his bowels compared to Copaxone and Rebif. Fatigue improved. He had very slight improvements to his walking gait and balance. Mental attitude was improved. Lately, balance is poor, walking is dragging/carrying his leg forward, twitches and jerks are back. Strangers call him Spider-Man in public (he laughs). Depression is setting in again. Hearing ringing sounds."

• Dra...
• December 18, 2019

"Has anyone else experienced mental issues with this drug? I got severe anxiety and started feeling depressed after starting this drug and some mental confusion. Other than this, the drug seems to be working."

• Lad...
• August 1, 2011

"I have received 36 infusions, and from the 1st one, my progression stopped. My major side effect is extreme confusion. I feel as if I am going insane and taking my husband of 28 years with me. He is my biggest supporter, my hero, etc. I do not know how I would have made it the past 3 years without him. He is my translator because I get so confused I tell stories totally wrong, I talk backwards. I skip every other sentence, but the thing I must keep remembering is that my MRIs have not changed from the day I started Tysabri. I am staying with it for 12 more months, and hopefully, my wonderful husband, doctor, and I will survive this."