Tysabri quality of life

Common Questions and Answers about Tysabri quality of life

tysabri

5496522 tn?1368819256 Hi Everyone, I'm new to this forum (actually, any forum), and I was hoping to get some input from anyone who has suffered from complications post decompression surgery. It all began 2 years ago, when I hit a tree skiing. I suffered a severe concussion, but bounced back pretty quickly from the accident. A few months later, I began having neurological issues that were pretty serious, and after going from one doctor to another, I was diagnosed with Chiari.
2137079 tn?1335983532 I have to say I can sympathize with you as I am experiencing less than great quality of life after only one round of triple tx that was unsuccessful. I'm contemplating doing battle again but not with interferon. The fact that you completed three rounds in five years is a testament to your strength and determination. Sometimes I feel really P.O.'d about everything I have put my mind and body through only to be told I may be suffering from depression?!
768044 tn?1294223436 I had difficulty answering this, as my migraines are getting progressively worse. However, I chose "Not able to work...." as that's the best my migraines get. I then get worse from there.
Avatar f tn I wanted to let all my new friends know that I had my first MRI today since I started taking the Tysabri 6 months ago. I was diagnosed in 1995 and in 1996 I started Avonex- which made me sick everyday for years. I changed to Copaxon in 2000 and I hated it, so I decided to quit all MS medications, except for muscle relaxers, anti-depressants, etc. In 2007, my new neurologist asked me to try Rebif, but my insurance would not pay for it.
294425 tn?1288528395 I pray that you and others who face such risk and have to make decisions so you can have quality of life are monitored very closely :)
Avatar n tn Once you stop looking for a diagnosis and embrace management, I am not one for putting on a brave face and fighting to keep life the way it was before pain hit. You can have more control over your life, arranging it to encompass your limits, once you start building your own management plan...and I caution against letting a doctor do it for you, or try to push you to do more than you absolutely WANT to do.
Avatar m tn What are a professional's thoughts on someone in pain with zero quality of life? Is there any advice that I may not have heard that may ease my mind? I have had chronic nerve pain for over 5 years. It affects a very sensitive area of my body which seems to make the pain worse. The pain is vice-like, although I do have shooting pains when I "exercise". The pain seems to make me feel queasy, but I have digestive issues so this may be in my mind. I am 23 years old.
1088527 tn?1425313375 m sure it will go well and will make such a difference for your quality of life and those needle sticks.
Avatar m tn I don't know what others experience but during an A Fib event, my quality of life deteriorates completely. I did read that large doses of Vitamin D can cause arrhythmia so I stopped taking Vitamin D and the events have decreased dramatically in frequency from about 2/week to 1/month and intensity and duration. I was diagnosed with A Fib about 1 year ago but have been having what I thought was tachycardia for years but maybe only 2 times/year.
Avatar f tn 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.
1831849 tn?1383228392 At CMSC-ACTRIMS a presentation showed quality of life improvements in a significant number of Tecfidera users v. placebo. http://www.medscape.
Avatar f tn t think I want to be on this for the rest of my life. I know the pros and cons of this infusion process still being that this is all new to me I don't want to later find out along with MS I have this blood disease. I really need to deal with one illness at a time. Compared to never being seriously sick in my life. This is a toll to take. Is anyone out there going thru or went thru the same thing I'm dealing with?
Avatar f tn for quality of life he thought tysabri is the best choice for me (despite the risky side effects). I am getting a second opinion from my MS specialist (just to be on the safe side), but I've seen my MRIs and I agree with him. I will be happy to post my experiences or answer any questions that anyone had once I am on it. In the meantime, I am very interested to hear from those that are already on it and their general experiences with it.
2063887 tn?1337829746 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.
5591624 tn?1370494636 I was diagnosed with alcoholic cirrhosis and hepatic encepalopathy about two years ago. I had no idea I was sick until I began bleeding, couldn't stop and then turned yellow. A few months later I was lifelined to the hospital with septic shock, renal failure, liver failure, etc.-my system was shutting down. I have not touched alcohol in over a year now and I have given up Tylenol, but my "numbers" are not good. Platelet count is averaging mid fifties, wbc 2.
147426 tn?1317265632 The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.
1337734 tn?1336234591 At this point I am thinking that if I can get a few great years o Tysabri and finally get some of my life back, I would like to try it. I am also thinking hooefully some new DMD will be on the market to try in 2 years! Please share your Tysabri and Gilenya experiences with me. I realize it will obviously be my personal decision but I really want to make an informed decision and honestly there is no one that I trust on MS matters than our wonderful community. You are all the bes!!!
1118884 tn?1338592850 Thanks for the reply. I needed to hear that a stoma is not all that hard to adjust to, in case it becomes necessary. Will continue thinking positively and working with body to keep healthy. Too many issues and I am in overload. Remember thinking that worries would be over once I healed from radiation burns. Realize now that healing is a process; body keeps changing. I will keep 3 month appts and try not to worry.
Avatar m tn 17 yrs of living with and trying to be a productive person in society, after aortic valve replacement, my quality of life is such that I can no longer consider myself employable. With attendance issues being the foremost reason for this conclusion, Is it too far out of the question for me to be eligible for disability. I have applied in the past, and have always been denied.
Avatar f tn Right now I only say somewhat b/c even though my legs have improved...I still have a lot of pain, some headaches and many symptoms are still there from before. I am awaiting my 6 month MRI to see how successful the surgery has been. So...my answer may change down the road as things continue to heal and improve. One things is for sure I am still 100% positive that I needed to have the surgery done..the main thing is prevention of any more progression!!