I have been on Tysabri over a year now and have had zero side effects. Besides being only once a month, no nausea etc., it is considered a medical procedure rather than a prescription so is covered by my medicare & supplement. I am comforted by the fact that it creates an adhesion molecule that makes the "bad guys" stay within the blood vessel and not cross the blood brain barrier into the brain to cause inflammation/lesions. I give it a "thumbs up""!
Hi...unfortunately, I was only able to try Tysabri for one dose. I had the dose in December and have been off work ever since. I experienced severe nausea with some intermittent vomiting for 30 days and within that time period I developed 3 seperate infections so my doctor felt it was not worth trying again. I was then sent to Stanford to discuss further treatment options and that doctor felt my body was telling us something by rejecting all treatments attempted so far, so I'm not on anything for the time being. I'm seeing a new neurologist at the Institute of Restorative Health and he ran more blood tests than I've ever seen, and I will go back the first part of June for the restuls and we will discuss other options at that time. He was also the first to listen to some other concerns I had that didn't appear to fit into the MS box and so I'll be going back to Stanford to see their Rheumatology department to be evaluated for a collagen or connective tissue disorder. Overall I was happy with the new doctor but hopefully I'll know more about treatment options at this next visit. I'm glad you're having good luck with yours Patricia, do you go to Critical Care Systems? Best of luck to all Tysabri users! Sara
I have heard of a chemotherapy drug that is getting good results with MS. Is Tysabri what they are talking about? I have heard stories of MS patients getting out of the wheelchair, etc. Where is this Institute of Restorative Health? Is it in Redding? Any info anyone has would be appreciated. Would love to find a miracle!
It could be Tysabri that you've heard about. We have several folks in our group that are doing Tysabri. In order to do Tysabri, your doc must be TOUCH Certified. I know 2 local doc's are certified, Birk and Rabiee.
The Institute of Restorative Health is in Davis. Dr. Eric Hassid is the neurologist there. He spoke to our group about a year ago, and many were impressed. Here's their site: http://www.4irh.com/
There are a few new drugs in trial studies now. There is an ORAL drug in the pipeline too! YAHOO! http://www.webmd.com/multiple-sclerosis/news/20080416/good-news-for-oral-ms-drug-fingolimod
What I have learned about MS, is that everybody's symptoms are so different, yet the same! Different drugs do different things for different people.
I have read many miracle like testimonials for LDN. A VERY inexpensive compounded drug. Yet, it doesn't work for everybody.
I have heard more than once, MS could really be about 4 different diseases.
A few of us who have had head trauma in our life, are doing the Upper Cervical Chiropractic. Good results there. I feel it is worth an x-ray of the neck to see. There is another discussion here about it.
My wife is an oncology nurse at Mercy Hospital in Redding. She works in the chemotherapy clinic there. She also helps our MS patients with Tysabri infusions once a month. Many of these patients don't come to our monthly meetings and we don't get to hear their personal testimonies about the therapy. However, I wanted to share some hearsay so we can make appropriate decisions about whether or not to try this.
One of her patients is a man diagnosed with MS. His symptoms included a loss of smell. After his first Tysabri infusion his sense of smell returned. This patient also recently had another MRI performed. It turns out the plaques or blockages in his brain have decreased in size. This is visible evidence that, for him, the therapy is evidently reversing the disease process.
Another patient, a young mother, had previously been unable to hold her newborn baby because her hands and arms were too uncoordinated. However, after her first infusion she was able to be more functional. My wife says there are several others who have had positive results. But they don't attend our meeting yet.
My wife has tried to convince me to try Tysabri, but I'm still at a point where I'm tired of chasing after the cure. But I've asked her to try to convince some of these people to attend our meetings and give us a first hand account.
Wow! so many impressive Tysabri stories. I wish I had been one of the lucky ones. Has anyone read the newer news that 2 more people developed PML while on Tysabri since it was re-introduced in the U.S.? I think the cases were in Europe. i'm not going to try it again because of how many infections I got, it was pretty scary being rushed in for an MRI in case it had effected the brain, just the though freaked my husband out.
I used to be an Oncology RN at Mercy, but I worked nights so I doubt that I ever met your wife, Eddie, but it's a great group of staff there, I miss it! Sara
I been on Tysebri going onto three years, I was diagnosed with MS five ears ago. UCSF started me out on Avonex, I tried this for nine months. The side effects were to extreme, plus my MS kept going down. Went to Copaxin after wards, had zero side effects but no improvement on the MS.
Within two years had gone down to a wheelchair, doctor was running out of options. It started to look like a wheelchair was going to become a permanent thing. He suggested Tysebri telling the past record of it, I decided I was willing to take the leap.
Within a few months, my mind fog was starting to go away. In six months I was walking without any assistance. Since I started I've written a childrens book, a handful of short stories.
I've no side effects, I do fight depression on a daily basis. I don't think it is from the Tysebri, more with coming to terms with the desiese and life changes.
I know my muscles have deteriorated from to much time being immobile, but I need to exercise more regaular basis. All in all Tysebri has worked wonders for me.