Tysabri blog

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tysabri

Here is a link to the blog I found where Tysabri users weigh in, if you haven't found it yourself, or found something better. http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/tysabri-a-progress-check/ I'll be checking in, take care, my friend.
Anyone else feel run down and just crappy after Tysabri infusions?
I will be having my fourth Tysabri infusion on Monday. I have been keeping a journal ...It is called "Hoping for a Miracle"...lol...At any rate, I had my first infusion a bit too late and landed in the hospital for thirty days. The day I was released I had my second. Now infusion two and three seemed to give me three weeks of great hope.
http://00634ca.netsolhost.com/blog/?
It involves only one patient so far, and that patient is still alive. Despite ahving not used tysabri, they had used an interferon just before Gilenya, and steroids both before and during the Gilenya treatme t. Worth keeping an eye on this story, for sure.
html I'm pretty sure I don't want to try it. 1) Tysabri is working well, and I'm JCV negative.
"Genentech withdrew its psoriasis drug Raptiva from the market yesterday, citing the risk of developing progressive multifocal leukoencephalopathy (PML), a rare, often fatal brain infection. The drug will be phased out by June 8 of this year, according to a statement by the US Food and Drug Administration (FDA)." http://www.the-scientist.com/templates/trackable/display/blog.jsp?
I had a relapse in between the two falls and that took time and energy for treatment. I am also still traveling to Columbus monthly for my Tysabri and had an extra two days of trips this month to complete the Tysabri study I have been in. Monday—Friday are still work days for me, although if I had to give up anything, this would be it! Unfortunately that is not an option since our health insurance is through my job. On Saturdays, at least half of the day is devoted to the MS Swim group.
I take D3 only. Vitamin D Council has an articles about vitamin D levels: I tested my vitamin D level. What do my results mean? I just picked the last two levels since the article is very long.... "My level is between 100-150 ng/ml Although these levels aren’t toxic and aren’t usually harmful, they are thought to be too high. There are no known benefits to having a vitamin D level over 100 ng/ml.
You haven't said if you are on any other medications (maybe in your blog which I've not read) so I am just going to answer you from my experience. I have done the monthly steroids both when I was on Betaseron and when I was on no DMDs. I did them for 6 months - during the warmer weather as I am heat intolerant and the theory was to try to lessen the severity of my exacerbations when I was on Beta. It did help.
As an interesting aside, a recent study found that Tysabri seems to have caused o-bands to disappear in a percentage of patients: http://multiple-sclerosis-research.blogspot.com/2012/11/research-natalizumab-reduces-b-cell.html (BTW, if you're interested in MS research, this is a great blog run by MS researchers). Lola, I hope you get some solid answers from your tests.
That is what I have heard to. It is so hard to measure progression that is the main reason there are so few studies. The studies for PPMS wanted me to have multiple LPs and I am not signing up for that. Plus the drug companies make less money on progressive MS so they are going where the money is RRMS. It is easier in RRMS studies to show less lesions than it is to show slowing progression. Now with my cancer I am not eligible for MS Studies.
First time posting here, but I have been diagnosed with MS in Dec 2012, and tested positive for Lyme through Igenex September 2013. Up until then, I had several LabCorp WBs that kept showing bands 23/41 as present, but of course I was negative to the CDC. I had several lesions on brain and both spines, complete sensory numbness from the chest down including hands, so I am a classic MS patient. As of now, I refused MS drugs and am taking LDN at 4.5mg and several supplements like NAC and ALA.
I have seen patients, whom I don’t think have MS, receive powerful medications with potentially fatal consequences such as Tysabri. In fact, one of the patients who died in the initial studies of Tysabri was found on autopsy not to have MS. Moreover, it would be a mistake to diagnosis a patient with MS, if they had a different illness that required different treatment. I have seen other illness that mimic MS go untreated until they are properly identified.
MS research has relied heavily on the EAE model and yet virtually every therapy that worked in EAE has not been successful in the clinic. Conversely Tysabri didn’t work very well in the EAE model but has been very successful in people with MS. The Myelin Repair Foundation is always keeping in mind that animal models are just that, models, not the real human disease. While the MRF does use two different EAE models we are very conscious of their limitations.
NO experience here, but my thoughts are, if my CNS were under continued attack by these misguided cells, I would def. take tysabri, or chemo drug to halt them. And, then just pray I make it out to the other side of what chemo does. We have had some members on them. Funmonkeytoes who has a very progressive MS has been on more than one chemo - haven't seen her in awhile, but I always use posts like yours as an opportunity to check in with her to see if anything is working.
Even then, like with Tysabri, we may have rude surprises after the are FDA-approved and in wider use. I have NEVER meant to dissuade anyone from using them. I chose to take Avonex and, only when I stopped because of the Medicare Donut Hole problem, did I realize how much more depressed I had been on it. I suddenly had less morbid thoughts, like wondering how long I would let myself live until I ended it all.
com/forums-viewforum.html and some people are posting about their experiences having stents put in (one guy even has a blog at http://myhopefuljourneyintoactualmsrecovery.blogspot.com/). I've only really skimmed it, but there is a lot of interesting info. Although there's a lot of hope and enthusiasm, there are also some good discussions of caveats. One of them obviously is the question you raise of cause and effect.
http://msj.sagepub.com/content/19/2/188.abstract It's an interesting way to think about things. According to the study's findings, if a person gets to 45 without converting from RRMS to SPMS, the chance that they ever will convert drops to less than 50%. Also, "Onset of progression is more dependent on age than the presence or duration of a pre-progression symptomatic disease course.
Those might help me not be in this much pain at night if I would take some stress off my legs during the day. I am waiting to hear back from UCSF neuro. My tysabri was administered 3 weeks and 6 days ago and tomorrow is my treatment. Maybe this is my norm as the tysabri wears off...oh I hope not since I haven't heard back from UCSF at this point in the evening, I am not driving 45 miin the fog and have the tysabri administrator tell me they have to talk to the Dr before they can treat me.
My MS Specialist says his hospital will do Stem Cell Therapy for MS, the catch is they have not found one candidate which is a healthy person at the beginning of RRMS who is so bad off the DMDs or Tysabri are out for treating the MS. This is promising for the future but not now.
//msnews.acceleratedcure.org/node/3597) gives the examples of "cardiac problems, an eye disorder called macular edema, and impaired lung function." There is also some info on the FDA website at http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/PeripheralandCentralNervousSystemDrugsAdvisoryCommittee/ucm214668.htm from the recent meeting. LONG-TERM SAFETY: CRABs have been in use for 10-15 years and haven't thus far turned out to be ticking time bombs.
My neuro is not against me having treatment for any venous insufficiency, but she will not let me have Tysabri if I have treatment for CVI. Please, keep us posted on how the turf war plays out between the vascular docs and the radiology docs. Quix, I just want to expand on something you said...
Spending hours every day, seven days a week, reading blogs and medical research, turned her into a believer. MacQueen’s account of her surgery, which she describes on her “I hate MS” blog, sounds like an infomercial. “I’m walking now; all the numbness and tickling is gone from my body; the spasms are gone; I’m not limping, my foot drag is gone. I’ve got so much more energy.
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