Tysabri off label use

Common Questions and Answers about Tysabri off label use

tysabri

Avatar n tn Did your doctor prescribe it to you for this? If not, STOP right now...'experimenting' with prescription medications, which are extremely addictive can NEVER have good outcomes.
Avatar f tn s the official story. Many Tysabri users report a performance boost just after infusions and a drop off in performance just before the next infusion. I received 20 Tysabri infusions and didn't really feel much of either one. The good news was that I did not feel any obvious progression of my MS. Secondary Progressive MS is the eventual landing spot for 85% of people diagnosed with RRMS. I am among them.
572651 tn?1530999357 This report is from the NASDAQ ******* business site - tracking key issues on the stock market - Biogen's stock fell Friday on heavy trading with the release of this news about their star drug ...... it is astonishing to think they make $1 BILLION dollars a year on this drug. - Lulu 4th UPDATE: EU Reviewing Biogen, Elan's Tysabri; Cites PML (Updates with FDA comments, beginning in the third paragraph.
Avatar f tn It is perfectly legal for a physician, once a med has been approved by the FDA, to use it for off-label purposes. What isn't legal is for the manufacturer to talk the physician into using it for off-label purposes. So this med might be the best thing for you, and it might be completely inappropriate depending on where the professional got the info from. So you're right to question things, but as I said, that doesn't mean this isn't a good med for you.
Avatar m tn Hi DH - Welcome to our group. I am currently getting Rituxan (rituxmab) and before this I was on Tysabri. They are the only two DMDs I've been on. I have had good experience with both meds. Tysabri lasted about 20 infusions before it stopped working. The Rituxan seems to be doing the job now. I started Rituxan in November of last year and finished my second round yesterday. I had no adverse reaction of any kind to either med.
Avatar f tn my doctor had me try an incontinence drug that was designed for men with enlarged prostates. Obviously that problem doesn't apply to me so my use was off-label. My insurance questioned it but eventually allowed me to try it (btw, it didn't help!). I'm wondering if dmd's could also be rx'd for PPMS patients? The thing is there is no proof that they would work. Sorry, but I am just thinking in words here ... this might make no sense at all.
Avatar f tn One idea is Rituximab ( if my medical will accept off label). My doc has patieints on it, they are doing well on it. Who ouut there on foum has taken it?
Avatar m tn MS is an off label use for rituximab, so I suppose iot could be in trial mode. I think the real reason it remains off label is that no one wants to pay for the trials to get MS on the label :-) My B & T lymphocytes are monitored to gauge the effectiveness of rituximab. I had my first infusions late last year and my first monitoring blood work last week. So far so good!
100019 tn?1335919717 For genotype 1 patients who cannot take interferon, the panel recommends sofosbuvir plus the HCV protease inhibitor simeprevir (Olysio), with or without ribavirin, again for 12 weeks. This off-label regimen has not been through full Phase 3 testing, but performed very well in the Phase 2 COSMOS trial.
Avatar f tn They all have reported feeling better daily - this off label approach is a God Send! Now I will finish out the 12 weeks - they will do the viral load test again at that time and then 12 weeks post treatment test again to declare me officially SVR!!! NO HORRIBLE INTERFERON OR RIBAVARIN THIS TIME FOR ME!!
1635208 tn?1300807160 Hi welcome to the Hepatitis C community Olysio per the prescribing information sheet is intended to be used with interferon and Ribavirin. The same applies to Sovaldi. Per prescription they are not used together. However there have been clinical trials using them together "off label" and they have been shown to be highly effective when used together. You can web search for Cosmos clinical trial cohort 1 and cohort 2 to see study results.
Avatar f tn So far ive noticed my fatigue is worse and my balance is off again but not like it was. Before tysabri I had a cane and walker now I use nothing and would like to keep it that way. I started doinf volunteer work for hospice and love it. I would hate to go back to what I was before tysabri. I am seeing ms specialist dec 31st to see what my options are for dmd. I wont go back to shots and not happy with side effect profile from tec.
Avatar f tn Hi MBHB - Having MS is not cheap! Even with pretty good insurance It can be very expensive. I'm on Rituan. MS is an off label use of rituxan, so most insurance won't pay. Mine does pay and my out of pocet for rituxan alone is close to $5,000/year! I'm hearing a lot of insurance company push back on the new dosing of Copaxone. Hopefully they will cover the old dose. It looks like Teva has some co-pay assistance programs, which I'm sure you've researched.
923105 tn?1341827649 The relationship between you and this neuro is over and is not resurrectable. AND you will not change his mind with any number of statistics nor arguments. I, too, feel that he is mostly coming from a position of concern, but is plying his argument with terror. It is hard, as a physician, to see someone reject what you feel is the only option. To put it in perspective, when I had a parent who refused all immunizations, I typically asked them to seek a new pediatrician.
1168718 tn?1464983535 HI Candy, So sorry to hear of the new developments! I hope that your lipoma is just a lipoma. The bladder/vaginal wall surgery does NOT sound like fun. My sympathies and good wishes that all goes smoothly! As for status of SPMS, Tysabri has been known to help with stage per my neuro. Has it been considered? Remember that it's just a label and you are who you were before the label. Keep ightiing! You a strong one!!!
Avatar f tn t tell whats a flare, what is normal, and what is just my Tysabri wearing off. I can tell you this tho, if this is my norm after the Tysabri wears off, then it is definitely getting worse every month. My MRIs look good tho...NO CHANGES so gee I guess I am going great. I will be attending a candle light vigil for Marijane Lewis a 5 year old who was brutally murdered by her Mother this week. Please send your prayers for her. She was such a precious little girl born to the wrong parents.
Avatar f tn I read about this yesterday. While it is not godd to hear that PML is occurring with Tecfidera use, it is good to see that PML is no longer 100% fatal.
Avatar f tn Now that i am off of Tysabri for over a month, am getting more pesky symptoms. My foot drag is worse, I do more drunk walks, drop more things, use wrong words more often and last night was up with extreme dizziness and nausea and woke up this morning with a new case of ON. Interestingly enough, they are talking about putting me back on Tysabri, I had no antibodies to it (tests are back) and still am having the GI problems. The current theory is that MS is causing the GI problems.
Avatar m tn So to anyone who is THINKING about Tysabri, this should be your last resource of treatments to use. Also, PLEASE get tested for JCV BEFORE yiou start on Tysabri, and THEN make your decision!!
Avatar n tn m on a drug study, and Kyle above is on a next generation off-label treatment), so at least there are a lot of options if and when that time comes. Picking a treatment with MS can feel really complex, but it's doable! With information and knowing our own preferences, we and our neurologists hash it out.
2047903 tn?1330187549 m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.
Avatar m tn I am using Pegasys 180mug q/wk as an off label use to treat Polycythemia Vera and it works well.I will have to take this med the rest of my life. I am aware of the short term side effects, but what about long term side effects? What can I expect years from now?
1113735 tn?1273174430 I believe the trials in the US involve mostly G1. Members of this form have experimented with it off-label (not for the prescribed purposes) with mixed results. It may improve the efficacy of interferon. don't know about liver stages or alt, ast. personally if i were to start treatment tomorrow i would add it.