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Who at Braintalk is on Tysabri?
Are any folks here starting Tysabri?
If so, would you be willing to post about how it is going, whether there are any good changes in your MS symptoms, any side effects? |
Hey BBS - How are you doing? I am not on T but going off A finally.
Did you ever resume taking anything after A? Tina |
Tina, Hi and welcome home. Nice to see you again. Long time.
Glad to see you too BBS, but I saw you recently at PT.:D |
Hi SallyC, fellow PTer, and great to see you again September.
Nope, I am going bare: the only treatments I do are Swank and Swim. No abcr drugs for me. I should say I take daily Valtrex to suppress Herpes, but I think research shows Valtrex does not control MS. I am so done with Biogen. They refuse to take responsiblity for what happened to my lungs. What I think that really means is that they think they could protect themselves if I were to sue them, so there is no need to compensate me for my lost wages, which is all I wanted. You know, initially their stance was they were not to blame. Then, Tysabri caused the 3 deaths and suddenly out of the blue I hear from Biogen's attorney and that they are looking into my case again. So, they got all my records, even my lung biopsy slide, and then, two weeks ago, they let me know they take no responsiblity for what happened to me. There is a special circle in Dante's Inferno for folks like that... |
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Are you going off of A because of your breathing problems? |
I am gonna give T a try. I have had my MRI, gotten insurance approval, and my doc's OK.
Now I am just waiting for the infusion center to get it's act together and start scheduling infusions. I've been waiting since the end of August :mad: I am ready,already! I look forward to sharing my experience, as soon as I start having experiences to share! Stay tuned! MSM |
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I shall be starting on Tysbari in the very near future. We are waiting on the infusion center to get approved by the TOUCH program. I was in the original studies with it several years ago, and when it was opened up, we found out that I had been getting the Tysabri. I did notice a change in my symptomology when I was on it at that time. I felt less fatigue, and had less trouble with leg and neck spasms. If you'd like more detailed information, you may private message me here. I'll be happy to share my experience with you. Bear in mind that I was also on Avonex at the same time. I so hope to be started back on it by the end of Oct. As soon as the infusion center becomes certified I will be having my MRI and going in to sign all the gobs of lovely paperwork that is necessary this time around. |
I hope both of you are able to get starting soon on your T.
I thought it might be a good idea to have a Ty thread where folks can post about their experiences in a centralized way, so that we have our own little research project going about side effects, improvements, and so forth. I know I am watching carefully how this Ty goes as a monotherapy. |
My DH goes in tomorrow for his final blood test (LFT's and CBC's) and then just waiting for the infusion center, also through TORCH... he should be starting soon, probably within the next month... course, it's not like he doesn't have anything on his plate at the moment... we're moving 100 miles away from where we currently live in the next 2 weeks... so that and starting therapy will be fun... oh, and we take care of our 5 kids with special needs... so, we have nothing but time! ;)
I'll be posting for him more than likely, but he might occasionally come on and say a word or two about how he's doing on the Tysabri. Dori |
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New batch..more problems. Doc says go off for 3 months & see if the issues resolve... if so, then I start C. He asked me about T, I said no way.. the people that died were on A & T. He said well you would go off A.. I said it would have to be years before I was off A & willing to try T. Are you still slowly getting better? |
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Thanks. Harry |
I had my first infusion 9/11
I'm feeling good and wonder after my 2nd if I'll be able to walk better. Less walker.
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I am having my 2nd Tysabri infusion in two weeks. I am on medicare and a supplement and didn't have any problem getting it approved. It was paid in full.
I am pretty happy so far. I did have four days of a headache and some increased bladder urgency a week after the infusion but it might have nothing to do with the Tysabri. I feel like I have a little more ambition then I did. Things don't sound quite so overwhelming. I am looking forward to seeing what happens after the next one. |
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I hope that your breathing resolves off of Avonex. Copaxone sounds like a good choice. I"m off of all MS drugs. I am so cuirous about Tysabri, but I'm not bad enough to try Tysabri. Plus, I dont trust Biogen to be honest about Tysabri side effects. I am so hoping that some of our fellow MSers who are doing poorly will do well on Tysabri though. |
I too really look forward to any updates from people on how Tysabri is working for them. I hope it proves to be a really good treatment option for us.
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Had my first infusion yesterday. Have had some flu like symptoms, was told that could be expected. No benefit yet, but it's only been a day.. I'll post with updates...
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I Am Ready!!!
:) i've been approved but have to wait another 6 weeks (from total 3 months) to get oral cytoxan out of my system.
cant wait. just got thru 3 day ORAL SOLUMEDROL to get over bad flare brought on by stress of travel and mother's death and all that goes with that. happy to say treatment worked and systems back to usual bad but tolerable. cant wait to get started on Tysabri. have lost too much already. left RRMS years ago. Specialist says i am great candidate....i am excited to get going. |
Rest up,, Linda. I am sorry about the loss of your mom.
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Hi Cherie60!
Are you still on LDN too? Cherie |
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Great news!
Good luck, and I hope Tysabri works very well for you! :) Cherie |
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Keep us up to date with your progress. Welcome Home and Hugs, |
Yeah. Good luck Marc!
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my 1st infusion was the 20th of September,, my next is the 18th of October,, I dunno, have wicked mood swings,, blood pressure dropped,, but back to the norm now,, I feel more punk,, more ambitious,, a lot of folks, who are medicare, { in my town}, with MS are having trouble getting this approved,, and are on stand by,,
I am going to give this a go,, nothing ventured, nothing gained,, Peg |
I am on Tysabri, and LOVING it! Woohoo!
Hi all, I'm new here and my name is Lauren. I have had MS for 30+ years. I have been on Avonex and Copaxone, oral and IVSM (which no longer work for me) and Novatrone is not an option for various reasons. I had one dose of Tysabri in early 2005, and after it was removed voluntarily by the manufacturers, I suffered a severe relapse in June 2005 that has left me w/c bound and homebound. I was RRMS for 28 years, up until last year when my neuro upgraded me to SPMS with relapses.
I just had my Tysabri infusion (restart) on 10/16/06 and I am SOOO relieved to be back on Tysabri, as it is the only MS therapy that has stopped my attacks, improved my symptoms dramatically within 2 weeks of the 2/05 infusion, and provided me with a better QoL. Since I now have more severe disabilities that were the result of further relapses due to not having Tysabri until recently (YAY!), I know my improvements may not show until my 2nd, 3rd, or even 4th Tysabri infusion...BUT get this: the day after my infusion, on Tuesday morning, 10/17, early in am, my caregiver noticed my balance when I was sitting up in my w/c (I did not have to hold on to the arms as much today to sit up) which is about a 60% improvement from yesterday, and I could move my toes very slightly (I haven't been able to do that for months!)...it's was not much improvement, but I was thrilled nevertheless. I wasn't expecting anything so soon...THEN, 5 days after my Tysabri infusion...today being Saturday, 10/21...I lifted my right foot about an inch off the ground by just thinking it to move, and I moved my left foot forward about an inch too! I started crying tears of joy as I had not been able to move my feet or legs at all since last year, 6/5/05! I could only do this one time, but THANK YOU GOD, I'LL TAKE THAT ONE TIME IMPROVEMENT!!!! I just pray I can do this more and more with each passing day. I'm making very small, slow improvements, but improvements just the same, WOOOHOOO! I can hardly wait until my next infusion...., but no matter what your choice of therapy is, I will support your choice. I testified at the FDA AC hearing on 3/7/06, in an effort (along with many other MS'ers) to bring Tysabri back to us an added therapy in the arsenal of medications used to fight our MS..you can view my videotaped testimony at: http://www.mspatientsforchoice.org/videocenter.htm and then clicking "Lauren's Video". There is also a really cool (short-3 min) video there that shows "How Tysabri Works". In a nutshell, Tysabri's 68% superior efficacy, safety when used as a monotherapy, improvements in QoL (which no other MS drug can claim), for me, the benefits far outweigh the very small risk of contracting PML (.01% or 1:1000-probably less than that, actually). It is more of a risk for me NOT to have Tysabri, as Tysabri protected me from further attacks/relapses. See http://www.biogen.com/site/home.html , http://www.elan.com/, and/or http://www.tysabri.com/touch.html. Actually, out of 3,000 trial pts and 5,000 gen. population pts (between 11/04 and 2/05), that were confirmed MS pts with non-compromised immune systems that received Tysabri as a monotherapy (me included), not one single patient developed PML...that's right, ZERO PML cases or a risk factor of 0:8000. Tysabri = to shelter (abri in French). Any of you can email me at LGLBGL2003@AOL.COM, if you have further questions re: Tysabri, or you can ask me here. You can also visit my homepage at: http://hometown.aol.com/lglbgl2003/m...e/profile.html . Whatever any of you decide to do, I wish you only the very best that life has to offer. Lauren __________________ Our todays are only stepping stones for our tomorrows. I am a very proud member of http://www.MSPatientsForChoice.org |
Hi Lauren, I remember seeing some of your posts at MSW. I haven't been there for awhile, so I am happy to see that you've had your 1st infusion and that, so far, you seem to like it.:D I hope your next infusion is even better.
I am on, only, LDN and so far (3.5yrs) it's keeping my MS stable with a few improvements. I'm going to stick with my harmless, inexpensive ( 25.00 per mo) LDN. untill they come up with a cure, that won't possible kill you.:eek: Nice to see you here, and I hope you will keep us up to date on your progress with TYsabri.:) BTW, whatever happened to the ELN message board? I use to read there, posted a couple of times and saw you there. Best Wishes Lauren. |
Hi Sally! I remember you too..
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Best wishes to you too Sally, and to all as well :) G'night everyone, Lauren |
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