tag:blogger.com,1999:blog-9214836190058278976.post2347223693135493542..comments2023-04-01T20:39:11.469+08:00Comments on Lumpy Custard: D.Day Tysabri Infusion.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-9214836190058278976.post-83325522875332499602013-06-04T16:10:34.996+08:002013-06-04T16:10:34.996+08:00Hmmm very interesting. Did your gyno say it was t...Hmmm very interesting. Did your gyno say it was the Tysabri or just part of the menopause phase? I find people with MS tend to attribute every new issue to it... Could you be doing this with Tysabri? For your sake I hope it is not caused by the Tysabri, as it has halted my MS and could help you in this way as well. Also I hope menopause goes more smoothly for you in the future. Thanks for reading and kind regards, Lee-Anne.Lee-Annehttps://www.blogger.com/profile/13681783112565880436noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-65504661796699139452013-05-27T08:12:36.317+08:002013-05-27T08:12:36.317+08:00I recently went for my first tysabri treatment. At...I recently went for my first tysabri treatment. At first I fet no side effects what so ever. Two weeks after T I had to see a gynecologist for female issues. I'm 55 going through menopause. I feel like the sahara desert. Very uncomfortable. I was given a medicine to help. I do not know if this is permanent.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-17561562847420462112012-07-23T14:41:19.656+08:002012-07-23T14:41:19.656+08:00Hi Susanne. Wow five years on Tysabri, that is pr...Hi Susanne. Wow five years on Tysabri, that is pretty awesome. No new lesions, that's all you can ask for, right? I didn't really think Tysabri reversed damage already present... people just apparently feel better on it... I feel pretty normal even after being diagnosed with MS for almost 10 years.<br /><br />The one side effect I think I've had with the Tysabri is feeling very tired, especially in the week immediately following the infusion (its only been a week)! I don't normally suffer from fatigue. In hind sight, I have had a week of late nights as well. So I hope its due to that rather than the Tysabri. Or if it is I can't wait for my body to adjust. <br /><br />Thanks for sharing and good luck. xxLee-Annehttps://www.blogger.com/profile/13681783112565880436noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-33035631466430181872012-07-21T19:30:26.140+08:002012-07-21T19:30:26.140+08:00I was on Copaxone for 2-1/2 years, and in the last...I was on Copaxone for 2-1/2 years, and in the last year my lesion load increased by 8. That's when my doctor said we need to try something new. After subbing my options, I chose Tysabri.<br /><br />This past Monday, I started my fifth year on Tysabri. I love it. I've never had any side effects. It's only once a month. No more shots everyday...Yay! I was on it for 2 years before I had JCV test done. Luckily I'm negative and have remained that way. My lesion load hasn't decreased while being on it, but it hasn't increased either. My MS is more mild than others, but I haven't had a relapse while being on T either. Other then residual stuff from earlier attacks, I feel pretty normal :)Susannehttps://www.blogger.com/profile/02541818947891733283noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-35083079380447083242012-07-19T15:37:50.467+08:002012-07-19T15:37:50.467+08:00Timikt... I guess at some point we have to trust t...Timikt... I guess at some point we have to trust the people we put in charge to take care of the medical side of things. Your neuro is conservative, so he is going to err on the side of caution, right? Just looking at the same stats I reported in the above post... given that you are JC+, have used an immunosuppressive drug in Novantrone and have been using Tysabri for 6 years, your chances of PML are 1 in 90. That would make me nervous too. But you are nervous, which will make you even more cautious. Pay attention to your body and rule nothing out as being silly, ok. Do your research and be educated about your risk. I am quoting from this post... http://multiple-sclerosis-research.blogspot.com.au/2012/07/natalizumab-associated-pml-risk-june.html Good luck Timikt xxLee-Annehttps://www.blogger.com/profile/13681783112565880436noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-79528130338148736342012-07-19T11:22:45.869+08:002012-07-19T11:22:45.869+08:00I've been on Tysabri for six years. I am JC p...I've been on Tysabri for six years. I am JC positive, and I did a course of novantrone. All the bad stuff. But my neurologist (who is essentially conservative,) thinks I;m doing better on Tysabri than I did on anything else, and he wants me to continue. It makes me nervous, but I trust him. Good luck.<br />Timitimikthttps://www.blogger.com/profile/06956770955907195339noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-2829003396278885522012-07-17T09:55:14.447+08:002012-07-17T09:55:14.447+08:00Thanks for your support Lisa. Writing about these...Thanks for your support Lisa. Writing about these things helps me stress less and clarify things in my own mind. xxLee-Annehttps://www.blogger.com/profile/13681783112565880436noreply@blogger.comtag:blogger.com,1999:blog-9214836190058278976.post-4601553360545170202012-07-16T18:42:36.844+08:002012-07-16T18:42:36.844+08:00Thank you for sharing Lee-Anne :-) you will always...Thank you for sharing Lee-Anne :-) you will always have Trystans and my support. Good luck and we are thinking of you xxLisa Martinsnoreply@blogger.com