When i’d have an MS relapse, I would take 1000 mg a day in an IV for four days. Then you would’ve taper off from that thousand milligrams to an 80 mg pill three times a day and continue down to a 60, 40, 20 etc.. To me, that taper, always still made me sick because going from that 1000mg to 80mg was such a huge jump. My body would always have the steroid withdrawal anyway so I stopped doing…
Leaving behind all the BS that got me to the second infusion, let me finally talk about the infusion itself. Unfortunately it wasn’t the full dose of 600 mg. This specialty pharmacy ordered 300 mg so in two weeks I’ll be back again to take the other half. This is the way you would start Ocrevus. The second infusion was supposed to be a full dose. However, the infusion is basically the same. After they find a good vein for…
(CNN)In a rare move, the companies that make the multiple sclerosis drug daclizumab (brand name Zinbryta) have voluntarily pulled the medication from the market and stopped all clinical studies after reports of eight cases of serious brain inflammation among patients in Europe Read the full article here: https://www.cnn.com/2018/03/02/health/ms-drug-daclizumab-pulled-bn/index.html Each one of the drugs we take to keep as well, has side effects. You have to weigh the odds, the pros and cons of each of these medicines. I’ve been taking…
It’s 20 years that I’ve dealt with my multiple sclerosis. When I first started doing research on my own illness, it was stated that most people go into the second stage of the disease after about 10 years. The second stage of the disease being secondary progressive MS. Most people start off in relapsing remitting and, at the time, it was said that 80 percent of people in this stage will go into secondary progressive around that 10 year mark….
If you’ve never read my blog before, I invite you to look through the search box and find my numerous posts on biotin. If you don’t want to take my word, this is an article from the web with the doctor who has been conducting the clinical studies on high dose biotin in multiple sclerosis. https://multiplesclerosisnewstoday.com/2017/05/09/medday-new-phase-3-trial-and-belief-in-biotin-potential-to-treat-progressive-ms-interview-with-frederic-sedel/ My MS doctor had read the notes on the clinical studies and started me on biotin back in December of 2016. With biotin being a…
Going to the neurologist are usually a bittersweet day. I really like my neurologist in the city, she is a wonderful doctor. I honestly couldn’t ask for more compassionate, caring and understanding for MS. That being said, there’s limits to what could be done for me. Since seeing her regularly I’m on my third MS drug that I started back in September, which is Ocrevus. I can say that I was on Rituxan prior to this and the changes only…
I am finally feeling a little better. I got some Musinex yesterday which helped but the pounding in my head finally stopped too. I still don’t feel great but the fog that swept over my head and body has mostly lifted. I must again say with warning to anyone on an immunosuppressive drug be smart around others with any kind of sickness. I’ve was on Tysabri for almost two years and Rituxan for over a year and a half and…
I had to be honest and let others know in case it happens to you, I haven’t been feeling great since my Ocrevus infusion on Wednesday. I expected the day of the infusion to feel lethargic and tired because of the Benadryl coming through the IV, but I am still feeling that way. It is Friday morning and anyone with MS will understand me when I say my bones feel so heavy. My skin is super sensitive which is definitely…
Yesterday was the second part to my Ocrevus infusion. My next appointment is February 26, 2018. The all the headaches that it took me to get on Ocrevus and then all the headaches it took getting the infusion site, I’m happy to say I am done with this infusion. As expected, the infusion was smooth I had no allergic reactions of any sort. Other than being extremely tired from the Benedryl that goes through the IV line, I felt fine….
I blogged about this months ago. What’s amazing and messed up is I couldn’t get my insurance to pay for Rituxan forcing me to go on to Ocrevus when it cost so much more. I thank my stepmom for sending this to me this morning. It makes no difference but shows how the big business of the pharmaceutical world works. Is it ever only about the disease… https://www.bloomberg.com/news/articles/2017-08-23/how-roche-tweaked-an-aging-drug-to-keep-profits-rolling-in?cmpId=flipboard
