Browsed by
Tag: ms life

Application for high dose biotin (MD1003, Qizenday) withdrawn from European Market

Application for high dose biotin (MD1003, Qizenday) withdrawn from European Market

I found this article that in December of 2017, the application for high dose biotin has been withdrawn from the European market. https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing The European Medicines Agency (EMA) has been examining data on high dose biotin (MD1003, Qizenday) since the application was accepted in September 2016. At a meeting last week, the EMA’s Committee for Medicinal Products for Human Use (CHMP) concluded that the clinical data from two trials that enrolled 253 patients was not sufficient (link is external) to…

Read More Read More

Pictures of what makes me happy

Pictures of what makes me happy

I’m happy to say I’m all done with Ocrevus for six months. I just have to deal, of course, with the side effects from the steroids. I have to be honest too, these medicines and these infusions mess with my mood. I feel like I haven’t been my happy self in so long. I’m back to living in my four walls of a MS because I haven’t left my apartment. I’ve gone out for physical therapy and a couple errands…

Read More Read More

Second half of Ocrevus infusion today

Second half of Ocrevus infusion today

I should be done. I should be done with the side effects from the steroids. I should be done with sitting there for 5+ hours. I should be done with the Benadryl. Yet I am not thanks to the infusion place ordering the wrong dosage amount last week. I once again have to go in today. I decided not to wait two weeks like when you first start Ocrevus because I just want to get it done. I once again…

Read More Read More

What am I taking for Multiple Sclerosis

What am I taking for Multiple Sclerosis

Over 20 years I have been on many different drugs. I’ve stop taking things and started taking things. There are many drugs I’ve taken for the MS itself and many for its symptoms. I figured I list all the things I take right now from my MS. I’ve also included links to clinical trials and a couple of drugs I recently stopped taking. Ocrevus this is my main drug for relapsing remitting MS. I take it through an IV once…

Read More Read More

Juicing through an infusion

Juicing through an infusion

I’m happy to report I’m feeling better. Im also happy to report it’s Friday. I think these weeks seem to be speeding up again. Maybe it’s because I’m older. I just feel like I was just writing about it being Monday. I’m still keeping my schedule light for the weekend. I just wanted any possible side effect from the last Ocrevus infusion to not be an issue. However when I made the schedule, I was expecting to have taken the…

Read More Read More

Steroids and steroid withdrawal

Steroids and steroid withdrawal

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…

Read More Read More

Second Ocrevus infusion

Second Ocrevus infusion

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…

Read More Read More

Update Ocrevus infusion started

Update Ocrevus infusion started

Some how, someway, we are on the way. IV line in but still waiting on medicine. Happy to say my veins cooperated on the second try. Now the pharmacy called that they only had 300mg of the Ocrevus when the orders clearly say 600mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know. I will continue to add to this post. So I once again am doing a half dose of…

Read More Read More

No Ocrevus infusion again more insurance issues

No Ocrevus infusion again more insurance issues

I have no words. I’m so frustrated that the only thing I could do was cry. My insurance made some error and terminated me on one of their systems. I knew about this since last week and I had an escalated adjustment that was being done. I didn’t find out until yesterday they didn’t do it by accident when I called for something else. However the kicker is that the error that terminated me, terminated me in my authorization department….

Read More Read More

Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

(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…

Read More Read More

Verified by MonsterInsights