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…
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…
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….
(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…
Does rain ever affect your multiple sclerosis? I find lately that the moisture in the air does have a small impact on my day. It’s certainly plays a role with my migraines. I’ve had headaches basically all week. However today they are expecting a nor’easter. New York State agencies are gearing up for a Thursday-to-Saturday nor’easter that could drench and blast Long Island with rain and high winds and envelop upstate with snow, officials said. From the moment I woke…
So yesterday morning I’m sitting here and I get a call from my insurance that the expedited review for ancillary services, a.k.a. the infusion, has not been deemed necessary. Therefore the review will be conducted at the usual standard time as per policy. WTF???? I thought the problem was they didn’t order the drug? Turns out they never got authorization to get the drug or to administer it. Authorizations have to go to my doctor. My first step started when…
I received a call at 5:15 yesterday, the reason why is the kicker. The pharmacy didn’t have it in stock they had to order it. Well duh, it is a specialty drug not a stock item, of course it had to be ordered!!!! I not only made this appointment 6 months ago but I recently changed the date from Monday to Wednesday. So I’ve spoken to the infusion place a few times over the last few weeks. You’d think maybe…
I’m seeing my sister from California today. She’s in for a very, very fast visit to New York and is coming out to Long Island for the afternoon. Yippee. I haven’t seen her in a while, she lives so far. I’m excited to spend some time with her today. First this morning I have to go to the doctor, yet again, to re-do bloodwork. Something where they didn’t take enough blood to get the test they required done. I don’t…
I jarred my head something fierce this morning. Getting up to go to the bathroom, my knee buckled, and I went down. I slammed into my floor and I just laid there stunned for a few seconds a little dazed. I just woke up it was little after 6:30, it happened so fast. I decided not to go back into bed to lay down for another half an hour, because I’m not 100% sure that I didn’t give myself a…
