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…
(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…
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’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 kicked ass this morning. New workout and I stood on my feet for a record of 18 minutes. Omg!!! That’s incredible. Granted my feet can’t move too much, but that’s ok, that was an tremendous amount of time. In physical therapy, one of the main things they do for people with multiple sclerosis, or people that can’t really stand on their own anymore, is put them in a device that either stand them up or strap them in bars…
https://www.medicalnewstoday.com/articles/320772.php Interesting article in medical news today. A team of scientists, in Northwestern University of Chicago, found a interesting relation between testosterone and the immune system. They may have discovered a molecule that actually cards against multiple sclerosis. They call the molecule, the Guardian Molecule. In a quick summary, the team discovered that testosterone prompts a group of immune cells called mast cells to secrete a signaling molecule called interleukin 33 (IL-33) in the males. The scientists found that IL-33…
Happy Friday. I had my physical therapy evaluation yesterday. This year it’s all about the core. Or I should say the lack of core. I have four exercises I need to do every day. Very simple exercises, for normal people. However, I’m not normal people. These four exercises are very difficult for me. I was exhausted after doing them. I’ve explained this so many times in this blog, fatigue is not just tired. It’s exhaustion where are your muscles are…
Good morning and happy Wednesday, middle of the week, hump day. I didn’t have my view yesterday. It was so much fog out here I couldn’t even see the water. Today I can see the water so I am automatically happy. Sitting down with both of my dogs on my lap and feeling good. I started taking the DoTerra vitality vitamins and supplements over a week ago. My review so far is it’s a lot of pills. However, for me,…
