It’s always a good day followed by bad days. Doesn’t it always seem to go that way? I woke up this morning feeling like I smoked six packs of cigarettes. I haven’t smoked in almost 4 years maybe more. I hate that feeling. It’s something like the MS hug but not quite. I have a headache mild but there nonetheless. I also had a little numbness going down my left side out of nowhere. My stamina in my workout was…
The sun is out. My view is beautiful. My furniture for the balcony has been ordered and soon my blogs will be written from there. My little four-legged angels let me sleep a little in later today. I just woke up feeling great. It is just so nice to feel better. I have to admit it was a rough couple of weeks but that Ocrevus infusion. It really wasn’t even the Ocrevus that did it, it was the steroids. It’s…
I’m Back to pushing my body. Not that this is something new with me. This is what I’ve always done. I have a MS, I know that, but I push it to the limit. Sunday and today I did a 55 minute Zumba class. I haven’t done the longest class in I would say almost a year and a half. I used to only work out for 45 minutes or more. Things started to change actually when I got my…
I was informed by my friend that my pharmacy now makes a combination pill. It’s the same three pills a day, but it now has in addition to the hundred milligrams of biotin, 400 mg of the Alpha lipoic acid. You can click on the pill bottle on my webpage or you or you can click on the link I provided below. https://highdosebiotin.net/ Alpha lipoic acid has been studied to help in secondary progressive MS. https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/lipoic-acid Studies in animal models…
I found this article that in December of 2017, the application for high dose biotin has been withdrawn from the European market. https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing The European Medicines Agency (EMA) has been examining data on high dose biotin (MD1003, Qizenday) since the application was accepted in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…
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…
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…
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…
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…
