I have Primary Progressive MS and am struggling with the decision to begin taking the new drug Ocrevus. Has anyone taken it and what were your results/feelings/reactions to it? I am 64. Please tell me your age as I hear that may make a difference in side effects.
Also, if anyone has input on the use of Medical Marijuana, please respond. I have heard it can reduce brain lesions.
This was supposed to read Ocrevus, not Octopus. Sorry! (Auto INcorrect!)
Hi. I actually work for physicians that prescribe medical cannabis. I do a lot of education with patients as well. I've seen out do amazing things. It can help with tremors, muscle spasms, nausea, decreased appetite, restless legs....I could go on forever. If it is something you are serious about, make sure you see a physician who specializes in it. Someone who will take the time to educate you. Also, how thou take it matters. Dry bud vaporized effects the CNS and gives you instant relief. Oils effect you organs and tissues and heals from within. Like any other oral medication, it takes time to kick in. You can also get different strains, ones without THC, and daytime and night time ones.
I have watched patients come completely off narcotics and only use cannabis floor their pain. There is a huge stigma over it, but there shouldn't be. I've just seen it do so much good for people. Good luck.
Thanks. Now I need to find a doctor who knows a lot about it. Any suggestions for that?
Ocrevus all the way!! And MJ. I got into early safety trials of the drug as I was young 35 and no drug was stopping progression. I was getting 2-3 New lesions every 6 months for 2 or so year after diagnosis.
After 6months on drug I got my first stable MRI, hoping it holds for the entire year 8-).
It hasn't reduced the permeate symptoms I aquried, but I'll be happy as hell if I don't get anymore.
I also use MJ, mostly to ease muscle pain, and so I can sleep 8-), but I wouldn't count on it to "treat". I also can't drink now, so it's kinda mental break also, or when anxiety (much worse for me now) gets going it helps keep it under wraps.
Hope it helps,
Forgot to mention, I haven't had any side effects. Not even getting sick more often. It's also wonderful to have 2 times a year infusions vs daily injections / pills
Thanks, it does help. And that's good news for you. Do you have Primary Progressive or Relapsing/Remitting or?
Currently labeled as RRMS, but on the "fence" (?)
Hi I'm a 64yo m, diagnosis 1998. I was doing great until 7 years ago I got cancer, I beat the cancer but I think the cemo awakened my ms. Now walking with a walker and my balance is getting worse every day, grabbing onto furniture and walls to steady myself. I received my first infusion Monday 9-18. After I was back home I noticed I wasn't reaching for things to hold onto as much. Tuesday I had to go to Cleveland Clinic to see one of my neurologist and when I saw her I pushed my walker ahead of us and I walked straight and steady. She was amazed and I asked is this normal after one day on Ocrevus? She said she didn't know. I went back to Michigan and I stopped by my local neurologist and they had the whole office watching me walk with their mouths dropped open. Again I asked could this be Ocrevus working after one day and she didn't know either. I called the manufacturer, actually twice and asked them and they responded that their notes on the Trial didn't start until the 8 week, so they don't know. LoL. Who knows? I am not saying I'm cured but I'm at 90% compared to 25%. And im finding more and more things I can do that I couldn't for years. Getting out of a chair without grabbing something, putting on aa pair of pants without haveing to sit. Today I went down 8 steps without holding onto the walls and went up the same way. Before I would be petrified and be holding each side of the wall going down and I would basically crawl up the stairs. It's like someone flipped a light switch on telling my body to get back to normal. I don't know if ima freak of nature or it's Ocrevus but I'm still hunting for that answer. If I am a freak then I hope all of you are also so you can start enjoying life again. Please try Ocrevus, you never know if your next
Thanks. What a great story. That's exciting for you. Did you have any side effects at all? We're you ever worried about the brain infection (PML)? That's the one that scared me away.
Might want to read up and ask doctor on the PML, I don't think they have a case yet, and it's like a 3rd generation drug of these.
It very specifically goes after a specific part of immune system, and the rest of it is intact va 1st / 2nd generation of these drugs where it impacted the entire immune system and thus potential for PML.
Anyways, ask you doctor to help understand, you might have less worries about it.
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