Progress Update: Mycophenolate Mofetil

So far I don’t feel any better, my hand is not as bad as it was but I seamed to have reached a stalemate here… I might actually say I am noticing more symptoms lately, probably as a result of stress… My balance is not so hot and my peripheral vision has been going in and out. This is greatly frustrating me. I am also breaking out on my neck and chest really bad and am also noticing a decrease in my cognitive sharpness and memory… Equally frustrating…

I saw my neurologist yesterday and she slowed down my Prednisone taper and prescribed me Mycophenolate Mofetil, an Immunosuppressant which she said can take up to 6 months to kick in. Kind of bitter that I have added yet another medication to my remedy but if it works it works I suppose. I just know the bills are getting pricey…

My Neurologist also extended my disability… I am both happy an disappointed. I don’t want to be on disability for ever, I want to get my life going! Being on disability makes me feel like I am stuck in limbo, like time is still moving on but leaving me behind… But I guess at the same time, I need money, and since I can’t really get a job I need to be on disability… I am so broke and that’s part of why I am so stressed lately, bills, Christmas, etc… So overall I guess this is good news but I’m just very pessimistic lately I suppose. Ill post again soon!

13 Responses to Progress Update: Mycophenolate Mofetil

  1. Mai Khac says:

    So sorry to hear your symptoms are getting worst and you have to add new drugs to the list. Is that Cellcept?
    I'm on chemosuppressant too. It works for me. After 2 years on Azathioprine (Imuran), my MRI shows no new lesion, and old lesions are sleeping (not active haha)
    So good luck to you with that new remedy.
    Just like you, I always have the feeling "the world is going on without me", "I'm not a part of this society anymore", "I'm losing my youth to this MonSter" … when I'm hospitalized, when I have to wait so long at my neuro's office, or when I hear a friend is getting a new job with good salary. MS sucks.
    Sorry I'm supposed to cheer you up πŸ™‚

  2. Mai Khac says:

    Relating to disability, at least you can have it to cover your needs. Here I have to rely on my own, if I don't work it will be a disaster.

  3. Mai Khac says:

    What I most worry about you is the stress/bad feeling which can make your symptoms worst.
    Limboland is not a desirable condition but your career can wait. You can get better any time (that's one good thing about MS, unpredictable. ha), just be patient πŸ™‚

    Well I guess I'm on a roll today lol.

  4. jgycay says:

    I'm so sorry to hear you are not feeling better. I know exactly how you feel. With the craziness of the holiday's fast approaching I'm sure your stress level is out of control. Then throw in every day life and your at a breaking point. I joined a awesome web site/blog group called I feel very validated talking to other people who are having the same symptoms and are on the exact same medications. I have found it helpful. Give it a try.

  5. Matt Allen G says:

    Thanks everyone. first of all yes, I am very fortunate to be able to get disability, so I shouldn't complain, I guess I just really want to be independent and I feel like MS is robbing me of that option.

    Stress is my major concern right now as well, my mom is pushing me to get a job and I don't want one right now because I am not yet recovered and why would I even contemplate a job during the holidays when all I can most likely get is retail, that's just a synonym for STRESS.

    As for the imunosurpressent yes, it's Cellcept.

    And I am going to check that website out! Thanks again everyone!

  6. dukedraven says:

    Matt, I've been stable for more than 3 years after a severe MS attack which hospitalized me for nearly a month. I was using a cane until I found out about LDN. I've been taking 4.5 mg since 05/08 and it's helped me immensely.
    I stopped using a cane after using the drug for only a couple of days. I never used it again since. I could hardly go out in hot weather without my cooling vest. I haven't worn a vest since I've been taking LDN. This website is where I found out about LDN. Try it.
    I've been taking Capoxone since June of this year. It's the only CRAB that you can take LDN with. I think the Capoxone is helping too. I wish you good health! Peace, light and blessings always, David

  7. Matt Allen G says:

    I have never heard of that, I will have to look into it! Thanks

  8. dukedraven says:

    You're welcome, Matt, it's been a great help to me. Good luck!

  9. wonlife says:

    i'm taking cellcept as well, and i was amused (?) to hear you comment "if it works, it works…" i have always wondered how to tell if any of these drugs "work." what are they supposed to do? i know that none of them are intended to make me feel better, but it seems they are only supposed to slow down the rate at which i feel worse. i, too, have heard remarkable things about ldn, and it is at the top of my list to talk to my neuro about at our next appt., tho since this drug doesn't seem to have any clinical studies to back it up, most medical people don't know anything about it. as far as i can tell, it is the only treatment that even suggests any kind of recovery. so i guess it's worth a shot. what do i have to lose?

  10. Matt Allen G says:

    I was just thinking about this very thing this morning… How do we know ANYTHING is working? Sure I started taking my vitamins again and I am starting to feel better but is it really a result of the vitamins or is it just a coincidence that I started feeling better around this time because NOTHING is immediate so its so hard to tell. You literally have to have FAITH in your medication….

    LDN seems to do wonders for many, I think I started on way too high of a dosage so I have not been able to stay on it long term. I need a lower dose I think :^b but its worth a shot! But your right, not to many doctors know about it and will not prescribe it because of that… GOOD LUCK!

  11. Anonymous says:

    i have ms. what is ldn. I've not heard of that.

  12. Matt Allen G says:

    Watch that, works for some, but did not work for me, or I stopped too soon, not sure, but can't take it now….

  13. Matt Allen G says:

    (oh you might have to copy and paste that to your browser)

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