Page 2 of 6 FirstFirst 123456 LastLast
Results 11 to 20 of 52

Thread: Who has gone off their MS meds? What happened?

  1. #11

    Default

    Cat Dancer
    Thank you for your story. I am really sorry you are going through this. I am afraid what will happen. I was diagnosed around 12 years ago and only have fatigue, numbness, minor balance issues. I am not sure how long I will feel like I can pay $9000 a year when my husband a I are both retired. I really appreciate you taking the time to fill me in.

    Thank you everyone. I have a year to decide and will keep researching. At the moment I want to stay on them as long as we can afford them.
    Last edited by Bookfairy; 02-08-2018 at 05:48 PM.

  2. The following 8 users say "thanks"


  3. #12
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    3,943

    Default

    Other factors to consider
    For example. My neuro rec Ocrevus or Rituxan. My immunologist who dx me with CVID thinks it would be a disaster due to my Immune Deficiency Syndrome (CVID).

    Everyone has unique considerations.

  4. The following 6 users say "thanks"


  5. #13
    Community Member
    Join Date
    Dec 2007
    Location
    RRMS
    Posts
    25

    Default

    FYI, Bookfairy: I get Rituxan infusions in a hospital clinic. I Have zero copay due to the fact that the drug is given in a hospital. I have Medicare, plus BCBS.

  6. The following 7 users say "thanks"


  7. #14
    Distinguished Community Member Lazarus's Avatar
    Join Date
    Oct 2006
    Location
    western MA
    Posts
    1,329

    Default

    Quote Originally Posted by Ikoiko View Post
    This quote is hidden because you are ignoring this member. Show Quote
    FYI, Bookfairy: I get Rituxan infusions in a hospital clinic. I Have zero copay due to the fact that the drug is given in a hospital. I have Medicare, plus BCBS.
    I am glad you said this IKOIKO. All the chemo drugs I have taken are given at an infusion center and, you are right, there is no charge to me and not even a copay. I have never encountered any MSer who paid out of pocket for infused drugs. Friends of mine also get steroid infusions at the same place with no copay either.
    I keep forgetting to say this but am glad to have been reminded.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

  8. The following 8 users say "thanks"


  9. #15
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,530

    Default

    I went off meds in 2011 at the advice of my neuro at age 60. I had been relapse free for 8 years. 7 months later I had the most intense and problematic relapse so far. Back on meds for three years then off a year because it was so expensive. Back on after another relapse. I am now on Rituxan at an infusion center at no copay and doing well on it.


  10. #16
    Community Member soul's Avatar
    Join Date
    Oct 2006
    Location
    Small town Canada
    Posts
    61

    Default

    I discontinued Rebif in 2012 after 18+ years I was a patient for the PRISIMS Trials for (ifn) beta 1a / Rebif, I felt great for about a year and a half, and then secondary Auto Immune disorder started. With quite a lot of reading and consultations with my GP, I am being referred to a Environmental health clinic. I am allergic to pretty much everything, I had to go with a Natural products & clothing, the first signs of this showed up in food, I became allergic to most foods. All I can eat is Oatmeal, Apples, Oat bars,Bananas,Potatoes Broccoli and pork. I have been like this since about early 2014. I am allergic to my furniture, I played Guitar for 30+ years I can't touch Guitar strings anymore. I can't touch any oils, I can't handle chemical smells such as house hold cleaners, the smell of Gas fuel fumes.

    I had to detox my bedroom by going all organic with all my bedding Pillows, throw out most of my clothes and again went all natural cottons. I had been having headaches for a long time they would be low level headaches in the morning, once I removed my pillow and went with a wool pillow my head aches stopped.

    I have to say it changed my whole life, but on the brighter side I regained some health, I ride Bikes now something I couldn't do for about 28 years

    I have a question, Have you ever heard of "Multiple Sclerosis Burn out" ? about 4 years ago my Neuro told me that my MS had burned itself out, so ran it's coarse < as to this statement I am still confused as to the exact meaning nor have I ever met or connected with anybody who understands that Burn Out statement
    Any input on this would be appreciated.

    soul

  11. The following 8 users say "thanks"


  12. #17
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    3,943

    Default

    First, that sounds awful and a real challenge. I know a woman with multiple sclerosis who has similar allergic problems. I think I will show her your post.

    Re Burning out, I had thought that had been debunked within the past several years. I read that somewhere.

  13. The following 7 users say "thanks"


  14. #18
    Community Member soul's Avatar
    Join Date
    Oct 2006
    Location
    Small town Canada
    Posts
    61

    Default

    I came across a mention of it @ The Bart's School of Neurology a couple years ago it didn't make a lot of sense, when I first started talking about it, the subject was slammed by many people.

    So whats the purpose of (IFN) in R-R MS? is it so the attacks are lessened, hoping that the patient can ride out the various attacks over time with minimal damage over the coarse of their disease and possibly come out the other end with less damage, so being able to ride out the MS with as little damage as possible. Does this make sense?

    soul
    Last edited by soul; 02-12-2018 at 01:38 PM. Reason: because I can

  15. The following 7 users say "thanks"


  16. #19
    Community Member soul's Avatar
    Join Date
    Oct 2006
    Location
    Small town Canada
    Posts
    61

    Default

    With all that said, secondary auto immune issue's are common in MS. I am sure if you are reading this that you can tell I am trying to work this out in my head as I have a appointment with the Neuro who said it to me next month he was the Chief Investigator of the PRISIMS trial out of a site in Canada.

    soul

  17. The following 8 users say "thanks"


  18. #20
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    3,943

    Default

    Those are good questions soul. I will be curious what the neuros opinion is.
    You’re up against a lot. It was courageous of you to change your whole environment. Am betting people don’t get it and just think you’re being a fussbudget!

  19. The following 7 users say "thanks"


Page 2 of 6 FirstFirst 123456 LastLast

Similar Threads

  1. Replies: 13
    Last Post: 11-12-2012, 10:50 PM
  2. What happened
    By lor in forum Chit-Chat
    Replies: 2
    Last Post: 03-22-2012, 01:06 PM
  3. Here's what happened
    By JanM in forum Emotional Support
    Replies: 48
    Last Post: 03-07-2012, 09:27 AM
  4. Has this happened to anyone?
    By hummer in forum Chronic Pain
    Replies: 12
    Last Post: 09-16-2011, 01:33 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.