Page 2 of 2 FirstFirst 12
Results 11 to 18 of 18

Thread: Survival and mortality in MS--60-year study of 1388 MS patients

  1. #11
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,173
    Blog Entries
    12

    Default

    Thanks for the link, BBS. It seems that there have been 22 cases of listeriosis associated with Lemtrada in MS patients, and 3 of the cases were fatal.

    And it's connected to certain kinds of food that you need to avoid for several weeks before the infusion. Not so easy considering that the foods are really common--deli meats, hot dogs, soft cheeses, celery, sprouts, ice cream.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  2. The following 6 users say "thanks"


  3. #12
    Distinguished Community Member Howie's Avatar
    Join Date
    Oct 2006
    Location
    The planet Earth
    Posts
    5,544

    Default

    The only food on that list I ever eat is ice cream. But I'm not ready to try that drug, or any. Thanks for the info.

  4. The following 5 users say "thanks"


  5. #13
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    3,001

    Default

    Do any of you remember a lady who was on here who died of complications of giving Copaxone. The site reactions were really bad for her and she kept giving them because the Nurse told her to. She told her to put hot cloths on the sites after the injection. She would come on and state that she was doing everything the Nurse told her to do and was not getting any better. I couldn't figure out why she didn't stop the drug, but later she died and a friend of hers came on long enough to say that she really had tried, but that she died from necrosis of the skin.

    I remember that - it has been a long time.

    I also remember another man from my live support group telling me that he had an Uncle who had MS and died from an undetected bladder infection.
    Virginia

  6. The following 6 users say "thanks"


  7. #14
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,173
    Blog Entries
    12

    Default

    You might mean Rita Slater? I think she was rslater here. I was in touch with her by e-mail after she left this board. I believe she left mainly because she was too ill.

    The neighbor who lived across the hall from me for about 17 years whom I've mentioned before died a few years ago. The unofficial account was that his kidneys failed. I don't know what the official cause of death was for anyone I know with MS who died--there have been about 10 people I've either known personally or by snail-mail correspondence/phone contact. I've lost track of 4 of them but I'm fairly sure one has died and quite possibly the other 3 as well.

    These are people who weren't on this board. I knew them before I knew about the Internet. That would have been before the disease-modifying MS drugs too.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. The following 6 users say "thanks"


  9. #15
    Distinguished Community Member BBS1951's Avatar
    Join Date
    Oct 2006
    Posts
    1,772

    Default

    I remember rslater. I didn't know this happened to her, or perhaps I knew it back then and then the memory faded. In any case, it illustrates how many things can go wrong with medical care.

    With MS, many of us, myself included, have many encounters with docs, nurses, CNAs, med assistants,hospitals, doc receptionists., pharmacies, nursing homes, etc. ...Any of these can become the weak link in getting good care.

    Maybe it is no accident that my typing in pharmacies autocorrected to harmicides.

    Harmacides, a new word to refer to death from incompetent medical care.

  10. The following 6 users say "thanks"


  11. #16
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    3,001

    Default

    I remember rslater and I think it was the same person I was talking about. She did become too ill to come on the forum. Why they did not take her off Copaxone I do not know.
    Virginia

  12. The following 6 users say "thanks"


  13. #17
    Distinguished Community Member SuzE-Q's Avatar
    Join Date
    Nov 2006
    Posts
    1,609

    Default

    The Norwegian study also confirmed a number of other findings, including the observation that patients diagnosed at a younger age had a higher relative risk of dying than patients diagnosed at an older age.
    Interesting how we've been led to believe that an earlier dx provided a more milder course, but that clearly is not born out by this research, unless you have a milder course but will die earlier for some other reason which doesn't make sense.

    I wonder if the study supports then the overall impression that the DMDs may lower exacerbation rate, but improve no other qualitative factor including disability progression if we still end up with the same risk for vulnerabilities that eventually result in an earlier death, presumably from cumulative damage and increasing health limitations?

    Thanks, agate!

  14. The following 7 users say "thanks"


  15. #18
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,173
    Blog Entries
    12

    Default

    SuzE-Q, I'd heard differing versions of that theory about whether persons diagnosed early in life have a greater or lesser risk of dying young than people diagnosed later in life. It all depends on what study you're looking at, apparently.

    For this Norwegian study they're seeing a trend toward a decline in the early mortality rate but as they point out, the DMDs haven't been around long enough yet for the difference to show up in this kind of study.

    Virginia, I stayed in touch with rslater by email for quite a while after she left the forum but I don't recall when or if she was taken off Copaxone.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  16. The following 6 users say "thanks"


Page 2 of 2 FirstFirst 12

Similar Threads

  1. Replies: 2
    Last Post: 09-20-2016, 06:52 AM
  2. Daclizumab, 3 year extension study results
    By SuzE-Q in forum Multiple Sclerosis
    Replies: 4
    Last Post: 07-30-2016, 07:57 AM
  3. TRAUMATIC BRAIN INJURY SURVIVAL GUIDE tbi survival book
    By linniec in forum Traumatic Brain Injury
    Replies: 3
    Last Post: 12-31-2013, 01:06 PM
  4. Approved research study for epilepsy patients
    By Mike Weins in forum Epilepsy
    Replies: 4
    Last Post: 07-24-2013, 03:11 PM
  5. Replies: 0
    Last Post: 09-13-2011, 09:42 AM

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.