Interferons, lymphoid radiation & mycophenolate mofetil for CIDP

    • Anonymous
      February 7, 2011 at 12:02 pm

      From the proposed study: “…IV cyclophosphamide, cyclosporine, interferons, total lymphoid irradiation, and mycophenolate mofetil have been proposed as appropriate therapies for refractory patients…”

      In this proposed Clinical Trial, which has been withdrawn because the study author is relocating to John Hopkins Medical Center, the author mentions some treaments I am not familiar with.

      Hopkins is one of the 7 GBS-CIDP Centers of Execellence.

      If you have tried any of these, please share which one and what your experience with the treatment is (was).

      Thank you.

    • Anonymous
      February 15, 2011 at 11:40 am

      and at Hopkins….

      Please share a little more. what is your experience with mycophenolate. My grip strength is 45 left 6 right, by comparison, maintaining 100 sounds great!

    • Anonymous
      February 15, 2011 at 9:02 pm

      Hope you two catch up!

    • Anonymous
      February 15, 2011 at 9:03 pm

      I think you kind of answered my question; 105 #s Grip Strength might BE “great” though I’m sure healthy it was more like 200#s. My distress is I’m losing my legs and the musculsature supporting muy back. I have a long history of sports and traumatic injuries, though- the CIDP might be the Camel’s Proverbial Straw, and, comparatively speaking- I AM doing

      NOW- for your Questions;

      Mucophenolate 2000 mg per day, 2 years now, GOT ME OFF THE STEROIDS, Yeah! ( Prendisone was killing me)

      Johns Hopkins- GREAT PLACE, Dr Cornblath, very knowledgible, Published, on
      CIDP- but I’m certain their Neuromuscular Group, in general can
      Handle you, as well, if not better than a Local Guy.
      They get you in/out while still apearing to care- the
      Parking is closeby and reasonable.

      I’ve corresponded w MANY who have had good results with beta interferon, Insurancew may not cover, and risks are similar to Cell Cept

      Radiation- No experience

      Cell Cept can cause Kidney Issues, makes one super susceptible to infection, can cause Lymphoma/Myeloma, blah blah- but side effects are often less than chemo drugs like Cytoxan, Ratuxant (Sp) etc

      AND PICKING ONE OF THE TOP DOCS for CIDP might have drawbacks that a
      “New Kid” doc might not? (I often wonder if more agresive treatments would serve better, I’m honestly not sure. . .)

      I’m thankful I went to Hopkins, thankful Dr Cornblath took me in and Tried Cepp Cept on me . . . If it has not saved me, it has bought me a couple years

      Hope This Helps

    • Anonymous
      February 16, 2011 at 2:24 pm

      Appreciate your candor and your feedback. I didn’t know (we never know what we don’t know) this- “Generic Name: mycophenolate mofetil (oral/injection) (MYE koe FEN oh late MOE fe til) Brand Names: CellCept”

      In case there are more out there like me, Cell Cept is mycphenolate. Oh, poor me. I should of just looked it up…….

      I saw, am seeing, a ‘new’ kid neurologist. She said ‘…it is imperative that you find a neuromuscular specialist…’

      I lost and/or am losing legs starting with foot drop progressing to loss of thighs and hamstrings (the proximals). Fortunately, I feel stronger since the intervention at Mayo Clinic Minn in 2009 and. emphasis on [B]and[/B], Much more frequent IVIG than ‘normally’ recommended. 2 x week 3 months; 1 x week 6 months; 1 in 2 weeks for several months and then a new 5 day sequence at UCSD followed by 3 days in a row every three weeks- termed a bolus, by one doctor.

      Returned to Mayo and have been put back on 1 x week for 6 months. All muscle strengths I compare ‘subjectively’ are improved.

      Are you only on the immune suppressant? were you ever on IVIG?

      Thanks and good luck to you.

    • Anonymous
      February 16, 2011 at 4:39 pm

      When and hows does your doctor decide to start on immunosuppressant? I am only on IVIG. Have been on it for 1 year. When doctor increased time interval–every 10 days to every 14 days–I went downhill. Also, what is the normal grip strength? My right and left hand=45. Does Cellcept cause hair loss? thx.

    • Anonymous
      February 16, 2011 at 6:24 pm

      Can cause Hair loss, as does Cytoxine, Cyclosporin, Ratuxant, all can cause hair loss.

      Resding these posts two things come to mind; I, maybe shouldn’t complain? b0 Maybe they are off on diagnosis?

      IvIg produced NEGATIVE results (for me)/

      the Mycophenolate has me kindof stabil- they, now are suggestng this “monnoclonal gammopathy IgM paraprotien elevation” is the problem andthat my hopes for getting stronger are much less? Anybody know about this?

      Anyhow, muscles randomly, seem to be effected. I can push, pull squeeze, walk, but stand, hold it, lift, forget it, DOES ANYONE HAVE TROUBLE SWALLOWING?

      I feel like I’m not wining here?

    • Anonymous
      February 16, 2011 at 8:54 pm

      exo, as in ex old surfer, right????

      My case is only perhaps a pinch more complicated than some others. At Cleveland Clinic in 2007 they said I did not have a demyelinating condition.

      At the local neurologist they (two of them) tried IVIG in 2007-2008 for 4 months and then stopped it. One of their comments was that I had already seen their teacher, the guy at Cleveland Clinic So, when I asked for a referral, they answered ‘…what for? you’ve already seen the best…’

      At Mayo, Minn in 2009 the first 3 doctors on my first visit each stated, “no, there is no other medicine you can take.” Now, here’s what my wife says, “yes, but you didn’t have the nerve biopsy results yet.” True.

      So, the answer to your question is that Mayo Minn started me on Imuran (azathioprine) in May 2009 50mg/day for 1 month, then 100mg/day for 1 month, then 150 mg/day on and on and on.

      They cautioned, as did the UCSD Specialist, that azathioprine could take as long as 1 year to be effective. The marker we are watching is the white blood cell count (WBC) to maintain at, near or above 3,000 u/l. Liver enzymes are also watched.

      I don’t recall ‘normal’ grip strength. As bear said, certainly above 100.

    • Anonymous
      February 16, 2011 at 9:21 pm

      Hey, Bearman,

      I reckon we all whine and then when we are not whining we are winning. complain away, it still sux. Let it all out. then you’ll feel better.

      You gotta fight, but not to extremes. You gotta accept what you go, but not until you know you got it. And then? Fix it. A continuous ‘oh, poor me pity party’ will only get you more of that.

      It works for me to focus on what I can do. And, on getting a confirmed second diagnosis. Well, I’d like a confirmed 2nd opinion of same treatment plans too! I think I’m dreaming there.

      I had trouble swallowing in the mid 1980’s. Mostly gone away now, thank goodness. In that time frame I was hospitalized numerous times for foreign body obstruction. Above (or below) the Heimlich maneuver choke point, thankfully. Whichever, I could still always breathe.

      I do recall reading about IgM trouble here, but, bless me, a search of IgM returns ‘not found.”

      Maybe one of them will pipe up.