Have CIDP and Diabetes?

    • May 7, 2017 at 4:41 am

      I was wondering if anyone here had CIDP and Diabetes because it does change the treatment options as my Neuro is hesitant to put me on Prednisone for more than five days as it raises my blood sugar.

      Some things I have read seem to allude to CIDP being worse in those with Diabetes and that Rituximab might be a better form of treatment.

      My Diabetes is mild enough not to require anything other than watching my diet, but I have complications that should only happen in those who have had years of uncontrolled disease: cataracts, retinal bleeding, a skin infection bad enough to require a skin graft.

      At present, I can not walk. The muscles in my lower legs and hands have shrunken. I lost the ability to walk about five days after being hospitalized for the skin infection, but I couldn’t get the doctors to investigate why. They were too anxious to send me off to a SNF to recover from the skin graft.

      I was discharged at the insistence of my insurance company after he skin graft healed, but I was not able to stay at home as I couldn’t stand up to go to the bathroom. The paramedics were called and the said they needed to evaluate my ability to walk. I said if they would stand me up and not let go of me, I would try. Well, they let go of me and I wound up on the floor with my foot totally dislocated at the ankle.

      So back to another hospital. Before sutgery, a neuro was brought in to revaluation me as I had been told in 1993 that I had Multiple Sclerosis. Before ny ankle was filled with metal plates and screws, they wanted a new brain MRI. The result of that was the Neuro said I had something but it wasn’t MS.

      The neuro said he wanted to do further testing, but again the insurance was calling the shots and I was discharged to another SNF where the staff doctor did his best to try to kill me by prescribing drugs on my allergic list six times. The staff also refused to make a follow up appointment with the Neuro. It took over nine months to finally get in to see my current Neuro, three more months to get he CIDP diagnosis and another four months to get IVig, and I have only had one five day course six weeks ago and five days of Prednisone two weeks ago.

      I have paid for nursin home care for the last 13 months because I need 24 hour care. I just want to be able to walk enough to get to my bathroom. Because of nerve damage to my broken foot, it healed with a contracture which does not allow it to flatten when walking, and the skin split open under the little toe which has taken months to heal. I am seeing an orthopedic surgeon on Tuesday for surgery or bracing options.

      My savings are almost gone and I won’t qualify for Medicare yet. I just want to go home, but getting everything treated is just so hard when doctors don’t listen.

    • jk
      May 7, 2017 at 5:00 pm

      Have you tried contacting your State or County Ombudsmen? Ombudsmen are state certified individuals who resolve the problems of residents of nursing homes and residential care facilities for the elderly.

      • May 18, 2017 at 1:46 am

        I have CIDP and type 1 Diabetes. Steroids have never been considered by my treating neurologist because of its effect on blood glucose. I have had some benefit from Rituximab and the plan was to have it every 3 months but in Australia it costs a lot of money ( insurance won’t pay for it) so now I am on cellcept.
        It’s extremely important to maintain tight blood glucose control with a HbA1c in the 4.6- 5.5 range to minimise the chance of complications. I can recommend a book called Dr Bernsteins Diabetes Solution. Dr Bernstein is an Endocrinologist in New York State who himself is type 1 for over 60 years. He maintains normal blood glucose and has reversed complications in himself and his patients. A useful YouTube seminar are any by Dr Troy Stapleton.

    • May 7, 2017 at 5:07 pm

      JK gave good advice about contacting your State to get support. You may wish to read this similar recent discussion for other ideas too:

      Prednisone gave me type II Diabetes, amongst several other afflictions. It took close to 9 months for the Diabetes to abate after stopping the prednisone.

      The classes of drugs used to treat CIDP are strong (needs to lower your immune response and relieve inflammation) and all have varying side affects. One that does not have Diabetes as a side affect is CellCept (Mycophenolate Mofetil) or the newer version Myfortic (Mycophenolate Sodium) in clinical trial here:

      Many CIDP patients have side effects from primary treatments. In these cases immunosuppressive drugs such as cyclophosphamide (Cytoxan), cyclosporin (Sandimmune), tacrolimus, mycophenolate mofetil, azathioprine (Imuran) and type 1 interferon (INF-1?) and IFN-beta can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies. Alternative treatments are discussed here:

      My last maintenance treatment with Rituximab (Mar 2017) was billed at $19.4K before Medicare Part B reductions. I end up with a co-pay of a few hundred dollars. There are many discussions about Rituximab in these forums. A recent discussion that includes my experiences taking the drug is here:

    • May 7, 2017 at 10:09 pm

      JK – Haven’t contacted anyone about the SNF situation. Just complaining about the situation in-house for my previous SNF got me “black-balled” (term used by hospital social worker who was unable to place me in any SNF in my large hometown) because the SNF community does contact each other. My complaint was about their incompetent staff doctor and I just wanted my own doctor to prescribe for me. They also would not make recommended specialist referral appointments. I can’t screw myself anymore than I already am as I need the care.

      My main objective right now is to walk again so I can go home. Fixing my foot is a big issue, but having the strength to just stand is big, since I don’t know if it is the CIDP or the anemia making me dizzy. My primary doctor is provided by the facility and has been pretty invisible.

    • May 18, 2017 at 12:13 pm

      I just had my last Solumedrol of the six day course. My blood sugar was ranging higher than it was when I took the Prednisone last month. It has been a major battle for me trying to get what I consider appropriate treatment for all of my medical problems. I have gone from getting blood sugar checks four times a day down to once a day, twice a day when on the steroids. When I am in control,of what I ear, I have gone up to three weeks without needing any insulin. I am currently living in a skilled nursing facility, so I have to eat what I am offered.

      I also have had eye problems that have been treated with Prednisone eye drops and implants in the eyes. Those have also messed me up in putting on weight no matter how restrictive I am with my diet. I really don’t understand why they would treat problems caused by high blood surgery with drugs that cause high blood sugar. I have had cataracts and retinal bleeding.

      My neurologist seems to be waiting on having the diagnosis of CIDP confirmed by the University of California at Irvine Neuromuscular Center, which I have been waiting for three months and still have three more months to wait.After having the five day hospital stay cost close to $300000, the insurance company doesn’t want to pay for an expensive treatment for an unconfirmed diagnosis. Both the Prednisone and the Solumedrol showed definite improvement but only lasting about two weeks. Living in a nursing home is very expensive and my money will run out soon, so I need to be able to walk so I can got home. Having had treatment delayed for a year and a half has been costly.

      Thanks for you reply, Bryce. I think that I will probably wind up trying an immunosuppressant once I get a firm diagnosis.