decided against prednisone
My primary doctor just prescribed a 5mg daily dose of prednisone and my lyme’s specialist in NJ has categorically adviced against the use of steroids in my condition so I made a choice and stuck to no prednisone of any dosage. I still need a doctor that will prescribe IVIG to me and the chances of that happening in Chicago are slim to zero.
The nature of CIDP is that you could be worse and could be better and your symptoms may never be the same and it can take years before the disease has developed to be completely diagnosed.
This past january I was at my worst and clinically I was diagnosed with CIDP since I have taken great care in eating an anti-inflammatory diet and though much better than I was in January I still suffer daily from symptoms.
If you decide to continue with steroids please do the tests the lady in Norway requested you get done this is the SPEP and IPEP it gives an indicator on how your immune system is functioning. The doctor reading the report will need to take into consideration what effect the high dosage of prednisone as well as IVIG have on the report as these should be done before prescribing any treatment.
In my case I had an abnormal activation of the B cells last year in march 2006 as well as abnormal levels of elevated proteins in my CSF and an abnormal EMG/NCV only to find that now when I do have more complicated problems the B cells are back within borderline range and my EMG/NCV was normal and yet I have a problem with speech at times and difficulty walking in additon a paralyzed bowel and neurogenic bladder.
If you decide that steroids are necessary then please consider pulse steroid treatment which would be one dose solumedrol followed by 5 doses of dexamethasone all injections no oral steroid. The combination of long acting and short acting work well in reducing inflammation which is the main goal and is better than just solumedrol alone. My lyme’s specialist worlks woith other doctors on the line with the latest in treatment and reserch options and sofar it is only by her help that I even have a diagnosis and an option for treatment. It is my finding that doctors dont take to well to the advice or diagnosis of other doctors and take it at times as a personal attack. These doctors don’t understand the complicated nature of CIDP and it is highly unlikely that any two individuals with CIDP will exhibit the exact same syptoms. Keeping that in mind your doctor who is your advocate needs to focus on YOU and make sure you are getting better.
If you can show the doctor the DVD from the foundation that clearly shows atleast two distinct lines of treatment one is the oral prednisone and the other the IVIG. It doesn’t mention both at the same time.
My advice stick to the IVIG make sure the infusion rate is slow and you will have very little side effects and stay away from all types of steroids if your body is responding well to IVIG.
My deepest best wishes and prayers.