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        • May 16, 2019 at 9:08 pm


          Alan Smith

          Guest

        • #2478

          I have recently been diagnosed with CIDP. It is most noticeable in my hands with around 85% loss of strength in my grip and fingers.

          I have been placed on a treatment plan which to my mind, doesn’t seem in line with the research I have read around standard treatment plans.

          Would you mind taking a look at the following and tell me if you think I am being undertreated.

          I have been prescribed 60mg Prednisone daily for 4 weeks, then 40Mg daily therafter, with azathioprine 150mg.

          I won’t be seen again by specialist till September. My treatment started 2 weeks ago, 1st of May. At this stage my grip strength is still declining everyday (currently have a grip strength of around 6kg which I’m monitoring daily and is declining about 2% a day on average. I use this as a metric to gauge if and when improvement starts).

          My concern is that the best practice seems to suggest that 1 mg per kg of body weight for 2 to 3 months, followed by slow tapering. An aggressive treatment plan seems to also be considered best.

          I weigh 88kg, 52 years of age, in excellent health otherwise and tolerating prednisone very well (for the last 2 weeks since being on it anyway).

          In clinical trials, few people have responded after only 4 weeks, so it concerns me that I am being treated (and at partial dosage) for only 4 weeks, and then being tapered down by 20mg in one step.

          Would love to know if my concerns are justified or not..

          Regards
          Alan Smith

        • May 29, 2019 at 6:21 pm


          Gareth Parry

          Keymaster

        • #2513

          It is extremely difficult to comment on a treatment plan when one has not seen and examined the individual patient. Furthermore, there is not a universal consensus on how to treat CIDP. Steroids, such as prednisone, IVIg and plasma exchange have all been proven to be of benefit but there are disagreements are about the best way to administer them. If steroids are used, the most common strategy is to use them daily at a starting dose somewhere between 50 and 100 mg. Many neurologists combine that with azathioprine because there are many side effects of long term steroids and they believe that azathioprine enables them to reduce the steroid dose more quickly but the evidence to support that is not good. So, I can say that your treatment plan is not completely out of line with what is commonly used. However, I am concerned that your strength is continuing to decline which is of concern regardless of what treatment or regimen is used. It is still early; you have been on treatment for only 4 weeks, but if the decline in strength continues you should try to get an earlier appointment with your neurologist to see whether a different approach is justified. That could mean a higher dose of daily steroids, a much higher dose of pulsed (i.e., once a week) steroids or a switch to IVIg.

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