Reply To: Insurance Coverage

Jane12,

I guess I should read all of the fora and then answer. I already sent you a reply in the CIDP forum, but let me address some of your prednisone side effect concerns here.

Administration — there are several ways to take prednisone to treat CIDP. One is a pulsed method, in which you take a huge dose once a week. There is some evidence this might be the best route for CIDP, but it is by no means conclusive. Another is every-other-day dosing. The idea here is that the adrenal glands have a chance to recover and there modulate some of the side effects. The last is the standard, once-a-day dose. When I did the pulse method, I took the dose Friday evening. Miraculously, I was able to sleep through the night. I was an especially unpleasant person on Saturday, so I kept to myself. I was more tolerable by Sunday morning. Generally, though, predisone should be taken as a single dose first thing in the morning.

The most severe side effects you can do something about medicinally:
Stomach upset — have your doctor prescribe Pepcid
Bone loss — have your doctor prescribe Fosamax or similar, along with calcium with vitamin D. Have a bone density scan done yearly
Blood sugar — have your doctor prescribe a blood glucose meter, test strips, and lancets and then check your blood sugar daily. Keep track of it so that you know if it is starting to increase significantly. If it does, get with your primary care physician to devise a treatment strategy.

The most severe side effects you can monitor:
See an ophthalmologist every six month to monitor for glaucoma and cataracts. The glaucoma might be treatable. The cataracts may form and you may therefore have to have cataract surgery.
See an dermatologist every two years to monitor for skin cancers
See your primary care physician every six months and follow his/her recommendations for other referrals. Have him/her be especially watchful for cancer and other effects from immunosuppression.

The most severe side effects others can help you with:
Weight gain — have others help you avoid fattening foods or too much food. You may feel hungry all the time. Having others help you with the cravings will limit your calories, reducing or eliminating the weight gain.
Mood swings — warn those around you that you could suffer severe mood swings. Let them know that it is not personal, that the drug you are taking makes you slightly crazy. Some people will be understanding, others won’t. Just do the best you can.

~MarkEns