Hi All!
It's been several months since my last post. Suffice it to say that not a whole lot has changed. It appears I may be at the point where I'll be for a while, if not forever.
I attempted to ween myself off of prednisone about a month ago (with my doctor's approval). That did NOT go well. My symptoms returned in just a couple of days.
The reason I bring this up is for those individuals who hate what prednisone does to the body. It makes the body retain water, gain weight and overall can make a person feel very uncomfortable, especially at high doses. What I would like for people with this condition to consider before coming off of steroids is this: are the side effects of the medication worse than the symptoms of the disease, itself? And, be honest. Is a bit more weight around the middle worse than the inability to walk? Is the often-excruciating pain better than some fluid retention and the need to take some supplements? In my case, the answers favored taking the prednisone.
What we have to do, as CIDP patients and medication, is a benefit to risk analysis. Is the benefit greater than the risk (or side effects, in this case)? We make these decisions, every day. When getting something to eat or drink, when deciding what to wear. When determining where/when to stop for gas. Just with medication and illness decisions, the results can, and often do, have dramatic effects.
Foremost, make sure you talk to your doctor before making any of these decisions. The doctor has prescribed these medications for a reason. Obviously, we go to these doctors because we want their help. Making wholesale changes to their treatment plan without consulting them can be dangerous. This is coming from a nurse who's done it. Not smart. It's kind of like hiring a lawyer, then representing yourself, anyway. Always keep your doctor in the loop of any and all disturbing or uncomfortable side effects or issues. Just don't make the changes before that conversation happens (unless it is something dangerous - like some type of SEVERE reaction. At which point, you should seek medical attention, immediately).
I guess, overall, what I'm saying is use common sense. Talk with your doctor, as he/she is your partner in improving your overall health!
Here's wishing you a Happy Independence Day! I hope the love and comfort of our Lord Jesus Christ shines upon you, your family and our great nation.
Please understand that this blog is not meant as a replacement for the advice of your health care professional. It is for informational purposes, ONLY.
