Another Option and Some Encouragement

April 26, 2009 at 2:02 am


[COLOR=black]There is another option available: therapeutic plasma exchange, also known as plasmapheresis. It is part of my treatment regimen and is quite effective for me. At one point, I used IVIg alone. While it was effective, it was clear that I was going to need large doses frequently to keep me stable. I had better results with plasma exchange.[/COLOR]

[COLOR=black]You might want to ask your neurologist to try it. He may not have wanted to because it is considered very invasive, and rightly so. However, if you are willing to be diligent and vigilant, I think the invasiveness of the treatment is a small price to pay. Why is it considered invasive? If you have large veins in your arms, two 17 gauge needles are used, one in each arm. A 17-gauge needle is very big, and so is considered invasive; it is not like give a blood sample or even donating blood. Many people (me, for example) don’t have veins big enough for such needles. If you are like that, you would need some sort of venous access catheter, which is nearly the definition of invasiveness. For the first round of plasma exchanges, I had a temporary catheter placed. Once we knew that the treatment worked well, I had a permanent catheter placed. It has been in place for nearly 3.5 years, with only minor complications. I think it has been well worth it.[/COLOR]

[COLOR=black]Trying plasma exchange might be better than using prednisone and dealing with further diabetes complications. My opinion, as somebody who has used plasma exchange successfully, and not as a medical professional, is that it would be worth a try. Of course, only you and your doctor can decide which treatment course is best for you.[/COLOR]

[COLOR=black]Once you have talked to your neurologist about it, come back here and I can give you further information about plasma exchange. Other suggestions that I can offer are on the dosage of the azathioprine and on the administration of the prednisone. [/COLOR]

[COLOR=black]The typical dose of azathioprine (after a ramp up to that dose, checking for liver damage during the ramp up) is 2 mg/kg/day. My neurologist and I decided to try a somewhat higher dose, about 2.3 mg/kg/day. That seemed to help me quite a bit. If you weigh more than 110 pounds, you might want ask your neurologist to consider a higher dose. [/COLOR]

[COLOR=black]On the prednisone, you might want to consider what is called a pulse. Under this scheme, you take a week’s worth of prednisone all at once each week. As a diabetic, you would need to be particularly vigilant about your blood sugar for 36 hours or so after the dose and continue to monitor your sugar closely the rest of the week. The advantage to the pulse is that many of the other side effects of prednisone are reduced. [/COLOR]

[COLOR=black]Now, as to having CIDP. The main thing to know is it is a disease to try one’s patience. For example, I have been diagnosed for over 3.5 years, and we are still trying to find the best treatment course for me. I expect that process may take as long as another 1.5 years. As a second example, it could take azathioprine 6 months to show its full effect. You will just have to wait it out. [/COLOR]

[COLOR=black]I mention these things not to depress you, but to prepare you. I understand the frustration and even the panic you can experience when treatments don’t work because I have been there. I wish I could promise you that you will get better. I can’t, though, because I am not God. I do know, however, that it is possible to get better, because most people do, and because I have. Better does not necessarily mean back to what you were before, but it does mean a nearly normal life. I have been very nearly a quadriplegic, and now I do nearly everything I want to do. Your doctor is right, people respond very differently to the treatments, with some having very little improvement for months, and then starting to improve, sometimes gradually and sometimes rapidly. All I can say is give it time.[/COLOR]

[COLOR=black]Godspeed in finding a treatment that works. Suggest plasma exchange.[/COLOR]