Article on Frequency? No, study the patient’s response.

September 29, 2010 at 11:19 pm

Let me start with my frustration. To say there is a total dose of say, 100g, has very little meaning. Whew, now I said it.

And here is why I say it. The ‘standard’ dose is .4g per kg where g = grams of IG fluid and kg = your body weight in Kilograms. Now, the infusions of Ig that I’ve had were 10% solutions. What does that mean? I’m about 175 lbs = (about) 80kg, therefore for my 32 grams of Ig, there are 320 total grams of solution.

As a non-chemist and certainly not a math whiz, I can only tell you that my 32 grams worth come mixed in a 300 ml bag. Or a bottle of 300 ml, two bottles of 10ml, and one bottle of 2.5 ml.

So, what’s the point? For most of us the initial dose is 5 days worth, or .4g/kg each day, for 5 days.

I’ve been to Cleveland Clinic, Ohio where they said IVIG would probably not be successful. I’ve been to Mayo Clinic, Rochester where they said my IVIG was neither often enough nor aggressive enough.

Based on what? Some report written somewhere? No, based on my own personal situation.

Jump forward in time to right now. I am seeing a specialist at UCSD La Jolla, Ca. He ordered 5 days of treatments once per month for three months.

However, I was to be re-evaluated three weeks after the first session. No, he did not run any electrical or laboratory tests. He merely tested my limbs’ strength with his own hands prior to the first set. After the first set, on the 3 week appointment he tested me again. I was markedly stronger in leg lifts, thigh lifts, arm shrugs and head tilting.

He immediately canceled the next two 5 day treatments because results had been demonstrably obtained. He modified the schedule to 3 days, in a row, every three weeks. Guess what, I was on 1 day every week. Isn’t that the same, about, dose?

“No,” he said, “I want you to have more all at once, more often.”

So, what’s my point? An on-line report of somebody’s, or somebodys (plural) results doesn’t do us individuals any good. The doctors all have a push me-pull me scale to measure muscle strength. If you are on IVIG and are not getting stronger, take action.

By the way, at least he (UCSD), Chicago and Mayo agreed that results from Imuran would take 1-2 years.

In addition, he (UCSD) looked at my labs, specifically the lymphocyte levels, and said “No, I don’t want to be any more aggressive on knocking down your immune system. Let’s leave it at these levels.”

My final answer? Don’t look for reports, look for a specialist.