Sunday, October 25, 2009

CIDP ... Rocky's blog

I copied this from Jenna's Lyme Blog ... some interesting info re the newest and most effective of the IVIg infusion agents. I need to keep this on hand ...

Gamunex is contraindicated in individuals with known anaphylactic or severe systemic response to Immune Globulin (Human). Immune Globulin Intravenous (Human) products have been reported to be associated with renal dysfunction, acute renal failure, osmotic nephrosis and death.

Patients should be instructed to immediately report symptoms of decreased urine output, sudden weight gain, fluid retention/edema, and/or shortness of breath (which may suggest kidney damage) to their physicians. While these reports of renal dysfunction and acute renal failure have been associated with the use of many of the licensed IGIV products, those containing sucrose as a stabilizer accounted for a disproportionate share of the total number does not contain sucrose.

Glycine, a natural amino acid, is used as a stabilizer.

There have been reports of noncardiogenic pulmonary edema, rare reports of hemolytic anemia, and very rare reports of aseptic meningitis in patients administered with IGIV. Thrombotic events have been reported in association with IGIV. Patients at risk may include those with a history of atherosclerosis, multiple cardiovascular risk factors, advanced age, impaired cardiac output, and/or known or suspected hyperviscosity. The most common side effects noted during clinical trials included headache, vomiting, fever, nausea, rash, and back pain. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088.

As with all plasma-derived therapeutics, the potential to transmit infectious agents cannot be totally eliminated.

Thursday, October 15, 2009

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Saturday, October 10, 2009

CIDP ... Rocky's blog

Well, it's been awhile. Which means things have been going along pretty much 'as usual'.

Not any more, unfortunately.

I've had joint pain in my right hand. I thought that was probably a result of some sanding I'd been doing on a cane I wanted to refinish. Well, no ... it's the disease. After checking with others in the same boat as am I, I find that gnarly rheumatic looking hands are not at all unusual.

So I have more of that to 'look forward to'. Right hand, of course ... me who is so terribly right-hand dominant. Bummer!

But there's more ... as the TV pitchmen always say.

Now the numb shins are moving upward. Well, not the shins, of course! : ) The shins and outward sides of the lower legs are numb. Now, along with the "exercise burn" on the fronts of my thighs, there is numbness on the outward sides.

I have been in touch with a fellow in North Carolina whose CIDP is similar to mine, though his is somewhat more advanced than mine and has been stable for something like 17 years.

He stresses movement, gentle movement ... yoga, for instance. Something to keep the muscles and tendons from shrinking/tightening and making everything even worse. Makes sense. I must check out the pool therapy for arthritics offered by the YMCA. This, of course, means that I must find the extra funds and I must manage somehow to keep either my old car or some other used car that'll keep going and get me there as the YMCA is some distance from me.

Anyway, that's where we are now ...

Oh ... almost forgot ... also the dizziness at times. Apparently that happens as well, though I'd prefer to lay the blame on the medication, the neurontin.