update: the red, red rash.

I forgot to mention something about Mr. M's red, red rash. While we were at the Miami VA, I decided to ask the brilliant neurologist there what she thought about his rash. She had an idea. (Did I mention she is BRILLIANT?!) Her thoughts:

NIACIN.

Now how easy was that?! She was pretty sure that it WAS an allergic reaction, and the Niacin that Mr. M takes for his cholesterol was her first choice in culprits. Her second was Depakote, but she said the symptoms sounded exactly like a reaction to the Niacin. I am so GRATEFUL to have met this woman. She is just the woman I want for my husband's care.

tysabri.

Mr. M has decided to take Tysabri, a newer MS medication that was at first approved by the FDA, then pulled off the market, and is now back on the market. He was on it once before, but it became too expensive for him to continue the therapy. But since Mr. M is a veteran, he has the privilege of getting all of his health care done at the VA. This is both good and bad. Good, because his health care is free,and as many of you may know, MS is an EXPENSIVE disease. Bad, because we have to drive to the Miami VA once a month in order to get this medication. In the past, we have been charged $5000 a month for this treatment, but now that Mr. M is using the VA, we are able to get him the treatment he wants and needs.

Yesterday we made the long, long trek to Miami. It took us three hours and we saw a total of 5 car accidents, 2 of which were cars that had flipped. It was pretty scary. We had to be there by 9:30 am, so we left our house at 6:00, dropped off the kiddos, and went on our way. We arrived by 9:15, but parking was TERRIBLE, so it took almost 30 minutes to find a place to park. We eventually made it in, and started the process for his first treatment.

Tysabri is considered a biologic therapy, but must be administered in the chemotherapy department of a hospital, by a specially-trained nurse who has been "TOUCH" certified by Tysabri (the company). We spent an hour filling out paperwork and talking with the doctor, and then waited some more while the pharmacy mixed up the medication and brought it to us. (The medication does not last long once it has been mixed up, so the patient must be in the chair waiting for it before the pharmacy will mix it.) Then Mr. M was given his IV and the Tysabri drip began. The drip takes about one hour, but the patient must wait for another hour afterwards, just for observation. We finally arrived home by 5:00, and overall everything went pretty smooth.

As with any medication, there are some risks associated with Tysabri, which both Mr. M and I have fully considered. The biggest risk is an infection in the brain, called PML, that can develop while taking Tysabri. But his doctor is going to be monitoring him monthly and we are hopeful that he will not contract PML. His doctor is a genious. She is so smart, and deals only with MS and Tysabri, so she is pretty much an expert. She has a wonderful bedside manner and is so personable. We just love her. I only wish we had met her sooner.

**If you would like more information about the drug Tysabri, click here:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/index.xml

return of the red, red rash.

Well, it happened again. That red, red RASH made its ugly appearance last night! I took pictures, but the photos just don't do it justice. Poor Mr. M looks awful in them too.



His face looks swollen. The white patches that you see on his chest are places where the rash hasn't affected his skin. Yes, he is usually that white!



Just keep this better image of him in your head, ok?



So, he had the burning, hypersensitive sensation, along with the droopy, "old man" face. Weird, right? Oh-and he saw his neurologist. Guess what she said..."I don't know what it is. You could stop taking one pill at a time to see if it was an allergic reaction." (Yeah, I don't think it is an allergic reaction!) "You could drive to the ER the next time it happens and see what they say." (Umm, first of all, we are NOT driving over 75 miles each way to the VA hospital. Second, if you don't know what it is, what makes you think they will? All they will do is run your typical ER tests and find nothing, and therefor do nothing. NOT worth it.)

Ugg. Can you tell the VA drives me crazy?! THAT is a whole other post entirely! So again I will say, if you have ANY idea as to what this may be, please share!