DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them.

Monday, May 21, 2012

Shots or side effects, pick your poison. Really, pick your poison.

A post on Facebook asked What are everyone's thoughts on the concept (let's keep this conceptual) of a Once-a-year MS drug? Well, I am on this not-so-conceptual drug, and it was interesting to see how long it took before side effects were considered. Most MSers know that a side effect of some of the newer, potentially more effective treatments is PML, a brain infection that can cause death. The older treatments are the shots we give ourselves. I have scars on my thighs from mine, and they make most people sick, experiencing flu-like symptoms. So even with the most mainstream established treatments, MS patients are expected to make themselves sick for their health. Here's my responses to the post:

I know you want to keep this "conceptual" but I am in the Alemtuzamab trial (new use for chemo drug Compath) and it is an annual infusion. First year 5 days, second year 3 days. Extension trial for 3 years with infusions for exacerbations only. PML ITP is still a side effect, so yeah, trade your shots for death or permanent brain injury. Also, at least one in 4 are getting thyroid disease, "but it's treatable." My endocrinologist (I had to get because I'm the 1 in 4) has never seen such wacky test results. In the past year, I've been hypothyroid, tested positive for Hashimotos, became hyperthyroid, tested positive for Graves, have to see a special eye doctor for that because you can see the whites of my eye above my eyeball (go look at your eyes, I'll wait) and I might need surgery to correct it if the inflammation doesn't go away on it's own after a couple years. I have also developed a ridiculous number of food allergies during the time I've had MS. I was previously on Avonex, then Betaseron. 

on the upside, although I am pretty open about having it, most people are surprised to find out, because I don't look sick. ;) Most commonly I have vision issues (random blurriness mostly), numbness (especially in the fingers and toes, but randomly elsewhere and every couple years from the ribs down) and of course, a lot of fatigue and some holes in the brain issues. I exercise, generally not strenuously, and have been improving my diet over many years--more than I wanted in the past year with the allergies. :) I don't know if the treatments I've gone through changed anything or not. My dad (who I never knew) had MS with serious mobility issues, so I don't know that I would have done anything differently than I did. None of of should regret what we've done--make the best decisions based on the information available at the time, and don't look back!

It was time for my monthly monitoring survey and thought you might like to see what it looks like. I hope you're not eating when you see the photos.

Welcome to your Care-MSSM Monthly Monitoring Survey. You will be asked some questions about bruising, small spots called petechiae, and bleeding. These can be signs of a low number of platelets in your blood and a bleeding problem called ITP (Immune Thrombocytopenic Purpura). At any time, if you have these symptoms, please call your study doctor right away. If you cannot reach your study doctor or staff, contact another doctor right away or go to the Emergency Room.

Each question has a simple "Yes" or "No" answer. Please select the appropriate response for the question. After you have answered all of your questions, click the "Next" button to submit your answers. At the end of the Survey, you will be given the opportunity to review your responses. 

  Q1. The first questions are about bruising. Do you have any of these signs:
        Q1.1. Bruising more easily than you normally do?
         Yes      No
        Q1.2. Bruises that you can't explain?
         Yes      No
        Q1.3. Blood filled blisters or bruises in your mouth?
         Yes      No
Q2. The next question is about petechiae. These are very small, red to purple spots. They can be scattered all over your body or be only in one area. Below are pictures of petechiae (tiny spots) and bruises (ecchymoses) on the ankle and foot.


        Q2.1. Do you have any petechiae on your skin or in your mouth?
         Yes      No
Reminder: If at any time you have had an unusually bad headache, especially if you also have nausea, vomiting, weakness, confusion or seizures, go to the Emergency Room right away. These symptoms could be from bleeding into the brain.

  Q3. The following questions are about bleeding. Do you have:
        Q3.1. Blood in your stool (bowel movements)?
         Yes      No
        Q3.2. Stool that is black and sticky like tar?
         Yes      No
        Q3.3. Bloody vomit or vomit that looks like coffee grounds?
         Yes      No
        Q3.4. Bleeding of your gums that is new or hard to stop?
         Yes      No
        Q3.5. Nose bleeds that are new or hard to stop?
         Yes      No
        Q3.6. Blood in your urine?
         Yes      No
        Q3.7. Bleeding that is more difficult to stop than usual?
         Yes      No
        Q3.8. In the past month, was your period (menstrual bleeding) heavier or longer than usual?
         Yes      No

Monthly survey done--all no answers. Life is good, don'tcha think?

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