Thursday, November 11, 2010

Update on the Estradiol experiment

Today was inconclusive. I took a 2 hour nap, true, but I am not positive what caused the fatigue.

Today was Mom's birthday and my sister came over and took us all out to a local ice cream shop for hot fudge sundaes at noon. I'm not used that that kind of sugar overload midday. Typically that kind of sugar or carb intake will have me zonked within an hour.

So, I'm scrapping today as any kind of definitive test of the Wal-mart generic version of Estradiol and the possible fatigue inducing qualities of the inert ingredients.

Tomorrow I'll take the medicine again and try to make it a normal day as far as all the constants (like a NORMAL diet) go.

I'll report back when I've had another day to evaluate.

The Estradiol Experiment Continues

Since I last left you, I haven't taken my newly filled Rx of Estradiol any more after suspecting it was causing me extreme fatigue.

I spoke to a pharmacist who pointed out that although the Rx I had from Walgreens (that didn't make me tired) has the same active ingredient as the Rx from Wal-mart (which may as well be sleeping pills), the inactive ingredients may be what's bothering me.

I had too much stuff to do the past couple of days to risk zonking out in mid-chore for a 4 hour nap.

Today, however, I started back on the medicine at 9am to see what happens now. I was either a) MS fatigued, b) tired from having company, or c) adversely affected by the steroids inert ingredients**. We shall see if it was the medicine as that will be the only difference between yesterday and today. Yesterday I was not overly exhausted.

I wish that I had taken time to consider that today is Mom's birthday BEFORE I tried experimenting again. Family is coming over and I wanted to fix her a nice dinner. Hopefully the medicine wasn't the issue and I will be fine.

If not, I have already sung Happy Birthday to her and she'll be surprised with a nice Digiorno pizza tonight.

**PLEASE NOTE: I have no idea what possessed me to write "steroids". I haven't done any of those since 2007 and you probably are wondering where the heck that came from. I left it in place and struck it out, with the correct words coming after it so you won't think you were seeing things if you come back to read again. What was I thinking??

Monday, November 8, 2010

Blood Pressure Medicine and MS

How could this be a year old and I never saw it?

A drug commonly used to treat high blood pressure may also double as a multiple sclerosis treatment.

A new study shows the inexpensive blood pressure drug lisinopril blocked development of multiple sclerosis in laboratory mice bred to develop the disease. And when the drug was given to mice with full-blown symptoms of multiple sclerosis, it reversed their paralysis without affecting their overall immunity.

Of course, big pharma probably was aghast when this news hit the wire. We CAN'T have a cheap alternative to the established DMDs! This would be unacceptable -- especially one that does not alter the immune system and comes in the form of a PILL!

Lisinopril is not without it's drawbacks, however...

SIDE EFFECTS: First doses of lisinopril can cause dizziness due to a drop in blood pressure. Lisinopril can cause nausea, headaches, anxiety, insomnia, drowsiness, nasal congestion and sexual dysfunction. Lisinopril should be stopped if there are symptoms or signs of an allergic reaction including feelings of swelling of the face, lips, tongue or throat. Severe allergic reactions (anaphylaxis) and hives occasionally occur. Rarely, lisinopril may cause a drop in red blood cells, white blood cells, and platelets.

Lisinopril can impair the function of the kidneys, and every person taking this medication should have their kidney function checked.

My first question would be: "That's great! But what does someone with LOW blood pressure do? Are they not a likely candidate for this type of treatment?"

I'm just amazed at all the different things, like LDN, CCSVI and now apparently this blood pressure medication that are being studied and what the ramifications might be for those of us with MS.

This is why it's so urgent that we do our best to help fund research into alternative treatments. Big pharma is not going to do it unless there's a billion dollar reason.

By the way, if you haven't done so, please go vote for the Pepsi Refresh Everything idea to Establish a Non-Mainstream MS Research Institute.

Estradiol update

Yesterday I forwent (is that a word? Okay, how about skipped?) my Estradiol in a little experiment of my own to see if it had any effect on the extreme fatigue I have been suffering for four days.

Turns out I needed no nap yesterday and didn't have that weighted down, someone-pull-me-from-the-deep feeling of oppressive exhaustion I had felt for the previous 3 days.

I had to go to Walgreens to pick up a few things and asked the pharmacist what she thought. I explained that I had been on a Walgreens-filled Rx of generic version of Estradiol for a month and had no issues, but then I went to Wal-mart and got their cheaper refill (it was hard to confess this but I did) and have had the fatigue issues since.

I did mention that I also have MS so I wasn't sure if that was the issue and it was just coincidental that I started having problems on or about the same day as starting my new bottle of pills.

Her response was interesting. She said that while the active ingredient was still the same, different manufacturers use different inert ingredients so there was a possibility that I was experiencing a side effect of one of them somehow.

I think I am going to wait until Wednesday to start taking the Estradiol again. I have an urgent need to be awake and alert for the next two days and don't want to continue my experiment until sleeping all day is an option I can afford.

I am very curious to see if I just had MS fatigue from company overload that required a few days to balance back out, or if it really is the new version of the same old pill causing me issues. If so, that sucks. The pills from Wal-mart are insanely cheaper than those at Walgreens. $17 for 30 days at Walgreens vs. $10 for 90 days at Wal-mart. When you're broke and have no insurance, those kinds of things matter.

Sunday, November 7, 2010

Vote Now to Help Fund Research for CCSVI and LDN

My friend and former neurologist, Dr. Daniel Kantor has dedicated his life to Multiple Sclerosis. He is the singular most passionate person I know who stands as an advocate for those of us with MS.

His latest venture in pushing toward finding the ultimate Holy Grail of a cure is to try and get funding for a non-mainstream research center that will explore treatment options like LDN and CCSVI.

He is SO passionate about this project that he is willing to donate his own time to see this to fruition. Quote from the project notes:

Budget Notes: The budget will not cover Dr. Kantor's salary, which will be donated pro bono by him to the project. The budget will not cover services that we are applying for from in-kind donations. The budget will not cover administrative costs, which Neurologique will donate pro bono to the project.

I, for one, cannot see a better way for Pepsi to distribute it's Refresh Everything grant money, but you might say I'm a little biased.

Please watch the video below and cast your vote now before it's too late. Funding for research that doesn't necessarily have a goal of padding big pharma's pockets is rare indeed. We MS patients have a chance to take a proactive role and cast our vote to help better our own choices tomorrow.

So please take a moment and vote today!