Saturday, March 12, 2016

The Truth About Xolair

One of the highly inaccurate things I saw reported on this week was at Alternet. One of their writers did a piece about the drug I was on for just shy of eight years - Xolair. The writer did a grave disservice to the many asthmatics out there by their allegations against the drug and the pharmacy company.

They alleged that Big Pharma was intentionally ripping people off with Xolair because of the insanely high cost of the drug and that doctors were prescribing this dangerous drug for anyone that even slightly wheezed once.

Here's the truth: Yes, the drug has a 'Black Box' warning from the FDA. Yes, it very slightly increases your chance of cancer. Yes, some folks on it have had strokes and heart attacks. But, as my favorite pulmonologist used to say that the population of Xolair users were much sicker than the average asthmatic to start with so you were automatically going to see higher rates of heart attacks and strokes. Add in the fact that epipens can bring on both of those conditions as well as severe asthma attacks alone can cause a stroke or heart attack and you're in the high risk group for those things in the first place.

He thought that the risk was likely less than what was reported because severe asthmatics are already prone to higher rates of stroke, heart attacks and death in the first place.

Another truth bomb debunking that article. They are claiming that doctors are willy-nilly writing Xolair scripts for anyone. Seriously? You're more likely to be able to get either Oxycontins or Adderal by the handful from your doctor than Xolair. It's an injectable drug of last choice. That means they've tried you on every available asthma drug in the known universe with no effect before they can even considering putting you on it. Before Xolair I was on freaking Methotrexate, a type of chemotherapy,  for over a year because everything else had been tried and failed.

You have to have high IgE rates in your blood before you're considered a good candidate too. Normal is a 100 or lower. When I was put on Xolair my IgE rates hovered around 27,000 and I was ending up in the ER two or three times a week in a respiratory crisis with an epipen hanging out of my leg.

Then there's dealing with your insurance company, who likely as not will be demanding a pile of tests, from blood and skin allergy testing to all sorts of other things before they'll consider it. In my case the insurance company decided it would be cheaper to pay for the drug than to have me running up huge hospital bills from being in the ER like clockwork and sometimes waking up intubated in the ICU.

Once you get your prescription you'll find that the few mail order pharmacies that ship Xolair are going to make you jump through hoops just to get the stuff. Every time you have an order due to ship to your doctor they'll want to speak to you first, question you about any possible side effects, sometimes order tests before they ship and as always, extract your credit card to pick up the copay for this pricey tiny vials of white powder that gets turned into a paste and injected into your arm at the doctor's office.  The security of Fort Knox.

It's a pain in the ass for the doctors office to get, store and inject you with. My doctor had me coming in so often for the shots that he decided to wave all copay fees for me. Does that sound like a greedy doctor trying to milk and bill for every single thing? Nope.

When they start you on Xolair you are told it's Black Box and why. I had to sign papers stating that I understood the risks and accepted responsibility for risks. I did it. You know why? Because at that point I was so sick with nearly constant allergic asthma that if my doctor had told me to eat a bowl of cat turds daily to cure it I would have said 'Pass the tabasco sauce please and hand me that spoon.'

For me it was the answer, or at least it was for nearly eight years. While I still had asthma and had attacks when exposed to allergens it gave me my life mostly back. Instead of walking past someone eating peanuts or smoking or wearing a very chemically laden cologne and going into a life threatening anaphalaxis reaction I merely coughed and wheezed a little bit and moved on past.

I had very few side effects. I do not have cancer. I have not had a heart attack or a stroke. But the sad fact with Xolair is for most patients it just suddenly stops working between the two year and five year mark. For me it worked until about eight years and I had to stop the drug. Since that time I've been tried on a pile of newer drugs, including a couple of other biologics like Xolair that are experimental right now with little success. I'm a patient at the Johns Hopkins Allergy and Asthma Research Center and also at the NHI asthma drug trials. So far I'm back to avoiding things and carrying my epipen. Thankfully my IgE levels haven't gone back up to scary high numbers. The Xolair bought me some longer term relieve apparently.

You see all those ads out there for 'biologic' medicines for different types of immune system illnesses like RA, or Crohns disease and a host of others? All of those medicines came out of the research for Xolair.

The drug companies might charge too much and push some of their meds a little too hard, but for those of us without other options we're informed and ready to try the drugs of last resort if we get sick enough.

I'm waiting for the next big thing. I've already been ruled a poor candidate for Bronchial thermoplasty and none of the new classes of drugs are working well for me. They have to test these treatments on some folks, why not the ones of us open to it?

If you've stumbled here from a search on Xolair because your doctor is talking about treating you with it please know that it does work well for some people. You get used to having the shots after a few times. There are worse things, like dying from an asthma attack.