[Originally written 16 DEC 2009]
Four months ago yesterday, my wife ("C") was discharged from our local hospital after being newly diagnosed with Wegener’s Granulomatosis. C’s rheumatologist, Dr. Maria E. Darland, told her that she would be able to "re-enter the world" in approximately six to eight months after treating her condition over that period with prednisone and cyclophosphamide. Unfortunately, after about a month and a half, C’s liver panels showed the onset of liver damage and she was taken off of cyclophosphamide in order to try to prevent any major, permanent damage; this was bad news because up to this point, her condition was responding well to the combination of the two drugs.
Weeks passed as C’s liver recovered and her liver panels improved. We were growing increasingly anxious because we knew that C could not continue to take the high dosage of prednisone she was prescribed without suffering further complications. During a follow up at the end of October, Dr. Darland came to C with news of a new yet-to-be-FDA-approved treatment for her condition: Rituxan. Dr. Darland learned of the use of Rituxan for the treatment of WG at a conference that she had recently attended. After reading the drug information that Dr. Darland provided us and weighing the risks and benefits, we opted to pursue the treatment. However, before treatment could begin, my health insurance needed to authorize it; if they would not, we would need to petition the drug manufacturer to see if C could get the drug gratis (or at least at a reduced rate – apparently, this medication is expensive).
The insurance company denied the initial request. Dr. Darland suggested that we write a letter of appeal, citing case studies and explaining the change in C’s quality of life since she had been diagnosed with WG; Dr. Darland’s office would also appeal to the insurance company on our behalf. C sketched out a letter and I applied quite a bit of polish to it. Dr. Darland then provided some edits for the letter at another follow up appointment. We never had to send that letter.
That same day, I was home early from work. I went to the mailbox and found a letter from the insurance company that had its envelope hand-addressed to C. I called her cell phone, left a voice mail, and sent her a text message to call me as soon as she was able. C returned my call (she had been getting blood drawn for more lab work at the time) and I told her about the letter. I opened the letter and read it to her: the treatment had been approved! I gave C the pertinent information and she went back to Dr. Darland’s office with the good news. C made a new appointment to start treatment on December 1, but she received a call a day or two after making that appointment telling her than a cancellation had occurred and that she could start treatment a week earlier; she jumped at this chance, of course.
The Tuesday of Thanksgiving Week, C had her first treatment with Rituxan. I stayed at Dr. Darland’s office with my wife for a few hours while the nurses got her set up with the IV and helped make her comfortable. Other than a few hot flashes (which were expected with this medication) and the terrible time the nurses had in finding a good vein to insert the IV needle, everything went pretty smoothly. The following treatment sessions also went off without a hitch.
Following C’s final treatment session, Dr. Darland advised her that she could now go out without the medical mask but that she should take care to avoid large crowds and sick people while her immune system rebuilds itself. C will most likely have to undergo another round of treatment in about six months, but in the meantime she is free to return to work and live a relatively normal life again! This would not have been possible without Dr. Darland persuading the insurance company to allow her to treat C’s WG with Rituxan.
We are very thankful for Dr. Darland and all that she has done to help C’s fight against WG. Now, I just hope that the FDA sees the results of the clinical trials for Rituxan’s efficacy as a treatment for WG and approves it so that others suffering with WG who are not responding well to the standard treatments can have a chance to return to something close to a normal life. In fact, I hope that the FDA approves Rituxan as a standard option for treating WG.
[Added 30 DEC 2009]
It has now been two weeks since C’s final Rituxan treatment and Dr. Darland says that her immune system has returned to normal levels. Dr. Darland has also changed C’s level of prednisone intake down to 15mg (from her maximum of 60mg). We’ve been out to dinner or just to walk around Olde Town Fredericksburg a few times and it’s been wonderful! C’s working on increasing her stamina by taking up more of the chores that she used to do around the house and is improving daily. Soon, I hope to be able to take a little weekend trip somewhere for a big change of scenery.
