I haven’t posted much lately, so here’s a quick update. I’ve been trialing Xolair, a medication that my allergist hoped would improve my quality of life. It did not have the specific effects that my allergist had hoped for, so she recommended I discontinue it. [*For my experience with Xolair, see the end of this post]
At the same time, and against my better judgement, my allergist wanted me to discontinue another medication. I try very hard to only change one variable at a time, so that I can try to isolate its effects and have a better idea of what is causing what. Which I reminded the allergist.
But sometimes it’s hard to effectively advocate for myself, because the trip to the VA hospital is so stressful on my body (3+ hour car ride each way, making sure I have access to bathrooms during the trip, my joints seize up during the ride making it hard to walk, flourescent lights in the hospital, hand sanitizer everywhere [I’m allergic], fragrances everywhere [ditto], stress from dealing with healthcare providers, stress from trying to avoid contact with the antiseptic I’m allergic to, trying to maintain my medication schedule and my eating schedule, etc.). When I have an allergic reaction, it affects my cognitive abilities. Imagine trying to have an intelligent discussion with your doctor during the worst fuzzy-headedness you’ve ever experienced during a cold… I just can’t think straight, and therefore I can’t process what the doctor is telling me and effectively evaluate their plan of action.
In this case, I *should have said* – “Let’s not change anything else while I’m coming off the Xolair. Let’s subtract that and evaluate the reaction for a few months.” But I was not successful in conveying how slowly we needed to proceed.
What happened instead was: I expressed some concerns, the doctor gave me one last Xolair injection, and told me to slowly start stepping down off my other medication (we agreed on one increment/week), and then not to return for my Xolair injection a month later.
So, against my better judgement (never mess with a stable patient), I started decreasing my medication. The first week I had a chronic migraine (for the entire week). So I returned to the full dose the following week. Once the migraine ended and I felt stable again, I reduced my dose by one increment the third week. I’m less clear on what happened after that, because I was slipping into brain fog and lethargy. At some point, I realized two weeks had gone by, because I was refilling my pill caddy again. The next two weeks went by even quicker. The entire month of September came and went, with nothing to show for it on my part.
Cognitive side effects from medications, illnesses, or injuries are insidious because they affect your ability to detect them and your ability to get help.
Crew Dog, onesickvet.com
Initially, I had thought my body was recovering from the trip to the VA, then from the migraine, then from the refinance efforts. But eventually (through the brain fog) I realized that it was probably a result of changing my meds. An additional month went by during which I was not only reducing one medication, but had also discontinued the Xolair, and I had limited cognitive ability and no energy. Like, stand up, accomplish one very small task, and need to sit down/lie down and rest.
Once I figured out what was underlying my symptoms, I contacted my allergist, who agreed to put me back on Xolair while I continue to step-down off the other medication. We’ll see how that goes.
MEANWHILE, in the media, *another* medication I’m on, Zantac (generic name, ranitidine), started getting a lot of attention. At first, it was reported that a few batches of generic Zantac had been found to be contaminated with a substance that is a known cancer-causing substance [NDMA; also see here]. After research into the situation, including reading this FDA statement, I decided to monitor developments but continue to take my prescribed ranitidine. Then Novartis/Sandoz announced that it would do a voluntary recall of its product. Then additional manufacturers announced voluntary recalls [see here for Apotex] and major pharmacies such as Walgreens, Walmart, and Rite Aid announced they would be removing ranitidine from their shelves. I contacted my allergist to determine the manufacturer of my ranitidine, but was unable to get an answer to that specific question. My allergist did, however, talk to the pharmacist at our VA hospital about the situation, and relay information from the pharmacist to me, which I appreciated. Although there has not been an FDA recall of ranitidine, we decided that I would switch to famotidine out of an abundance of caution (and because I have no way of determining the actual manufacturer of the ranitidine I receive from the VA). I am currently waiting for that prescription to be filled.
So, to recap: I tried a new drug. Its effects were subtle but beneficial. Since I had to drive 6-7 hours roundtrip every month to receive the injections, and the doctor did not perceive a dramatic enough improvement, we decided to discontinue the new medication. Overlapping with this change, we also changed another drug. My quality of life took a drastic hit. Now I’m trying to stabilize, but I need to change *a third* medication. Meanwhile, my quality of life has tanked and I’ve spent seven weeks in bed or on the couch.
I’ve lost two months of my life because my new allergist wanted to change my medications and see what happened. I’m tired of being a living medical experiment, although I guess it’s better than being a dead one.
Crew Dog, onesickvet.com
*My impressions of Xolair: It helped me breathe better and gave me (a lot) more energy, but I seemed to be *more* reactive to foods and smells. We had hoped I would be *less* reactive to foods and smells.
