I am going to wrap up this sick series with this post because reliving that time in my life has been hard in so many ways – much harder than I anticipated when I decided to put it in words – and has resurrected some really negative feelings.
It felt like months passed between arriving at my parents’ house and seeing a dermatologist. But, in reality, it was less than one week. Once confirming that I did have bullous pemphigoid, the dermatologist in Jacksonville sent several prescriptions to our local pharmacy so I could begin treatment right away while awaiting the appointment with the local dermatologist. Unfortunately, bullous pemphigoid is so uncommon that there is no definite “THIS is what works” treatment plan. Treatment, at least in my case, consisted of several trial-and-error attempts before seeing results. A few weeks (and several nausea-inducing, ineffective, expensive meds later), the second dermatologist got results. With a combination of very strong steroids (along with secondary medicines to counter the damage that months of steroids were doing to my body) and immunosuppressants, new blisters finally stopped forming and the existing blisters stopped growing and, eventually, ruptured on their own or were punctured and drained by my husband. As that happened, things slowly became a little less dark because I could finally see an end.
After what felt like a year (but was actually about two months), my skin was finally itch-free and, basically, clear again. “Basically” because I still have (and probably always will have) lingering scars to remind me of that period of my life. I did have a few (two, I think?) rogue blisters surface in the weeks following the clearing. Each one threw me into a pretty severe emotional spiral but, luckily, cleared up with no major problems.
Two times in December of 2019, I travelled a few hours to a cancer treatment center to receive infusions of Rituxan – an antibody drug used to attack cancer cells. While bullous pemphigoid is an autoimmune disease, not cancer, there has been some success with Rituxan for the long-term treatment of bullous pemphigoid. Agreeing to the infusion was difficult and took weeks of mental back-and-forth. Rituxan has the potential for major, potentially life-threatening, side effects. It is actually strongly advised that, prior to the infusion, the patient be given a steroid to counter the likelihood of an allergic reaction to the medication. For the first infusion, my dermatologist (never having assigned this medication for a patient) declined the administration of steroid (because of the long period of time I was on it previously). As a result, I had a pretty scary (face swelling, throat closing) allergic reaction about 3 hours into the infusion. Luckily, it was caught quickly enough to not escalate to a serious problem. The infusion was paused, steroid was given, and the infusion was re-started with no additional issues.
Due to the seriousness of potential complications, I am undecided on whether or not I will continue the infusions at this time. Following the two I had in December, I am supposed to get another this December (2020) and then every six months for the rest of my life. From my understanding (founded in lots of obsessive reading and discussions with doctors), once you have bullous pemphigoid, it never goes away. The blisters are gone, but the possibility of another flare-up is always there – lying dormant. At any point, my body could, once again, decide that my skin is a foreign object and viciously attack it. But, on the other hand, it is possible that I will never have another outbreak (even without treatment). For that reason, I am leaning toward not following the Rituxan schedule that has been suggested to me. I am now on several anxiety medications (and have been for almost a year) which have allowed me to have a much more relaxed mindset. I now know the (albeit rare) horrible effects that prolonged severe anxiety can have and, as a result, I am way more responsive when I feel myself getting anxious. I now practice calming techniques as needed and, if anything starts to feel like “too much”, I contact my doctor immediately to discuss tweaking of medications.
If the events of the summer of 2019 do begin to repeat, I now have a much better understanding of what it is and how to counter it before it reaches the point it did over a year ago. And, if it happens, that recurrence will likely lead me to re-evaluate my Rituxan decision and commit to lifelong infusions. In the meantime, I am focusing on being my calmest, best self.