My dermatologist and my GI agreed that because my adalim levels were low and I wasn't building a tolerance to the Humira we should try dosing at 80MG per week. That's two pens/syringes every seven days. I was worried about the increased dosage so I did a little of my own research and I spoke to a friend who is a scientist. There were no increased risks and my body was tolerating the drug well already. It seemed that a higher dosage resulted in an increased chance of remission for most people. So we did it. A whole 3 months at 80MG per week.
I experienced no unusual side effects. I try to hydrate on injection days and I seem to be hungrier than usual, but my intestines seem to tolerate fiber a little bit better so I tried healthier snacks and the occasional salad.
I don't know how much is the Humira and how much is the steroids but things seemed okay for quite a while. Then, a few weeks ago, I started having an HS flare.
Hidradenitis suppurativa is an unpredictable disease. The first few weeks on steroids and an increased Humira dose were okay, but then things spiraled out of control. On June 11 I had to go to Urgent Care because the pain and swelling was out of control. I had an active infection and I had to have three (3) spots lanced and drained. The infection was terrible. The next day, Monday, I went to the ER because nothing had improved. In fact the infection seemed to be worse, with redness and swelling spreading across my breast tissue.
The ER doctor ran TONS of blood work and confirmed that I was on the right antibiotics (doxycycline) but he gave me pain meds, different antibiotics to start if things didn't get better, and instructions to follow up with my dermatologist.
The next day I saw my dermatologist. She was shocked at how bad things had gotten. She cultured one spot and told me to come in on the following Friday for an excision, something I didn't want to do.
I kept with the steroids and the antibiotics, started using bactine spray twice a day, and continued my rotation of bleach baths and epsom salts soaks. It was bad. The pain was absolutely terrible. The ER called and said my blood cultures showed staph in my blood stream, which is terrible, but I was already on the right antibiotics, not so terrible. Then the culture came back, Positive for ANOTHER bacteria. So another antibiotic.
I followed up with my primary care doc, but the meds were all doing their jobs, so the infections were clearing, even if my skin looked like a battlefield. I went in to see my GI as well and he was concerned that the Humira might not be working and if it's not working my Crohn's may ALSO be flaring or causing damage, but the steroids would be covering the symptoms.
The GI has ordered more blood work and stool samples and all sorts of stuff. He wants me to see another dermatologist for a second opinion, but the one he wants me to see doesn't take my insurance.
Current medications/treatments: Humira 80MG per week, doxycycline, clavamox, prednisone 10MG per day, turmeric, hemp seed oil. Hibiclens wash, bactine spray, and bleach baths twice a week.
These pictures were taken before my ER visit and the week after. I don't want anyone to look unless they want to, but I've tried to document things for my own records. These aren't particularly graphic, but they provide a small glimpse into what I'm dealing with.
I take Humira for Crohn's disease, Hidradenitis Suppurativa, psoriasis, and polymylagia rheumatica.
I experienced no unusual side effects. I try to hydrate on injection days and I seem to be hungrier than usual, but my intestines seem to tolerate fiber a little bit better so I tried healthier snacks and the occasional salad.
I don't know how much is the Humira and how much is the steroids but things seemed okay for quite a while. Then, a few weeks ago, I started having an HS flare.
Hidradenitis suppurativa is an unpredictable disease. The first few weeks on steroids and an increased Humira dose were okay, but then things spiraled out of control. On June 11 I had to go to Urgent Care because the pain and swelling was out of control. I had an active infection and I had to have three (3) spots lanced and drained. The infection was terrible. The next day, Monday, I went to the ER because nothing had improved. In fact the infection seemed to be worse, with redness and swelling spreading across my breast tissue.
The ER doctor ran TONS of blood work and confirmed that I was on the right antibiotics (doxycycline) but he gave me pain meds, different antibiotics to start if things didn't get better, and instructions to follow up with my dermatologist.
The next day I saw my dermatologist. She was shocked at how bad things had gotten. She cultured one spot and told me to come in on the following Friday for an excision, something I didn't want to do.
I kept with the steroids and the antibiotics, started using bactine spray twice a day, and continued my rotation of bleach baths and epsom salts soaks. It was bad. The pain was absolutely terrible. The ER called and said my blood cultures showed staph in my blood stream, which is terrible, but I was already on the right antibiotics, not so terrible. Then the culture came back, Positive for ANOTHER bacteria. So another antibiotic.
I followed up with my primary care doc, but the meds were all doing their jobs, so the infections were clearing, even if my skin looked like a battlefield. I went in to see my GI as well and he was concerned that the Humira might not be working and if it's not working my Crohn's may ALSO be flaring or causing damage, but the steroids would be covering the symptoms.
The GI has ordered more blood work and stool samples and all sorts of stuff. He wants me to see another dermatologist for a second opinion, but the one he wants me to see doesn't take my insurance.
Current medications/treatments: Humira 80MG per week, doxycycline, clavamox, prednisone 10MG per day, turmeric, hemp seed oil. Hibiclens wash, bactine spray, and bleach baths twice a week.
These pictures were taken before my ER visit and the week after. I don't want anyone to look unless they want to, but I've tried to document things for my own records. These aren't particularly graphic, but they provide a small glimpse into what I'm dealing with.
I take Humira for Crohn's disease, Hidradenitis Suppurativa, psoriasis, and polymylagia rheumatica.
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