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Side Effects

I've been diagnosed with psoriasis about two years ago. Around the age of 25, I noticed an uncontrollable itch in the lower back, the buttocks and the gluteal fold, especially after exercise or prolonged periods of sitting. It went away after some time, and I assumed it's just some random skin irritation. Around my 26th birthday, I noticed I have some bald spots in my beard, around the chin. My wife's aunt, a well-regarded naturopathy practitioner with clients all over the country, said it looks like alopecia areata and must be related to stress. She gave me some custom-made homeopathic potion, which didn't work, and I decided to finally go to a skin doctor, to solve both problems.

The skin doctor, a woman, asked me to undress so she can see if I have well-scratched skin in other places, too. I was so frustrated with my condition (which became much worse until the appointment), and didn't hesitate much. She said it looks like a fungal infection caused by sweating and bad hygeine, although I told her I must take a shower after exercise or before bed and another one when I wake up, to keep things under control. After I left her clinic, I felt humiliated, violated and unheard. I knew the antifungal treatment won't work, and I lost even more of my self confidence.

Several months later, I went back to the same doctor, to avoid the shame of undressing in front of another doctor. She said, far too casually, something like "whoops, so it's not fungal infection after all", and gave me some "topical corticosteroids" cream. The itching was much worse at this point, especially at night, but this cream added a burning or stinging sensation, without any improvement. I decided to go to another skin doctor, someone who also works in a hospital, although I had to wait for months.

The other doctor, a man, asked if I have family history of skin disease, then concluded, "this looks like atopic dermatitis". He prescribed me some other cream, and I tried it for a month. I felt that burning sensation and my disturbed sleep problem was much, much worse, but after several weeks things got better. The dark patches of well-scratched skin became lighter, and the bald spots in my beard started shrinking. When the doctor saw the improvement in my condition, he instructed me to keep using this cream for several months, although the internet says it's dangerous to use this cream for over a month.

Shortly after this second appointment, things got really bad. The cream stopped working, and this summer was a nightmare. A second patch of "atopic dermatitis" appeared in the pubis, right below the belt, and it spread downwards quickly, towards the leg. When the doctor saw this, he said it can't be atopic dermatitis, and must be psoriasis. He sent me to a public hospital: without an official stamp of approval, he can't give me any psoriasis treatment.

It took many months until I finally had the opportunity to undress in front of a third doctor, this time in the hospital. That doctor confirmed the suspicions and sent me to a biopsy, which wasn't very fun. They took two samples of my skin, about the size of a watch battery, from the buttocks and the pubis. I couldn't sleep, sit or walk, and it was a slightly worse nightmare for about two weeks.

It took about a month for the results to arrive, if I remember correctly, and both samples looked like classic cases of psoriasis. When I finally met the doctor with the results, I was prescribed even more creams, because I fell into the "5% or less of coverage" category, or in other words, a "mild case". They didn't work, and I came back again after several months: this time, the doctor, a very nice woman, was very empathic, and that made it much easier to undress in front of her. She gave me some other kind of cream, which helped reduce the burning sensation, and the two creams worked pretty well together, for some time. When I returned to the hospital once more, the doctor said he understands I'm officially a "mild case", but with patches in sensitive places and severe impact on quality-of-life. He said we'll get me ready for systemic therapy, try one kind, then proceed to another one if needed.

I have family history of hypertriglyceridemia and my cholesterol levels are high, although I'm vegan and active. My blood tests were not good, and the best treament option had the side effect of increasing blood fat levels. The alternative is a chemotherapy agent (!) that's used to treat cancer, with severe side effects. Phototherapy, the only alternative to medication, is not an option because it doesn't work in skin folds. I was out of options, and the public health system offers expensive, top-of-the-line biologic medication only after failure of two other kinds of therapy. I needed that second treatment failure to become a candidate for safe and effective treatment.

I decided to shuffle the cards again, and went to another skin doctor, who also works in some other hospital. I chose this doctor because he's young (possibly, less dogmatic), and also a venerologist or a sexologist (not sure which one). He said my suffering, which includes years of bad sleep and obvious impact on the sex life of a young person (who's getting married soon), is 100% unacceptable. Also, he said the systemic medications the other doctors wanted to give me are dangerous (considering my blood test results) and a bad fit, especially for a young, generally health and productive person. He gave me some cream, as a short-term solution, and proposed that we try to send a special request for Otezla. He said it's a relatively new treatment option, normally given to patients with psoriatic arthritis, with a very good safety profile (the safest option in his arsenal, even in the long term), tolerable side effects that go away quickly, and a reasonable (not great) success rate. We agreed to give this a try, and if the request is denied or the medication doesn't work, try something else. It's safe, anyway, and it should be safe to demonstrate failure of the other, "dangerous" treatment options, if we try them only for 2-3 months and do frequent blood tests. With this new ally, I felt motivated to find a working solution, even it takes even more time.

This doctor is great, and his recommendation letter worked. Although I was desperate, I decided to wait for another month, so I don't have any side effects during my wedding in early September. I started taking those pills right after the wedding: a honeymoon wasn't an option due to the travel restrictions and my employer at the time gives extra vacation days to newly wed employees, so this time window was perfect. The 3 months with Otezla are not easy:

diarrhea, nausea, upper respiratory tract infection, tension headache, and headache. These are not all the possible side effects [...]

https://www.otezla.com/safety-and-side-effects

I had bad headaches, lost my appetite, had to start my work day late and had to leave work in time, so I can take the second pill at home. I definitely lost some weight, probably around 10%, and that's a lot for a short and fit person like me. After 4 months or so, most side effects went away completely, and I learned how to handle the rest with very little impact on my quality of life. For example, today I know I'll be OK if I take the pill, then eat oats with soy milk: that's what I did yesterday, before I went to a rehearsal, and my stomach didn't interfere with my trumpet playing. I'm still struggling with exercise, but I'm sure I'll eventually figure this out. Learning how to live with chronic disease and side effects is a process, and people who know me well know I'm a learner: it's in my blood, in high concentrations.

The second psoriasis patch disappeared almost completely after few months, and I could finally sleep at night! It was winter, and I was optimistic, because many psorasis patients suffer from increased itching when the skin is dry or cracked.

This is my first summer with effective medication: so far, I'm still holding up. I've had some itching for about two weeks, and my sleep was really bad this week (this is why I haven't posted anything in my gemlog). The itching goes away if I take a quick shower before bed, and that's good. It's the sleep problem that bothers me: my eyes hurt and I can't focus. I decided to try a melatonin supplement during the weekend.

The most important thing is knowing that you have options. If I fail to stabilize my sleep during the weekend, I can talk to a doctor, any doctor. If Otezla starts failing on me, now I have the two "required" treatment failures in my medical records, so I might be able to receive some other top-of-the-line medication without going through a long and humiliating process. In addition, during my time with Otezla, I stabilized my blood test results and now they look great, thanks to algae-based omega 3: this expands the range of treatment options. I'm not 100% optimistic, but I'm 30 already, much wiser, and a much better learner: I know I don't know much and I'm only human, but I know I'll find a way.