Immunosuppressants

The other day, a friend of mine asked me what immunosuppressants were. I realized that despite having an autoimmune disease, I had never explained or even mentioned (maybe just briefly) medications, immunosuppressants, and therapy.

So, immunosuppressants are medications that regulate our overactive immune system. An autoimmune disease occurs when your immune system goes haywire and instead of attacking foreign substances, it attacks healthy tissues.

In my rare autoimmune disease, my immune system started attacking the meninges, the pachymeninges, and since they were close by, even the auditory nerve, making me deaf.

How do you calm down an overactive immune system? With immunosuppressants. There are many types of them, some stronger, some milder, some taken orally, and some administered intravenously. Some work for specific conditions, while other times, the treatment approach needs to be evaluated as the clinical picture evolves (in my case, with a rare disease, they tried different medications to see if I responded well to some and not others).

Cortisone is always prescribed because it reduces inflammation caused by the immune system. However, it cannot be used for long periods, and the dosage must always be strictly monitored. (Cortisone doesn’t help with sleep, it made me weigh 75 kg, feel swollen, restless, moody, and much more). I didn’t have high doses.

The first immunosuppressant they gave me was cyclophosphamide, a strong chemotherapy drug. It was administered intravenously under close medical supervision. Infusions every 40 days. Side effects: nausea, hair loss, early menopause, infertility, non-existent immune system.

After completing the first two cycles (two cycles with three sessions each), they decided to switch to azathioprine in tablet form. An oral immunosuppressant. This also required close medical monitoring to determine the exact dosage. It takes some time to take effect, and during that month, I had a relapse. The disease flared up again, so I had another cyclophosphamide infusion, and then the doctors opted for rituximab.

Rituximab (which targets B cells) is also administered intravenously, two infusions per year with a six-month interval between them. Side effects: fatigue, cystitis, but much milder compared to cyclophosphamide. It’s uncertain how many years I’ll need it, but they told me it would be at least five. Now, since I still wasn’t doing well, after the first infusion, they reintroduced azathioprine as well. It has been almost a year since it was reintroduced, and they have decided to slowly reduce it now.

Well… here it is… this is my story.

Or at least the part about immunosuppressants.