Sulfasalazine allergy

On Thanksgiving weekend, I started Sulfasalazine (aka Azulfidine, Salazopyrin, Sulazine, & probably others.) My rheumatologist had said it is the first on the list to try for my Psoriatic Arthritis (PsA). Family members who had been prescribed the medication for ulcerative colitis did not have good things to say about it, but I also knew people who had been on it for decades and swore by it. I was hesitant to go on a med at all, but since the rheumatologist was starting to talk about joint damage, I was convinced that it was the next step. 

I started by taking 1/4th of my recommended daily dose, with the plan to increase over the coming weeks. The pills were huge, hard to swallow, and smelled pretty nasty. Unfortunately, things just got worse.  

I think it was the itchiness that hit me first. Within the first two days I was already itchy as hell. It was a weird itch, it was all over my body and unrelenting. I would find myself scratching almost unconsciously while watching tv or lying in bed. “Itchiness” is listed as a side effect, so I just noted it and went with it. 

I started noticing raised, bright red welts would pop up within about 10 minutes of scratching any itch. The marks would last for at least an hour, sometimes all day. I would also get these marks when I picked at zits on my face, when my dog scratched me, and even when clothes or jewellery rubbed on my skin. It was always worse at night or early in the morning. I have since learned this is called dermatographia, or aptly, skin writing.

Then it became apparent that I wasn’t thinking about food anymore. And when I did think about food, I became nauseated pretty quickly. It only got weirder. I didn’t want to eat anything, even the smell of non-food items would make me feel like vomiting. Has the smell of your shampoo ever made you retch in the morning? Yeah. My relationship with food is already complicated and this definitely wasn’t helping. 

I was tired as hell. More than my “normal” fatigue, which is generally pretty bad. It was like someone just flicked a switch and I was now on super power-saving mode. Basic life maintenance took all my energy. I would wake up in the morning and feel worse than when I went to bed. 

As I took the medication each night, I noticed my mouth getting progressively more itchy. It started with my lips, then my gums, palate, tongue, and throat. I would usually start to cough around the one hour mark, and this would bug me for the next 6 hours or so until I fell asleep. This eventually progressed to all these places becoming itchy AND swollen, which made the coughing worse. On the last day I took the medication, I called Telehealth Ontario. They told me I was likely having an allergic reaction, to stop the meds right away, take antihistamines, and go to the hospital if it got worse.  

So, I stopped it. I took Sulfasalazine for less than a week. I didn’t get anywhere near the full dosage. If I had started with the full dosage, I imagine it could have been much worse.  

I have since talked to my family and discovered that several relatives have sulfa allergies. Would have been good to know this beforehand, but live and learn. I will be getting in the habit of discussing new meds with my family. 

And the aftermath? Well, it took about 2 weeks for the constant itchiness to decrease. I continue to take antihistamines every day. I still get bouts of extreme itchiness out of nowhere, but it is not 24/7 like it was. My skin still reacts with itchy dermatographia to almost anything. I got some energy back around Christmas. The lack of energy was one of the reasons I ghosted this site for a few months. My appetite is still messed up, but has improved a bit since Christmas. I get thirsty and drink lots of water, but I could still go most of the day without eating if nothing prompted me. I get full very fast. I am trying to approach this intuitively, rather than turn it into further disordered eating. 

My rheumatologist and I are looking at other treatments for my PsA. Weirdly, my PsA hasn’t been as bad over the past few months. I still have days where I have a lot of pain and can’t do much, but not as often. I was referred to a new dermatologist and allergist. I haven’t seen the dermatologist yet, but the allergist confirmed the sulfa allergy and diagnosed me with dermatographic urticaria. I guess having a name for it helps, but the only treatment is prescription antihistamines and avoiding stuff that triggers it. The new antihistamines are covered by my insurance, so I guess that is something to be grateful for, as I was really burning through the weak over-the-counter stuff. The allergist said it could last for a year or more – “more” being the rest of my life. I’m hoping it will go away, as some of the other symptoms have gone away, but I guess we’ll see. It is a pain in the ass, but manageable. Thankfully, it looks much worse than it is. I have had bad experiences with medication in the past, but this one continues to suck. 

I bought myself a custom medic alert bracelet from Etsy to be a responsible body owner. If I’m ever in an accident or otherwise incapacitated and require medical attention, please do me a solid and tell the medical professionals that I have a sulfa allergy. 

As always, my experiences are my own. I am not suggesting this drug is right or wrong for you, please talk to a qualified medical expert.