A Young Wife’s Tale

Oh, how far we’ve come in our journey with Psoriatic Arthritis. Remember the awful rheumatologist in New Jersey who wanted to take David off the Humira? He didn’t believe David had psoriatic arthritis. David had a great visit with his old Dallas rheumatologist last week. David and I told the doctor how well David has [...]

The week of September 12-18, National Chronic Invisible Illness Awareness Week, David started getting red welts or hives on his torso. Just a few at first, and I initially thought it was the psoriasis. I immediately went into panic mode, assuming the Humira had stopped working on his Psoriatic Arthritis, and that he was going to start having the terrible flares that leave him bedridden again. David quickly figured out it wasn’t psoriasis. He took Benadryl, and the hives went away.

The next day they came back, only worse. He saw our family doctor who gave him some allergy medicine. I make our laundry detergent and cleaning products, and nothing new had been introduced. David wasn’t using any new shampoos or soap.

This went on for days. Allergy medicine would clear up his skin, but the welts kept coming back. Then one afternoon while I was at my part-time administrative assistant job, David started having trouble breathing. The allergic reaction was making his throat close up.

Even though David’s psoriatic arthritis is in remission, we don’t know how long it will last. We are really enjoying a more “normal” life right now, but I still struggle with fear and anxiety.

The last time David saw the awful New Jersey rheumatologist, he would only write a script for a 90 day supply of Humira instead of the typical 12 month supply doctors usually send to the Humira Patient Assistance Program. When I called to order another shipment (they send one 90 day supply at a time), they reminded me he’d need another script.

I told them the name of David’s new rheumy, and they said they didn’t have her info in their system. No big deal. They said they’d contact her and fax her portion of the paperwork.

But, I felt nervous. What if they didn’t have her info because she refused to work with Humira or something? Sounds silly, I know. After my experiences with David’s first rheumatologist and COBRA though, it’s not that farfetched.

Yesterday, I blogged about David’s appointment with his new rheumatologist. As the nurse was asking David what medications he was taking, David mentioned that he has been taking less than one pain pill a week. I knew he was taking less, but I didn’t realize how much less. The only other medication he’s been taking is Humira.

Since December, David has been off of most of his medication. He has been in better moods, he has only flared when he’s done too much, and even then, they were mild flares.

Throughout his appointment, David talked. He answered ninety percent of the questions asked. At past appointments, I’ve done at least fifty percent of the talking. He volunteered information he thought the doctor might like to know. It was pretty amazing

This rheumatologist did not talk over him. She asked many questions regarding David’s psoriasis, which was nice, since most rheumatologists focus on the arthritis part of psoriatic arthritis, especially since David never complains about his psoriasis. She listened to our answers and repeated back to us what she was hearing. At one point, during family medical history, she asked us to clarify if a relative had irritable or inflammatory bowel syndrome. She didn’t freak out the way other rheumatologists have when he mentioned having taken medications such as Wellbutrin and Celexa.

Towards the end of the appointment, she told David she wants him to get back to exercising. She emphasized that David do an exercise he enjoys. If you enjoy your exercise routine, you’re much more likely to stick with it. She seemed full of common sense.