Living Life

MP900070786Missing life or living life… that’s where we are at in this household. When do we medicate, and when don’t we medicate.

Between myself, and my lupus control, and Bubba’s PFAPA it’s a constant battle to determine when and how much medication we take. I have been trying to determine the right amounts, times per day and types of medication I need to control my lupus without overdoing the medications and getting unwanted side effects.

NSAIDs and the Stomach

Unfortunately, my on-and-off long term use of NSAIDs has taken a toll on my stomach. I have taken Nabumetone and Plaquenil on and off for the last 12 years. I have never taken them consistently for longer than 4 years consecutively. But it hasn’t mattered. Last August I started developing signs that I had stomach damage from their use. For most of the 12 years I took omeprazole in combination with those drugs to protect my stomach from their harmful effects, but it wasn’t enough to keep the stomach pain away.

I exhibited signs and symptoms of an ulcer from the medication. I was examined, and had testing by a GI doctor through the winter and spring. Luckily, I didn’t have an ulcer or infection in my stomach, but the pain was still present from the medications none-the-less. Unfortunately, the pain became so severe that it was waking me in the night, and I was in a cold sweat from it. I stopped taking all my lupus medications to stop the pain, but within a few months, my lupus symptoms were back with such intensity I had to find a way to take the meds.

Ulcers and stomach pain are complications of taking NSAID medications, as well as Plaquenil. Especially for long term and chronic users.

Treatment for the Stomach Pain

In the end, I was treated as if I had an ulcer with some different stomach medications and combinations and experimented with my medications in a rotation to find the culprit, or combination of culprits to my stomach pain. What I found out, I need a complex rotation of medication timing to get it right to balance it all out!

Lowering the dosages and getting off medication

I am not going to be able to get off of my medications for a bit longer, unfortunately. But I have found the lowest dosage possible to maintain a healthy status for myself, with the stomach and lupus medications. The correct dosage, with time of day for the omeprazole, timed with a rotation of the Nabumetone and Plaquenil has worked out for now. The goal is to get off of all of it – someday!

Bubba and PFAPA

We had a wonderful break in Bubba’s cyclical fevers, but they returned (as expected), at the same frequency as before. We have continued with our follow ups and his status remains the same. He is still experiencing high fevers (above 101) for 3-5 days in length, every 20-30 days. He is still struggling with mouth sores, joint pain, headaches and occasional stomach upset from the episodes as well. All these things are part of his PFAPA condition. As a baby, we thought it was difficult to interpret what was happening, but with an emotional toddler we have entered a whole new realm of difficulties. Frustration and pain are magnified with his wonderful 2-year-old personality. Bubba is a very active child, and to be debilitated for 5 days with joint pain, high fever, and pain is frustrating and exhausting for him.

We used to have endless crying before (in his infancy), and although we still have many tears over the 5 days (ours and Bubba’s), the screaming in pain, muscle spasms and jerks, and falling to the floor with joint pain has been emotionally challenging for all. When frustration is high for Bubba he has trouble using his words clearly, making it a much more frustrating process.

Pill Bottles Containing MedicationPrednisol

We have been using the prednisol (toddler prednisone) as we think we can. It definitely shortens the length between his episodes directly following, unfortunately. We have used it to keep him participating in things he loves. This time of year that is car shows, and family functions. He would miss so many life functions and events without it. We only use it for that reason, or if he has had an illness directly before having his PFAPA episode.

PFAPA and potty training

We have started the “introduction” to potty training as  I have been thinking of it, and calling it. We are getting him used to using the potty with frequency, and he has caught on to using it, but it still not really able to identify the need to go yet. We were making leaps and bounds when we began this introduction process, but the first fever during that month set him back to starting over. We will continue to plug along in this process, however, I feel it is going to be much more challenging than I had initially anticipated.

Because Bubba is unable to get up much during the first 2 days of the episode it is hard to keep the motivation to use the potty high. And in all honesty – other than asking him if he would like to use it, I don’t push much… I don’t blame him one bit for not wanting to try something he isn’t overly motivated to do in the first place.

In the end, we do what we need to do to keep on living and make it the best day/time possible!