Brief update on how Kim is doing since her last appointment and our last update. At her last visit with her rheumatologist, she wasn’t doing very well. She had been tapering off of her steroids, but as she tapered most of her symptoms had come back. The doctor boosted her prednisone dosage back up to her maximum level and had her taper down more slowly. Also, he stated that he believed her shortness of breath (SOB), otherwise known as dyspnea, was actually asthma and not related to her RAD. We were and are skeptical about it just being asthma and we made an appointment with a pulmonologist to further investigate her breathing issues. So that’s the brief back story.
Kim has been tapering off of her steroids at the rate of 2.5 mg per week since her last appointment and this time, she’s is doing great. She’s down to 2.5 mg per day now and on Friday of this week will be off of the prednisone. (Funny comment — her rheumatologist contacted her last week and said, “Great job on getting off the prednisone!” Ummmm? Yeah. Like she just willed herself to do it. Must have been that she wasn’t trying hard enough last time. Maybe this time she just worked harder and had a more positive attitude and that’s why it worked. I’m getting really sarcastic and snarky, but I get like that when comments are made by doctor’s that don’t make any sense. OK, back to the update.) As she has tapered off this time she has done very well. Most of her symptoms have stayed away, pain and swelling are more controlled, and she hasn’t gone back into an immediate flare. It would appear that the MTX and the plaquinal are working. While she still struggles with pain and fatigue daily, neither are as bad as they have been. All of this is great news.
With that said there are still some concerns. Her last labs showed that she has a significant iron shortage and is anemic. So she is adding an iron supplement to help counteract that. Why is she anemic? Not sure. Anemia does have a high rate of occurrence in people diagnosed with RAD, but it can also be a side effect of MTX and plaquinal. Also, when she got under the 7.5 mg per day of the prednisone she began developing mouth ulcers. Two days after she had dropped to 5 mg a day she woke up with a dime sized ulcer on the tip of her tongue. From there she’s had more on her tongue, inside her lips, and her cheeks. This too is a possible side effect of the MTX and the doctor has increased her folic acid to help with that. However, the medications may not be the reason why she’s developed the mouth ulcers. Back in October of 2011, at her first visit to the rheumatologist, she had ulcers in her nasal passage and some in her mouth. This was prior to her RAD diagnosis and prior to her starting on any of the medications she’s been on for treatment. The ulcers were one of the symptoms that didn’t line up with RAD and actually made us wonder if she had lupus. (RAD and lupus are both autoimmune diseases with symptoms that often overlap.) At our initial visits with her rheumatologist the mouth/nasal ulcers were one of the things he couldn’t explain. I asked him specifically at her visit when she was officially diagnosed with RAD if it was possible that she had lupus and if it was possible to have both. His reply was that, “Yes, it is possible to have both. At this time there isn’t enough evidence to diagnose lupus, but it may just be in the early stages and may be a diagnosis at some later date.” So, it is possible that the ulcers she has are actually a symptom of something else and that the prednisone was simply masking those symptoms. Hard to say at this point in time.
Lastly, her breathing has improved as she has tapered this time. This only reaffirms to us that her breathing problems are not asthma, but rather related to her RAD. The first time she tapered off the steroids her symptoms were bad and the shortness of breath was as well. This time her symptoms are much better and her breathing issues are too. Hard to convince Kim and I that the two aren’t related. She goes in to see the pulmonologist on Wednesday and we would appreciate your prayers for wisdom for us and the doctor at the visit. While her breathing is better, it’s not 100%. Also, she has developed a “crackle” when she breaths. At the end of every breath she takes you can hear a sound like Rice Krispies crackling coming from her throat area. Hopefully we can get some answers on Wednesday.
So that is the update on Kim’s health. She isn’t where she was nine months ago and likely never will be, but she’s better than where she has been. As I stated above, she still has pain daily and continues to struggle with fatigue, but overall she is much better than she was even just three weeks ago. We thank God for what He has done. At the same time, and this is me being completely honest, we recognize that it could all be different again by tomorrow. It is still hard to not worry about her health even when she is doing well. At least that is my struggle. Fortunately I am reminded that God has every one of our days planned for us and He knows what the future holds. Regardless of what happens tomorrow or next year, His grace will be sufficient and we can trust Him in His goodness.