On Wednesday Kim had another appointment with her doctor for her RAD (Rheumatoid Autoimmune Disease. More commonly known as Rheumatoid Arthritis or RA, but we, the RAD community, are working to change the name in order to correctly identify it and to help raise awareness.) Anyway, Kim has been seeing her rheum doctor every month since she was diagnosed in October of last year. I want to update how she is doing, but I need to give some background information first.
This all started for us in late spring/early summer of last year. Kim started waking up in the mornings with this dry cough. It would last for an hour or less and than go away for the rest of the day. And that was it. Except it was every day and it didn’t go away. I remember telling her she should talk to her doctor, but she didn’t feel it was significant. Around that same time she began to wake up in the mornings and some of her fingers would be stiff and swollen. Some days were worse than others, but it was gardening season and it seemed if she did a lot in the garden one day than the next day her fingers would be swollen and stiff for the first little bit of the day. Again, she chalked it up as insignificant. As summer wore on the cough and the finger/hand pain didn’t go away and in late summer/early fall Kim began to experience shortness of breath (SOB, yes, that’s the real medical abbreviation though you can snicker every time I type it if you want.) At first she started noticing that it was hard to walk a single flight of stairs without breathing hard by the time she got to the top. Than she started noticing that there were times that she would be talking to people and would find herself in the middle of a sentence without enough breath to finish the sentence. Who can’t finish a normal sentence without having to take an extra breath in the middle of it? Meanwhile, her fingers were getting worse. She would wake in the mornings and not be able to move some of her fingers due to the pain, stiffness, and swelling. In the fall she started in with pain in her feet. Excruciating pain in the mornings to the point that she couldn’t walk on them. All of this was even with her being on several prescribed pain medications and some over the counter medications for pain. So that is what led to her seeing her general practitioner who ran some test and then referred us to a rheumatologist.
The rheumatologist ran more tests, confirmed the RAD diagnosis, and put her on some very aggressive drugs called disease-modifying antirheumatic drugs (DMARDS). He also put her on prednisone, a type of steroid, to help give her a “boost” to make her feel better until the DMARDS had enough time to (hopefully) start to work. By the end of December we began to notice that she was doing better. The swelling was down in her joints and her hands were no longer stiff when she would wake up. The foot pain was gone completely and her SOB was almost gone as well. Her daily pain medication usage was almost down to nothing as well. We felt that the DMARDS were starting to work. She has been seeing the rheumatologist monthly since her diagnosis and at the December appointment he wanted her to increase the dosage of one of her DMARDS while at the same time tapering off of the prednisone. Prednisone is a drug that you must taper off of slowly otherwise it can really mess up your body with some nasty side effects. She began to taper off by taking 5 mg less than she had taken the week prior. After the first two weeks of tapering we noticed that some of the symptoms were coming back just a little bit. We expected that since we knew that the steroids were probably masking or hiding some of the symptoms. When she got her dosage down to 5 mg a day her symptoms came back in full force. Joint pain and swelling, constant fatigue, fingers stiff and swollen in the mornings, and her SOB got really bad. She walks a flight of stairs and it takes her almost 5 minutes for her to be able to breath normally. Plus, she is back up to taking as many pain pills as she ever has on top of all of her other medications.
Throughout this whole time she has been having blood labs drawn every 2 weeks to monitor and watch for potentially bad side effects from the medications she is taking. At her December appointment the rheumatologist was concerned about some of her blood counts and asked for some further testing. She also scheduled a pulmonary function test (PFT) to see if there was any evidence of breathing trouble that would explain the SOB. The rheumatologist called a little over a week ago and told her to stop taking one of the drugs he had put her on to help control inflammation. Turns out the furthering testing that he ordered showed that the drug was causing some slight internal bleeding. (No matter how I try and describe internal bleeding it always sounds bad. And it is.) She also took her PFT and failed. Test results state that she has an “obstructive lung disease” which at this point means there is something wrong, but they don’t know what. Kim had chest x-rays and a CT and both are clear.
So all of that to lead up to her appointment on Wednesday. We went in with a full sheet of questions and her doctor answered them all. Some of them we may not agree with, but at this point in time we need to wait and see what happens. He believes that all of her symptoms coming back were because he had her taper off of the prednisone too quickly. He had her bump back up to 15 mg a day and then wants her to taper off at the rate of 2.5 mg per week. This explanation seems a little bit off to us. He said that tapering too quickly would cause joint pain in a normal healthy person so he is quite convinced tapering slower will get her off of the steroids completely without any extra issues. We will have to see how that one goes. Her lab results look really good otherwise and it seems as if the DMARDS are helping to attack the disease. Her SED rate, which indicates the level of inflammation activity in ones body, was at a 1, which is great. However, while we were happy to see that number so low, we were scratching our heads since her joint swelling, stiffness, and pain has increased since her last labs while the SED rate number went down. Lastly, he talked with us about her SOB which has gotten much worse. He is referring her to a pulmonologist to get an expert opinion on her lungs. He is quite convinced that her breathing issues are not connected to her RAD at all. He thinks she simply has asthma. This issue is probably the one we are most skeptical about seeing as her joint pain and breathing issues started at almost exactly the same time last summer and continue to coincide with each other. As one gets better so does the other, and when one gets worse they both do. Needless to say we think he may be missing this one completely, but that is why she is going to a specialist. (And yes, there are significant and potentially serious links between RAD and lung disease.) Even the rheumatologist admitted that while he thinks it is just asthma, he recognizes that it would be an amazing coincidence for her to contract both at almost exactly the same time.
So that is the update on Kim’s health. We continue to covet your prayers and appreciate your support.
The LORD is my rock and my fortress and my deliverer,
my God, my rock, in whom I take refuge,
my shield, and the horn of my salvation, my stronghold.
(Psalm 18:2 ESV)