As an RAD Lovegiver, the most frustrating thing is watching the woman I love be in so much pain and not being able to do a damned thing about it. On top of that, the medical professionals seem to be guessing at what drug combinations to use to alleviate that pain. I guess that is why they call it practicing medicine. This past week or two has truly sucked. As an outsider, it appears to me that the drug combination Tanya is currently on is doing very little to benefit her. I have been looking through old photos of trips Tanya and I have taken over the years and I long to have her back in remission, but my hopes are definitely waning.
Back in July, Tanya’s first LA rheumatologist (Dr. Forouzesh) put her on a new drug, Cimzia, because the Enbrel did not seem to be working. Dr. Forouzesh was pretty much gushing with praise on how well this drug worked. Just use it for a few months and feel better was the impression I was left with. As Tanya is prone to do, she investigated the drug and it appeared that many were having a lot of luck with it. We put our thoughts of stem cell therapy aside and placed our hopes on Cimzia. As it turned out, Dr. Forouzesh lost his free samples of Cimzia and with the loss of the free drugs, his enthusiasm seemed to dissipate. After a couple of weeks he decided it was not going to work; even though Tanya’s research suggested it might take a few months. We decided to find a new rheumatologist.
A couple weeks later we found ourselves at Cedars-Sinai Medical Center with Dr. Ishimori. In the course of the physical examination, Dr. Ishimori mentioned that Cimzia would not have been her first choice; but it seemed to be doing exactly what it should be doing. One might think, “Well, that is great” except for one thing. Dr. Ishimori was basing this opinion on her observation of Tanya’s various joints; since this was the first time she ever saw Tanya she had nothing to base this opinion on. Cimzia is supposed to reduce swelling and inflammation of the joints. As Tanya’s joints were not visibly swollen and did not appear to cause pain when touched, Dr. Ishimori assumed that it was working. The problem is no one ever said there was any joint swelling to begin with.
During one of our visits to Dr. Ishimori she had some concern with the amount of Flexeril Tanya was taking, so she put her on a new muscle relaxer, Zanaflex. This is when things started getting really bad. Tanya was in extreme pain and could not sleep. I was told that I was needed more as an RAD Caregiver than a lovegiver. I had to start getting more involved in remembering what medications she was using, what worked, what didn’t and I needed to start remembering any comment made to me about the pain; even if I was told six months ago. Quite the challenge for someone that hasn’t had to take care of anyone other than his dog for the last 20 years. I m trying.
Anyway, the Zanaflex did not seem to be working so Dr. Ishimori prescribed Amrix ER, which is basically a higher dose of Flexeril, with extended release properties. We have been experimenting with it; trying to find the right combination of dosage with time of day to ensure decent sleep for Tanya without her being drugged up all day long. We are using a combination of Amrix and Flexeril to get her to sleep. I am not sure how Dr. Ishimori will feel about it, but it is something we have to do.
I write these articles to help others that are living/loving someone with Rheumatoid Autoimmune Disease (RAD) in hopes that my experiences will help them to see that they are not alone. I also use the time to help me remember the names of the drugs (I could not tell you the names of doctors I have visited much less the drugs they prescribed) and it gives me ideas as a caregiver. For example: I know that when Tanya first started taking Cimzia it seemed to help, at least, Tanya could always tell when her next shot was coming up due to her discomfort. She takes two shots of Cimzia once a month; I can not help but wonder if one shot twice a month would not be better for her. I will have to ask the good doctor about that the next time we go in.