Laddie: Please welcome guest-blogger Rick Phillips who has written a 3-part series about Diabetes and Rheumatoid Arthritis. To learn more about Rick, please check out my recent post that introduces him to the readers of Test Guess and Go.
Rick Phillips: My Personal Journey with RA
Thank you once again to Laddie for me inviting me to blog at her site and especially for encouraging me to blog about arthritis. While I traditionally blog at TuDiabetes and have been a type 1 diabetic for 40+ years now, I also have Rheumatoid Arthritis (RA). The connection between the two diseases is always fascinating to me.
I decided to stretch Laddie’s invitation to a three-part blog about RA. In the first blog, I told of how I was diagnosed; today, I write of my personal path with RA; and the third blog will be a discussion of how RA and diabetes are related. While sequentially written, each one stands apart and can be read independent of the others. I hope you find meaning in my experience. If you wish, I am available to answer questions. I am not an expert, but I have had an interesting life with the two diseases.
The advancement of drugs in the treatment of Rheumatoid Arthritis (RA) is nothing less than amazing. In an informative article about Rheumatoid Arthritis at medicinenet.com, RA is defined as:
“An autoimmune disease that causes chronic inflammation of the joints. Autoimmune arthritis diseases are illnesses that occur when the body’s tissues are mistakenly attacked by their own immune system.”
The first line of drug defense is methotrexate. It is inexpensive, readily available, and a proven agent; although, with some downsides. One downside is that it does not always work. In fact, in most cases today, doctors want to move patients with RA to the more aggressive biologic drugs. You know these by the brand names: Enbrel, Remicade, Humira, and the secondary drug Orencia. Each is administered via injection or infusion. I prefer infusion, but most people prefer the injectable varieties. These drugs, along with a host of others, target proteins linked to the TNF alpha gene (tumor necrosis factor alpha). This gene belongs to a superfamily of genes defined as “a protein currently consisting of 19 ligands and 29 receptors in humans” (“TNF Superfamily,” 2014). This superfamily is thought to be involved in many types of diseases, including cancer (“TNF Superfamily,” 2014). In fact, the class of drugs used to treat RA mostly came out of cancer research. To read more about the TNF Superfamily, click here.
The doctor told me on the very first day that if I wished to continue to function, I must go to a biologic drug as soon as humanly possible. That meant using methotrexate or a similar drug (Arava) alone for six months, then testing and going to a biologic immediately. Those first six months were pretty tough. My disease continued to worsen, and by the end of it I was barely walking. So, my first “big gun drug” (as my doctor called it) was Remicade. I used this for almost 5 years and it was amazing. It absolutely stopped the progression of RA in its tracks. That is, until it didn’t. Over time, the frequency of doses began to get closer, and then it simply stopped working. When it did, I moved on to a succession of five biologic drugs; four of which did not work, or worked only slightly, until they stopped altogether.
This is not uncommon for RA patients. In fact, if you talk to RA patients who have had the disease for some time, many have been on every “big gun drug” out there. I have been on many, but not all.
After 12 years of using TNF inhibitors, I had a scary incident where I developed something termed ”lupus-like syndrome” which caused me to be hospitalized. Per the medical understanding at that time, I was forced to give up use of TNF inhibitors. For those of you who would like the disease function explained, there is a nice technical paper here. (Although I would skip it, if I were you.)
With the development of the lupus-like syndrome, I was forced to go on a different, potentially toxic, form of treatment using the drug Rituxan. At the time, it was my last stop on the available drug merry-go-round. The problem with Rituxan in particular is that during the clinical trials, people died. So, the first time one takes it is very scary. Doctors cannot predict who may be affected or when, but death is rare so it is unlikely the lights will simply go out. With my experience with other drug side effects, it was a troubling decision to use the drug. I put off the decision for about four months before I agreed. During that time, my condition worsened and I was barely moving; sometimes during this time frame I returned to using a cane for walking. I was once again a mess.
Today, my disease is managed with infusions every four months. With constant appointments with the rheumatologist and a variety of secondary drugs, I am able to semi-manage RA. I say semi-manage because I have had to stop working, I have periodic flares, and of course stamina is a big concern. The truth is that no one really manages aggressive RA. Instead, it is a series of highs and lows. Some days you feel well, other days you feel terrible. But with the assistance of biologic drugs, it is possible to live, albeit some days on a tight rope. I have had no serious side effects using Rituxan, and while I am on the maximum allowable dose, the doctor and I are thinking we might have a chance to stretch the infusion intervals a bit in the future. The drug is intended to be used on a six month cycle, with four months being the shortest cycle. I am on a four month cycle at this moment, and doing well.
I also take an unreasonable number of drugs, in addition to the Rituxian. Now, to be fair, most of these are not related to RA. But, many are. To give you an idea of my drug regimen, I have included two pictures that demonstrate the number of medications I use: one for morning meds and one for evening meds. Yes, I know it is a lot.