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.

Morning medications:

Evening Medications:

* 

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 RA Diagnosis Story

First, thank you to Laddie for me inviting me to blog at her site, and especially encouraging me to blog about a subject that interests me greatly: 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 tell of how I was diagnosed; in the second, I will 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 independently 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.

While I have told my diabetic diagnosis story a number of times, I seldom get to tell my RA diagnosis story. I was officially diagnosed with RA in early spring of 2000. Looking back on things, I likely had it longer. (My best guess, around 1997.) But, like most things that sneak up on you, I had no idea that most people didn’t feel that bad. The turning point came in two parts. The first, was in the late summer of 1999 when my oldest son bought a 1999 Pontiac Firebird. It was truly a beautiful car.  My wife nicknamed it The Beast for its thunderous engine, high end stereo, and awesome looks. He brought the car home; proud, as he should have been, and he offered rides. I could not go because I simply could not get in. The car was too low to the ground and I was much too stiff to bend. Not riding in his new car, of which he was legitimately very proud, hurt my son’s feelings and I went inside and had a good cry.

The second involved my youngest son when I took him for a campus visit at the one college I love: Indiana University Bloomington. While he and all of the other parents and prospective students toured the campus that late winter day, I stayed behind, sipping coffee in the lounge.  I was the only parent to do so. There was no way I could walk and keep pace, let alone walk the distance required for the tour. Now mind you, it was a lovely day at a campus that I have always admired and I was with my son who was enthusiastic to be there. If ever a day was made for a parent to enjoy a brief walking tour, this was it. When I could not go, I told him and myself that I was letting him go alone because it was a part of growing up. In truth, it was the final step in recognition of the fact that something brutally wrong was going on in my body.

Later when asked what tipped the balance, I would often say it was the ride to and from campus. On both the way there and back, I had to get out of the car to stretch because my legs hurt so much. It was a 60 mile, one hour drive each way. Today, post treatment, I routinely make this drive without stopping or issue. It seems silly now that I stopped twice that particular day.

With that second affront to one of my sons, I knew I had to do something. So when I saw my endocrinologist, we discussed it and he ordered some tests. In short order, the hidden truth was revealed. My indicators for RA were simply off the charts and immediate action was required.

Within a few days, I saw a rheumatologist and the cycle started. My insurance company required that the first course of medication involve the exclusive use of Methotrexate.  Almost immediately, my mouth broke out in sores and I went to a newer drug, Arava.  This one also caused mouth sores, but was effective at a lower dose.

With the use of these drugs, I started monthly blood monitoring, something I was not as compliant with as I should have been. By the end of the sixth month, my doctor received insurance approval to move to biologic drugs.

Being diagnosed with RA was an awful punch to the gut. I had learned to live with Type 1 diabetes, despite being very angry about having the disease. With use of insulin therapy, I was able to somewhat make peace with the disease.

With the addition of RA, life certainly got more complicated. First, it meant extensive blood work. Instead of going every three months for an A1C, I was now going one to three times per month to check blood levels for RA factor and various blood chemicals.  It was doubly important to keep up with the blood work because too much of the immune suppressants could ultimately be deadly.

Just as important, I also faced a new reality with work. I loved the job I was doing at the time.  Men are often self-defined by their job and I was no different. But with the diagnosis of RA, I somehow knew that life would change. At 42, it was truly the beginning of the end of my work life and what I defined as Me. Yes, I was scared, but thank goodness I have a wonderful partner in Sheryl who helped me keep the train on the tracks for a few years.