Arthritis on a Diabetes Blog

When it comes to living with both Type 1 diabetes and arthritis, I don’t experience the amount of pain and disability that burdens some of my favorite people in the DOC. Rick Phillips who deals with rheumatoid arthritis and ankylosing spondylitis shared his story on my blog a couple of years ago. Rick tirelessly advocates for people with diabetes, but he often admits that arthritis negatively impacts his life much more than diabetes. Molly Schreiber has had Type 1 diabetes for 28 years. Her rheumatoid arthritis is a formidable opponent and she deals with the worst that RA can dish out. In general I am doing okay when it comes to living with arthritis. Except when I’m not….

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I am good at diabetes.

I am bad at arthritis.

I have had a tough summer. Although I was diagnosed diagnosed with inflammatory spondyloarthropathy over 10 years ago, my problems are peripheral. My hands hurt and my thumb joints are shot. In May I woke up with horrible heel and foot pain which continues to get worse despite following doctor’s orders.

I don’t write about arthritis very often because I am a diabetes blogger. Type 1 diabetes is a constant in my life and I do little without taking diabetes into account. After 40+ years of T1, I have no major D-complications. At the same time diabetes is a “needy condition” that requires constant affirmation and is entrenched in my psyche. More than once I have mentioned that I deal with other inflammatory and autoimmune conditions in addition to diabetes. I once wrote about a skin problem called annulare granuloma and mentioned that I felt helpless in dealing with it because “When you have Type 1 diabetes, you get used to the idea that WHAT I DO MAKES A DIFFERENCE in my health.” I’ve never bothered writing about hypothyroidism because it goes hand-in-hand with T1 diabetes. Mine was discovered through a routine blood test 21 years ago. I’ve never struggled with symptoms and my Synthroid-generic dose is the same as prescribed in 1996.

Arthritis. This is the thing that I’ve not written about and it is the health problem that most threatens my Pollyanna “Life is great!” philosophy.

I think that some of the personality traits that make me “good” at diabetes make me bad at arthritis. Diabetes loves people who overdo things and power through when you don’t feel great. Diabetes thrives on doing the same thing over and over again. Arthritis does not reward overuse of my body and I know that I would feel better if I didn’t sync as many steps on my Fitbit. (Actually I put my Fitbit in the drawer a few weeks ago because I need to rest.) I know that I would feel better if I gave up playing golf. I quit tennis a dozen years ago and still feel sad about that. I don’t know about hiking, but I suspect that I would do better with fewer mountains and more walks around the block.

It all comes down to pain.

Unfortunately sitting at home doing nothing is worse than pain and diabetes is a bear when your body is glued to a chair. I have always been active and I attribute my relatively good health to exercise. Blood sugars are better with movement and I believe that exercise helps ward off D-complications such as heart disease and neuropathy. Transitioning to a couch potato life because of sore feet and swollen fingers doesn’t seem like an optimal life strategy to me.

But exercise currently brings me pain.

I am strong but pain makes me sad.

My primary arthritis diagnosis is inflammatory spondyloarthropathy and it is a type of arthritis where many people feel better moving rather than resting. It is a type of arthritis that fits my “can’t stand to sit down” personality. But my hands and feet are diagnosed as osteoarthritis. I’m struggling with achilles tendonosis, heel pain, and elbow tendonitis. Overuse “old people” conditions.

Back to diabetes. What happens to my blood sugars when I am not active? Mostly they get worse. But I can take more insulin and then they are OK. But I gain weight and my insulin sensitivity goes to h*ll.

I am a self-manager of my diabetes and my endocrinologist is totally mostly on board with that. Diabetes usually does best when you manage it in the moment (AKA Sugar Surfing) and my Dexcom G5 protects me from most of the submarine lows that drive my endo crazy. My rheumatologist has never gone ballistic at my decision-making, but he occasionally looks askance when I arrive at an appointment and say that I reduced the dosage of one medication and refused to take another. At the same time he is older than I am and still plays tennis. He goads me to get back to the courts and suggests that I wear an arm strap to help with elbow tendonitis and use more of the topical Diclofenac gel to ease pain. More than any of my other doctors he understands how my medical issues are woven together in a spiderweb of autoimmune and inflammatory conditions.

I am an uber-educated diabetes patient. I understand my disease and voraciously read diabetes research articles, websites, blogs, and message boards. I am an active participant in the DOC and credit my fellow PWD’s for most of my knowledge and activism. I arrive at my endocrinology appointments with printouts of BG statistics and always have a list of pertinent questions.

I am less capable when it comes to my arthritis. To tell you the truth, I am not completely sure of my diagnosis. I do not have rheumatoid arthritis (RA) and once you don’t have that, it can be hard to find a niche for your condition. My medical records reflect terms such as inflammatory spodyloarthropathy, inflammatory polyarthritis, and osteoarthritis.

When I look at the future, I am much more afraid of physical limitations due to arthritis than I am of diabetes. I don’t worry about diabetes complications and have never experienced diabetes burnout for more than five minutes. But what will I do if walking is unbearably painful, elbow pain blocks me from playing golf and carrying my grandchildren, and hand pain rules out opening a jar?

I am good at diabetes.

Unfortunately arthritis scares the bejesus out of me.

Pain is a formidable opponent.

Pain.

* The image for the pain measurement scale was purchased from shutterstock.com.

The Connection: Diabetes and Rheumatoid Arthritis – Part 3 of 3

Banner_Diabetes_Arthritis

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.

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Rick Phillips:  RA – Diabetes and Autoimmunity

Rick_Square HeadAs I move to wrap up this series, I am reminded that I am often accused of writing an epistle when a sentence will do the trick.  I cannot help it.  I am trained as a bureaucrat, so I tend to spin in place a lot with my writing.  That is a bad habit I am working to break.  If you have stuck with me up until now, I hope you have found the effort you expended a wise investment.

I really do owe a debt of gratitude to Laddie for publishing my work.  I am reminded that I am a guest here and the first rule of being a guest is to not overstay your welcome.  I hope I have not overstayed my welcome on Laddie’s site.  I am exceedingly grateful for her hospitality.  Rheumatoid Arthritis (RA) is something that interests me a great deal of course.

After diagnosis, I wondered:  “Are RA and Type 1 diabetes connected?  And if so, how?”  They are.  While I had never heard of such a connection before I was diagnosed with RA, the connection, the how, and why these diseases are connected really started to interest me.

First and foremost, RA is an autoimmune disease as is Type 1 diabetes.  In both diseases, it is thought that the autoimmune system mistakes helpful body tissue as being undesirable and in essence revs its engine to attack the body systems it finds offensive.

My dad loved war movies, so I tend to think of it like a war movie.  I imagine the autoimmune system (the General) hanging out in headquarters.  Suddenly, it notices some movement on the map; someone has mistakenly labeled that movement as the enemy.  The labeling is wrong, but the autoimmune system does what it does: it attacks.  It sends in tanks, missiles, aircraft carriers-you name it, to battle this new movement.  The trouble is the movement is not harmful or the enemy; it is the good guys.

In my case, my autoimmune system first attacked the insulin-making cells in my pancreas.  Later, it loaded up and started a war with my joints.  Still later, my autoimmune system got tired of hanging around with no new wars to fight, so I was diagnosed with a third autoimmune disease called Ankylosing Spondylitis (AS).  AS is like RA of the spine.  AS has pretty much the same disease elements as RA, this time just targeting the spinal area.  It hurts as well and I had never heard of it before the doctor said I had it.  Go figure, another prize in the “autoimmunity-gone-wild” lottery.

So, how are these diseases connected?  According to the Arthritis Foundation, there is an overlap between the diseases.  This is how they explain that overlap:

Research shows a genetic connection between rheumatoid arthritis and type 1 diabetes. In recent years, researchers have identified a gene called PTPN22 that strongly correlates with the incidence of type 1 diabetes as well as rheumatoid arthritis, juvenile idiopathic arthritis and other autoimmune diseases.  (Learn About Arthritis, 2014)

After one gets beyond that, finding the evidence for a link tends to get less pronounced.  A very large study in 2010 found the following evidence for a connection between arthritis and diabetes: “Among U.S. adults with diagnosed DM, nearly half also have diagnosed arthritis.”  At first blush, that seems like pretty compelling information for a direct link between the two disease conditions.  However, once one digs a little deeper, it is discovered that this link has more to do with Type 2 diabetes than Type 1.  More than half of the incidence of people with Diabetes Mellitus and arthritis were also judged to have arthritis-attributable activity limitation. While not saying it directly, it does suggest more of a relationship between Type 2 and arthritis than Type 1.

Of course, no matter how you cut it, RA and Type 1 are both autoimmune diseases.  Although I searched for several days and could not find a direct link, I still don’t think anyone will be surprised if one day a common thread between the 80+ autoimmune diseases isn’t found and shown.

There is one other very significant fact that needs highlighting.  Almost 3 in 4 people with RA are female (“Learn About Arthritis,” 2014).  No one knows why women are more susceptible to RA than men.  Whatever the reason, RA is a tough disease. The combination of RA and Type 1 diabetes is even tougher to deal with.  I hope this series has been informative.  If you would like to discuss it further, look me up at my blog at TuDiabetes or send me an email at Rphil2@Yahoo.com.

Special thank-you for help in preparing this series goes to: Erin Mattingly, for administrative support, Carol Eustice, Ask.com arthritis expert, and of course Laddie for allowing me to publish such a long blog series. (Laddie, I hope I did not run anyone off!)

The Connection: Diabetes and Rheumatoid Arthritis – Part 2 of 3

Banner_Diabetes_Arthritis

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.
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Rick Phillips:  My Personal Journey with RA

Rick_Square HeadThank 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:

Morning Meds

 

 

 

 

 

 

 

Evening Medications:

Evening Meds

 

 

 

 

 

 

 

The Connection: Diabetes and Rheumatoid Arthritis – Part 1 of 3

Banner_Diabetes_Arthritis

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

Rick_Square HeadFirst, 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.