Posts Tagged ‘treatment’

It’s been so long since I posted here and felt that some sort of update was in store. I’ve been on short term disability (STD) since January 1st. I must be on STD for six months straight in order to move to long term disability (LTD). My workplace has been wonderfully supportive and has great benefits to aid in this process. All benefits remained in place during this time. Not working has been a real blessing in terms lowering stress levels and helping with rest. While being a tough decision, it was clearly the right decision. I walked away from a lifelong career of teaching that was very rewarding and was what I was made to do. Long term disability starts July 1 at which time I will officially be separated from my employer and will receive paychecks from the LTD insurance company and benefits through COBRA. I will continue to engage in some consulting work to supplement my income.

In the midst of the work transitions, a 7th joint surgery occurred a couple of weeks back. This was on my left shoulder and was basically a repeat of the surgery done on my right shoulder in January. The AC joint was damaged by RA to the point where there was no cartilage and bone was rubbing on bone. The surgeon cut off the end of the collar bone and shaved the shoulder bone to clean up bone spurs. The rotator cuff was in good shape on the left shoulder unlike the right side. Arthroscopic surgery is the way to go as the healing goes much quicker and pain is much less. The shoulder remains quite stiff and I can’t use it much for the next couple of months. However, the right shoulder is causing me more discomfort and that is because the surgeon repaired the rotator cuff which takes a long time to heal.

I haven’t been on any RA treatments since last December. I’ve run the gamut of most available RA treatments and it’s evident that they either haven’t worked or the side effects including migraines, GI issues, and infections were unbearable for me. I can say that not taking meds allowed me to avoid fighting the side effects – this has been pleasant. But the RA disease process has picked up during this period. Joint swelling, pain, and fatigue are on the rise and I know that this can bring more damage from the RA processes. I see my rheumatologist next week and we’ll develop a plan for the future.

In the midst of the craziness, we are moving from Seattle to San Luis Obispo County, CA this summer. This decision was primarily based on our desire to help some friends start a new church in the city of San Luis Obispo near Cal Poly State University. One of our Associate Pastors at our home church in Seattle will be leading the church and there is a team of people going along to help. The new church is called Vista Church. Some people wonder why we would do such a move but this is how churches get started – they are planted by people. Not only will we be able to help with the new church, but the move to the Central California coast will allow me to enjoy sunny and warmer weather and hopefully this will make my body feel better. Our house already sold in a couple of days (the market is nuts in Seattle) and we are currently looking for a house in Cali.

Transitions are a part of life. It’s much easier to sit back in your cozy chair and avoid changes. But getting on the roller coaster and enjoying the ride instead of fighting it makes the journey much more enjoyable. I’ve learned to trust that God will take care of you no matter what transitions life brings.



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Given the fact that there are a slew of RA medications laying on the failure heap, I’m willing to move outside the box and so is my doctor. The latest drug to be tried will be secukinumab – brand name Cosentyx by Norvartis. This biologic is currently approved by the United States Food and Drug Administration (FDA) for the autoimmune diseases psoriasis, psoriatic arthritis (PSA), and ankylosing spondylitis (AS). Cosentyx is an interleukin 17 (IL-17) inhibitor. IL-17 is a cytokine produced by T cell lymphocytes and is connected with autoimmune inflammatory responses. I reported on clinical trials with secukinumab for RA back in 2012. In a recently reported clinical trial being conducted for RA, patients demonstrated improvement over a one year treatment period. Safety and side effect profiles match other biologics with increased risk of infections, allergic reactions, changes in liver and blood tests, and cases of inflammatory bowel disease.

My official diagnosis has been seropositive rheumatoid arthritis due to positive rheumatoid factor (RF) tests, classic RA symptoms like symmetrical bilateral presentation, and bone erosions. But I’ve also shown symptoms more associated with AS like tendon insertion tearing, large joint involvement, and uveitis but without a positive genetic marker for AS (HLA-B27). In addition, my grandmother dealt with psoriasis and her brother had a debilitating case of ankylosing spondylitis. My insurance approved this drug for my use and I will begin the weekly loading dose self-injections as soon as they are shipped. We’ll see how I respond to this newest option.

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As noted in another post, I seem to have a refractory case of rheumatoid arthritis and have even been labeled as such by my rheumatologist. I’ve been on 16 different RA medications (see list bel0w) since being diagnosed in early 2009 (see https://rheumatoidarthritis.net/living/already-shot/). Some of these medications were taken in combination with one another. For example, methotrexate and Humira. All of these medications failed for a variety of reasons.

The latest drug on the heap of failed drugs is Kineret. I started injections starting Feb 7 after finally getting over a thrush infection which required two different anti-fungals to control. Within a day I started getting migraines and nausea. The migraines were present every day and increased in intensity to the point where I ended up taking migraine abortive medicines multiple times to knock them down. This happened after only having two significant migraine episodes the entire month of January. The nausea was primarily in the lower abdomen, got bad the second day, and increased to the point where it was waking me up in the middle of the night. I was not able to function well during the day. One evening I experienced sharp pains in the lower abdomen and also had some diarrhea periodically . Upon waking one morning, I just couldn’t stomach (pun intended) the thought of injecting Kineret and dealing with the migraines and nausea anymore. I contacted my rheumatologist and asked what to do. She stated, “I agree with stopping Kineret – thanks for trying. Let me chat with my partners to see what they think. There are several new drugs out for psoriatic arthritis that may have early data for RA too.

It’s hard to fathom untreated RA as the impact can be debilitating and disabling so treatment is needed. As my rheumatologist mentioned at the last appointment and in the recent message, it may be time to try something experimental and off label which would require insurance approval. Perhaps it’s time to investigate clinical trials as there are a host of drugs being tested for RA.

Rheumatoid Arthritis Drug  Duration  Reason for Stoping
Sulphasalazine oral

1 week

Allergic reaction – hives

Methotrexate oral and self-injection

2 years

Triggered migraines

Enbrel self-injection

5 months

Lack of efficacy

Meloxicam (Mobic) oral

3 weeks


Salsalate oral

3 weeks


Cimzia self-injection

5 months

Lack of efficacy

Humira self-injection

1.5 years

Reduced efficacy over time

Orencia infusion

1 year

Reduced efficacy over time

Imuran (azathioprine) oral

5 months

Gastric pain, nausea

Leflunomide (Arava) oral

5 months

Gastric pain, nausea, diarrhea

Actemra (tocilizumab) infusion

5 months

Raised cholesterol and triglycerides

Remicade (Infliximab) infusion

6 months

Triggered migraines

CellCept oral

6 months

Gastric pain, nausea

Rituxan (Rituxamab) infusion

2.5 years

Reduced efficacy over time, recurrent and serious infections

Xeljanz oral

3 months

Triggered migraines, gastric pain

Kineret (Anakinra) self- injection

1 week

Triggered migraines, nausea, diarrhea

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It’s been a little over two weeks since I had arthroscopic shoulder surgery. At the post-op followup visit with the physician assistant (PA), an x-ray was done and the steri-strips placed across the small incisions were removed. The incision scars are quite small FullSizeRender (3)compared to other surgeries (see photo). There remains a large area of bruising around the front incision where fluids pooled up after the surgery. I was told that the sling was not necessary except to provide relief and to send a message to others not to grab my hand or hug me!

The PA showed me 24 photos of the procedure and explained what was going on in each one. One showed a grinding tool right above the rotator cuff which had some damage from a bone spur right above the tool. The tool was


bone spur above and rotator cuff below

used to remove both the damaged rotator cuff tendon tissue and the bone spur. In the next photo, the tool is shown working on removing some bone tissue on the end of the clavicle. Finally, a space between the acromium and clavicle is visible after removing about 1/2 – 3/4 inch of the clavicle. The x-ray shows an that there is an open space where the AC joint used to exist. Bone will no longer grind on each other. The x-ray technician asked who did my neck surgery as she “sees all” on the image. The screws and plates are visible on the image.

I was cleared to start physical therapy and was given a prescription. I went upstairs to the PT clinic run by the surgery group and scheduled PT starting February 17 with two sessions each week for six weeks. The goal is the begin stretching and moving to strengthening.

For the present, I’m careful with the shoulder and avoid moving it too much as any movement can cause it the tire easily and become painful. But without being immobilized, I find myself going into usual movements and paying for it later. Overall, recovery from arthroscopic surgery has been much easier compared to open incision surgeries and I’m thankful for this technology.

In the meantime, I still can’t start my new RA treatment, daily Kineret injections, as I’m battling a thrush fungal infection. I see an ear, nose, and throat doctor tomorrow to address the ongoing cough and the thrush infection.

FullSizeRender (1)

grinding tool removing bone tissue on clavicle








FullSizeRender (4)

opening between acromium and clavicle after removing bone tissue








FullSizeRender (2)

X-ray showing end of clavicle removed. Screws and plates are visible in neck from previous surgery

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It’s the 4th Annual Rheumatoid Awareness Day. Please read Dana Symon’s excellent blog post listing seven important facts about rheumatoid disease. I’ll focus on Fact # 2.


Upwards of 30% of patients do not respond to current treatments. Lack of response to treatment is called “refractory”. Unfortunately, I’m one of those refractory people. I’m currently getting ready to start RA treatment number 12 (see this article). This treatment, Kineret, is the last RA treatment my rheumatologist said is available for me. If it doesn’t work or the side effects are intolerable, then we’re going to try off-label medications on an experimental basis. The problem is that the Kineret is sitting in my refrigerator while I wait to get over a thrush fungal infection.

Read all the other great blogs written for the 4th Annual Rheumatoid Awareness Day at http://rawarrior.com/rheumatoid-awareness-day-blog-carnival-2016/!

As another way to share awareness, please read the excellent article at Creaky Joints by Dr. Jonathan Krant on the difference between osteoarthritis and rheumatoid arthritis.

Shoulder recovery is going well. I’ll give an update soon.

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I don’t believe that living with RA means we’re always looking over our shoulders for infections. However, it is important to make some informed decisions.

Since being diagnosed with RA, I’ve dealt with a variety of infections. Besides the usual viral, upper respiratory infections, there have been a few bacterial infections. The first was a urinary tract infection (UTI) that is not very common in men. A dose of antibiotics took care of it in rapid form. A few years’ later, chronic sinus infections were the plague of the day. After culturing bacteria from samples, many months of multiple antibiotic treatments were in order. When that failed to take care of the infection, sinus surgery finally cleared up the issue. The most recent infectious ordeal was a battle with bacterial meningitis. Two trips to the emergency room and admission for an overnight stay in the hospital were the result of this recent escapade. It culminated in the installation of a peripherally inserted central catheter or PICC line so I could self-infuse a strong antibiotic. This infection didn’t just come from the blue but was likely connected to a lumbar puncture conducted for injecting iodine contrast for a CT scan of my neck. The fact that I’m immunocompromised from taking the biologic Rituxan (Kelesidis et al., 2011)1 caused the doctors to take an aggressive approach in treating the meningitis even though it was considered a “mild” case. One doctor compared me to an “immunocompetent” person who is able to better fight off an infection.

In a study predicting infections in RA patients, it was found that 64% had at least one infection and almost 50% had an infection requiring hospitalization (Doran, et al., 2002)…

Read the rest of the article at http://rheumatoidarthritis.net/blog/is-there-an-increased-risk-of-infection/

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After the latest ordeal of the past week, the weekend was pretty low key although I was still fighting bad headaches, dizziness, and general malaise. On Monday afternoon, a nurse from the hospital’s emergency department called to say that after four days, the spinal fluid culture came back positive for a bacteria called Streptococcus viridans. They wanted me to come back to the ER immediately. Upon arrival, an IV dose of the antibiotic Ceftriaxone was given along with 1000ml of saline. The doctor came in and said that they were admitting me to the hospital for meningitis which is a general term for an infection of the cerebral spinal fluid and tissues around the brain and spinal cord. This can be a very serious disease and this was the reason for admission. An infectious disease doctor came by to discuss my case. He indicated that this strep bacteria is commonly found on the skin, mouth, and nose and is rarely found in meningitis. He suspected that the original lumbar puncture of the myelogram from the previous week introduced the bacteria into the spinal fluid. While the number of bacteria found in the culture was low, the fact that I’m immunocompromised from taking Rituxan for RA caused the doctors to take an aggressive approach. The infectious disease doctor prescribed a course of IV treatment with the antibiotic Ceftriaxone. This began while in the hospital and requires two doses every 12 hours for 10 days. Fortunately, the IV infusion only takes 10-15 minutes. It was decided that I could be discharged after one sleepless night in the hospital (hospitals are not places to get a good night’s rest). But I would need to continue the IV antibiotics for the next nine days. IMG_0072Instead of returning to the infusion center twice a day, a peripherally inserted central catheter or PICC line was put in (see picture). This was a rather intense installation process as the catheter is put into a larger vein in your arm and the tube goes all the way to an area close to the heart. It involved a specialist nurse using ultrasound guidance and a sterile field in order to get the tube in the right place. The PICC line allows the patient to self-administer the medicine at home. A local speciality infusion pharmacy handled the prescription and a nurse came to my house with the medicine and supplies and spent over an hour teaching me how to safely administer the antibiotic. After self-injecting RA meds over the years, this process is fairly easy.

So an entire week of my life was devoted to a variety of medical processes and procedures. It all began with an attempt to image potential joint damage in my neck and lower spine and ended up with a serious infection. And it’s not quite over as I have an electromyography(EMG)/nerve conduction test with my neurologist tomorrow afternoon to check on the potential source of my muscle and nerve pain – the original reason for the myelogram. And then an appointment with the infectious disease doctor on June 4th to check progress and hopefully remove the PICC line. Such is life in the RA fast lane!

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