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My battle with RA unofficially began with a first autoimmune system in 2004 and officially with a diagnosis in 2009. Since then it’s been an ongoing battle with symptoms, multiple joint surgeries, and trying every treatment available to modern medicine. But for now the disease won forcing me to stop working. I’ve been on short-term disability since January 1st and starting July 1st, I will begin long-term disability (LTD). My rheumatologist and I have talked about this over the past couple of years and it finally came to the point that I just couldn’t keep up with work.

I am fortunate to have an employer that takes out a LTD insurance policy for each employee. The cost of this policy is quite low per person but the benefit is a real blessing when it is needed. There are very few employees who need to access this benefit and in fact, I was the first case for my human resources case manager. The process for applying involved starting with short-term disability (STD) and having my rheumatologist complete Family Leave and Medical Act (FLMA) paperwork. STD is covered by my employer, initially lasts for 3 months at full pay and benefits, and can be extended for another 3 months at 60% pay and full benefits. During the STD, paperwork for LTD was processed and include multiple forms and having all medical records sent to the case manager. Once all the paperwork was in, a decision came rather quickly to approve LTD.

One requirement for LTD was being off work for at least 180 days. That is accomplished with STD. The benefit for LTD includes 60% of my base salary plus continued employer contributions to my retirement account. I will eventually apply for Social Security Disability Insurance (SSDI) and the LTD insurance provider uses legal staff to help in the application process. Once SSDI is approved, any benefit given will be used to offset that portion of my income benefit from LTD guaranteeing that I’ll be insured of receiving the 60% of base salary. I’ll be able to use COBRA to continue health, dental, and vision for up to 29 months and once SSDI is approved, I can move to Medicare and supplemental insurance. The LTD is for 24 months and if I remain unable to work, the classification will change to “disabled” and the benefits remain the same. My LTD insurance provider has a return to work incentive whereby I can engage in part time work up to 40% of my base salary essentially providing me with 100% of my salary before disability. If SSDI is approved, the return to work incentive becomes much more complicated but I’ll cross that road when I get there.

This process brought about a whole host of feelings from relief of the stress of work to facing the unknown. Upon diagnosis, one of the first thoughts that came to mind was the notion of being disabled someday. That day has arrived for me. But I’m so thankful for supportive family and friends and an employer that really cares about us and had the forethought to provide LTD insurance.

The good news is that with the advent of biologic medicines, the rates of RA-induced disability are lower than in previous times. However, there remain a large proportion of RA patients who end up unable to work and are at the mercy of SSDI alone. This puts undo hardship on those who suffer from the debilitating effects of RA.

It’s been six weeks since right shoulder surgery was performed in order to resect the acronomim and clavicle joint (AC joint) and remove rotator cuff tissue that was damaged by bone spurs. At a follow-up with the surgeon today, he indicated that patients tend to talk about still having pain but of a different quality. This is true for me in that the joint pain is much diminished but dull aches remain. He said this is primarily from healing bone and surrounding soft tissues. He cleared me for stepping physical therapy up from gentle stretches to strengthening exercises. Given my battle with RA, he said that recovery is likely to be longer than normal.

We then turned attention to my left shoulder as it’s been bothersome for quite some time as well. The surgeon gave a steroid injection into it about 8 weeks ago but there was only about a week of relief. He got an x-ray during the visit and discovered that there was acronomim bone rubbing on clavicle bone with no joint space visible. He attributed this to inflammatory arthritis (RA) and said that the cartilage between the bones was damaged but there were no large bone spurs visible. Like with the right shoulder, surgery would be needed to repair this joint and he suggested waiting at least three months after the other surgery. This would be good timing as my insurance out of pocket costs are met and will be until the end of June. We will schedule surgery at another follow-up appointment in six weeks.

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.

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

Gastritis

Salsalate oral

3 weeks

Gastritis

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

Shoulder Surgery – Week 2

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

FullSizeRender

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.

the-real-rheumatoid-disease-fact2.png

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.

Warning: This post includes images of surgery incisions. 

I decided to write regular posts describing recovery from shoulder surgery…sort of a diary documenting the experience. Being that this was my 7th surgery with general anesthesia, I began to feel like a “frequent flyer”. In fact, the nurses at the outpatient surgery center remembered me from previous procedures. Fortunately I reported at 7:15 a.m. and I was the surgeon’s second procedure of the day. This means that I didn’t have to go without food or coffee for long and could be back home relatively early in the day. After paperwork, I was escorted to a pre-op room where a nurse went over medications and inserted an IV IMG_1426IMG_1428catheter (see pic). The surgeon came in to answer any questions and he used a permanent maker to write on the correct shoulder. He also asked about how my other shoulder was feeling since he injected it with steroid the previous week. The anesthesiologist also came in to discuss the anesthesia. He gave me a scopolamine patch behind my ear to reduce nausea. I waited about 15 minutes before being escorted to the operating room. It’s a little strange walking into the OR and not being wheeled into the room on a gurney.

The OR are always kept quite cool. There were two assistants/nurses and the anesthesiologist in the room and they all said hello. There is music playing and I asked who got to pick out the music – the anesthesiologist! They had me lay on a weird table and I was strapped in around the waist and compression leggings were put on. Being that this was my 7th experience, I was not nervous. I was hooked up to a blood pressure cuff and pulse/ox probe. The anesthesiologist mentioned that he was going to use a nerve block to help control pain after the surgery. A mask was placed over my mouth and nose and I started breathing oxygen. Within a few minutes they started the IV and gas anesthesia. This time I experimented fighting it and staying awake as long as I could. It didn’t take long and I said “goodnight”:)

I woke up to the post-op nurse calling my name and I felt pretty good. An injection of the narcotic fentanyl was given to help with pain. After 30 or so minutes, I was moved to another room anIMG_1429d my wife and pastor came back. The surgeon met with my wife and told her that he cut off of end of the collar bone, cleaned up the AC joint bone spurs, and repaired the rotator cuff which was right under the AC joint and was damaged by the bone spurs. The biceps tendon was fine. I was given two oral oxycodones and a hydroxyzine which is an antihistamine to help with narcotic side effects. I was given post-op instructions. After dressing, I was taken to my car in a wheel chair. I asked my wife to stop at Starbucks and pick up a grande, two pump chestnut praline latte – yum. After getting home, a breakfast of toast and eggs filled an empty stomach. The shoulder felt pretty good because of the nerve block but I took the oxycodone and a hydroxyzine on a regular 4 hour interval. Dear friends came by with some delicious fried rice and a coconut cream pie – my favorite!

IMG_0110I found that only shirts with button or zipper fronts could be used as there’s no way to slip one over the head without moving the shoulder. Sleep was awkward but I found I could lie on my back or left side. At most 3-4 hours of sleep would be had at a time and I would get up to take oxycodone and eat a little food to avoid nausea. A very thick bandage was placed on the shoulder in the OR and I was instructed to remove it on day 2. The orange must be betadine or something similar for sterilizing the area. There were 3 incisions – two on the front and one of the side – where the surgeon inserted arthroscopic instruments and a camera. I replaced the bandages and attempted to ice the area as much as possible. As long as I don’t move the shoulder, the pain levels are very tolerable. Using my left arm for daily functions works well and I well experienced in this after having surgery on my right elbow last year. I’m thankful for arthroscopic surgery as opposed to open incisions. I watched several videos of similar procedures to get an idea of what to expect.

IMG_1431

 

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I am surprised how well I feel today. This was certainly not the case with neck and sinus surgeries. A follow-up visit will take place next week and physical therapy will start in six weeks.

On a side note, it was very sad to hear of the death of music legend Glenn Frey from RA. It’s not clear what exactly happened but this drives home the point that RA can impact much more than joints and dramatically increases mortality.

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