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Posts Tagged ‘RA’

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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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.

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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

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

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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.

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It appears that my 2.5 year journey with Rituxan is coming to an end. A scheduled infusion was cancelled at the last minute by my rheumatologist due to side effects from the last infusion and lack of efficacy. For anyone who knows my journey with RA, it’s no secret that I’ve been through a gamut of treatment options. The list of previous treatments reads like a who’s who of pharmaceuticals for autoimmune diseases. I’ve tried the following in chronological order:

  • sulphasalazine (oral)
  • methotrexate (oral)
  • Enbrel (self-injection)
  • Meloxicam (oral)
  • Salsalate (oral)
  • Cimzia (self-injection)
  • Humira (self-injection)
  • Orencia (infusion)
  • Imuran (oral)
  • Leflunomide (oral)
  • Actemra (infusion)
  • methotrexate (self-injection)
  • Remicade (infusion)
  • CellCept (oral)
  • Rituxan (infusion)

That’s two NSAIDs, five DMARDs, and seven biologics. The reasons for stopping these treatments varied from experiencing side effects to lack of efficacy. Side effects included serious infections, low lymphocyte counts and infusion reaction – persistent migraine, nausea, flu-like aches and pains. I’m very hesitant to switch treatments as the options are getting rather slim. I’ve probably resisted dropping Rituxan longer than I should’ve for this reason.

The latest treatment being recommended by my rheumatologist is the newer drug Xeljanz which is called an “oral biologic”. My rheumatologist and I talked about this drug several years ago when it was first approved in the United States. But she wanted to wait until there was more information and experiences. It was not approved by a European drug agency for safety and efficacy reasons. Xeljanz works by inhibiting a molecule called kinase. Kinases are molecules linked to a cellular pathway, called the Jak-STAT pathway, that produce inflammation-causing cytokine proteins. In RA, it’s these cytokines that ultimately cause the tissue destroying symptoms. Potential side effects are pretty typical of immune suppressing medicines, such as increased risk of infections, but also include perforations in the stomach and intestines. I’m waiting for insurance approval and shipment from a speciality pharmacy. In the meantime, I’ll sign up for the co-pay assistance plan from Pfizer.

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Perhaps I spoke too soon. Rituxan infusions are supposed to be scheduled two weeks apart and the last one was received two weeks ago today. But today’s infusion was cancelled at the last minute by my rheumatologist due to side effects. Within a day of the last infusion, a series of ongoing migraines commenced. This was accompanied by nausea (I didn’t eat much for several days), achy joints (not the type of pain from RA but more akin to the flu), and just a general blah feeling. In the past I might experience 24 hours of flu-like symptoms but this far exceeded that. There are pre-infusion medications given in an attempt to alleviate side effects. For me these include acetaminophen (tylenol – for which I think the clinic charges $7.00!), 25mg of diphenhydramine (Benadryl) injected into the IV, and 80mg of solu-medrol (a corticosteroid) injected. These premeds did not help this time around.

A similar experience with Remicade infusions and methotrexate injections occurred in that ongoing migraines would result within a few hours or a day after receiving the medication. Working with my neurologist, a slew of prophylactic measures were attempted including promethazine (Phenergan) injections. Nothing seemed to work and the use of Remicade and methotrexate came to an end.

I’ve done well with Rituxan over the past 2.5 years. But it seems lately that the list of potential side effects are coming at me with force. These include infusion reactions, infections, low white blood cell count (my B cells are non-existent), body aches, and aching joints. According to the Rituxan website, one tip for infusions states, “Stay mindful of how you feel—even if you didn’t experience reactions in the past, they may still occur with future infusions. It’s important to tell your health care provider right away about any discomfort during or after treatment.” They also state, “Infusion reactions are the most common side effect of Rituxan treatment. Serious infusion reactions can happen during or up to 24 hours after an infusion. During clinical trials, less than 1% of people taking Rituxan experienced serious infusion reactions.”

A two month delay due to infections will now extend another month until an appointment with my rheumatologist to discuss next steps. Perhaps we’ll try Rituxan once again. Or maybe it’s time to move on to another treatment although the options are getting slim. Oh well…think I’ll go fishing tomorrow!

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