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Posts Tagged ‘infection’

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 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.

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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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A visit to my rheumatologist on Friday turned from a routine 15 minute visit into a 45 minute triage session. At the end, the rheumy mentioned that sometimes things can seem to swirl out of control and it certainly feels that way right now.

We discussed neck/shoulder/arm pain and muscle atrophy which increased over the past few months. My neurologist ran a large battery of tests including MRIs of the chest and brain, nerve conduction and EMG tests, and numerous blood tests. The only issue found of note was muscle dysfunction on the EMG. A myelogram/CT scan two month ago showed some nerve compression in the neck but the surgeon said it did not warrant intervention. My rheumy argued that a second opinion was now in order and said that they would contact two neurosurgeons for ideas about what to do.

I received a steroid injection into my right shoulder. Both shoulders have been crunchy and painful for over two years but have kicked up a notch lately to the point of being quite distracting during both the day and night. My rheumy is requesting that a radiologist reread a recent MRI of my chest to examine potential joint damage to shoulder joints. The MRI was originally ordered to look for potential inflammation in the brachial plexus nerves but caught images of each shoulder joint.

Blood tests were ordered and included routine complete blood count (CBC), metabolic panel, and inflammation measures. But immunoglobulin (Ig) tests were also ordered for the first time. Immunoglobulins are immune antibodies which may be indicative of fighting infections. These were seen by the rheumy as important given my long term battle with meningitis and now C diff bacteria. I just finished a second antibiotic for C diff, a particularly problematic gut bacteria that causes severe diarrhea and toxin-induced ulcers in the colon. I started on the antibiotic vancomycin for 14 days but it did not control the infection as another positive C diff test came back. My infectious disease doctor said that the bacteria was not likely antibiotic resistant but that my compromised immune system from RA and Rituxan was making it difficult for me to fight the infection. I was scheduled to receive the next Rituxan infusion in a couple of weeks but my rheumy suggested putting it off until the infection gets under control. The infectious disease doc put me on a new antibiotic called Dificid or fidaxomicin. It was recently approved for treating C diff infections. It cost $1,400 for 20 pills! I just finished that 10 day course but the symptoms persist. My rheumy asked me to contact the infectious disease doctor Monday and I also started the process of setting up an appointment to see my gastroenterologist who will want to do a colonoscopy to check on the physical status of the colon. In the meantime, the rheumy set me up with an immunologist to check my immune system particularly IgG antibodies which is involved in fighting infections. The rheumy told me that IgG infusions may be a possibility to help boost the immune system and help me fight the C diff infection.

All told including office visits, ER visits and hospitalization, the following specialists will have been seen over the past two months: emergency room, internist/hospitalist, radiologist, neurosurgeon, neurologist, immunologist, infectious disease, rheumatologist, and gastroenterologist. Trying to keep up with all of these issues and specialists is almost a full time job. I appreciate that my rheumatologist serves as the central care giver who really knows all of my conditions and treatments. Hopefully some relief will be forthcoming soon.

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keep-calm-it-s-only-c-diffThe comedy of medical errors continues after the myelogram/CT scan on May 21st designed to gather information about my neck and back. That intervention resulted in a case of bacterial meningitis, hospitalization, and ten days on a strong, broad spectrum (kills most everything) antibiotic called ceftriaxone administered via infusion through a PICC line. The meningitis was vanquished and the PICC line pulled. But then a secondary infection took root.

One of the listed side effects for cephalasporin antibiotics like ceftriaxone are that they kill many of the helpful bacteria living in the gut but do not kill potentially harmful microbes including one called Clostridium difficile or C diff. Symptoms of C diff include the following:

There is a lab test for the bacteria (don’t ask about how it is obtained). When C diff bacteria gain a foothold in the intestines, they release toxins that damage the intestines (colitis) and the toxins can get into the bloodstream. Dehydration is a major concern. It is a spore forming bacteria and the spores are difficult to kill. It is a common infection in hospitals and other health care facilities and is especially problematic in elderly, unhealthy, and immunocompromised patients (hey, that last one is me!). Over 500,000 Americans get C diff annually with almost 30,000 deaths associated with the infection annually. C diff is now seen as a more serious hospital related infection risk than even the much-feared MRSA staph bacteria.

Treatment for C diff starts with an antibiotic. Metronidazole, or Flagyl, is usually the first line antibiotic used for C diff. But my infectious disease docter went straight to the second line antibiotic, vancomycin, when he learned that I take Rituxan for RA and am immunocompromised. I’m currently taking an oral version of vanco. Up to 20% of patients relapse after the first round of antibiotics and must take additional rounds. If the good bacteria are wiped out, then it stands to reason that probiotics may be helpful in repopulating these flora. The research results on probiotics for C diff are mixed but my doctor recommended that I take them. I opted to take a medical grade probiotic called VSL #3. There are published research studies that the bacteria strains in VSL #3 help colitis symptoms. It’s available at many pharmacies but is kept behind the counter in a refrigerator.

It seems that RA is the gift that keeps on giving. I’ll just be glad to move onto the more “traditional” primary RA issues!

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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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