Prednisone – Side Effects Worse than RA Symptoms?

It seems that many RA patients have this love-hate relationship with prednisone. For me, it’s all hate. Every time RA symptoms seem out of control, my rheumatologist mentions taking some prednisone at least short term to knock down the symptoms. I understand the rationale. If a powerful anti-inflammatory like prednisone can be used, the disease modifying and biological drugs have an easier and quicker time impacting the disease. And the suggestion is given out of compassion in an effort to make me feel better. For that I’m appreciative. But my response tends to be, “I’d rather live with the symptoms of RA than with the side effects of prednisone”.

For me, even taking 1 mg of of prednisone brings about side effects with which are difficult to deal. I get so wired that sleep is impossible. A couple days of that and nobody wants to be around me. I get this constant jacked-up feeling making it difficult to relax. This makes me want to run around and keep busy with projects contributing to joint pain and fatigue. There’s a vicious cycle of mood swings that my family can easily see. I also get a voracious appetite causing me to eat anything that is not nailed down.

I also refuse to start long term treatment with prednisone. I’ve seen what it’s done to a colleague at work in terms of weight gain (also hard on the joints). The other long term side effects sound pretty nasty and include high blood sugar, increased risk of infections, thinning bones, impact on adrenal gland hormone production, and slower wound healing (see the Mayo Clinic’s site). There is a risk of glaucoma in the eyes and with my mother’s difficult case of glaucoma, that is something I should probably avoid. I remember 9 years ago when I had my first autoimmune symptom, uveitis in both eyes, the ophthalmologist prescribed a strong dosing regimen of prednisone drops. It was every two hours and I was to get up in the middle of the night and put in drops. He was adamant about doing this in order to save my eyes from long term damage. But he also cautioned me that I couldn’t take it for more than a month since steroid induced glaucoma was a real danger. Adding to these long term side effects is the fact that it’s difficult to wean off of corticosteroids (check out RA Guy’s recent post).

Yes, I keep a bottle of prednisone pills in the cabinet. But I try to avoid using them like the plague.

Photo credit: By D4duong (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

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“Oh No I Can’t”…Changing RA Treatment Regimen Again

I received an official rheumatoid arthritis diagnosis almost four years ago. In that period of time I went through multiple treatment schemes (see the My Meds page) including four biologicals (Enbrel, Cimzia, Humira, and Orencia) and three DMARD chemicals (sulphsalazine, methotrexate, and Arava) in addition to numerous NSAIDS and the obligatory prednisone. As mentioned in blog posts over the past couple of months, it became increasingly apparent that the combination of Orencia and Arava was just not working. Sticking my head in the sand and ignoring the signs could only last so long while my wife and doctor tried to convince me that it was time to try something else. The evidence was becoming overwhelming…unrelenting fatigue beyond comprehension, increase in the number and intensity of swollen and tender joints, new joints including one shoulder and both hips presenting with signs of attack by RA, missed work, and a level of brain fog never experienced before. In addition, it felt like the monthly Orencia infusions might just as well have been plain saline solution as there was no improvement afterwards. On top of that, Arava was wrecking havoc on my digestive system and the bathroom and I became quite friendly.

While driving into the doctor’s office today, the inevitable started sinking in and I got nervous wondering what would happen. Most of this anxiety is probably grounded in the fact that I’ve been through a slew of treatments and I was feeling like options were beginning to run out. After an exam and conversation about symptoms, my rheumatologist emphatically stated that it’s time to change treatment. She continually expresses hope that we can find a medicine combination that will work for me. She got out a piece of paper and made two lists. The one on the left was for DMARDS that I haven’t tried yet and she wrote down Imuran and Cellcept. On the right she listed biologicals that I haven’t tried and she listed Remicade, Rituxin, and Actemra. In the middle she listed the newly approved oral biological Xeljanz which she dismissed as a possibility for now stating that she wanted to see more long-term data on efficacy and safety before widely using it. She recommended Imuran since it’s been around longer and has better efficacy data for treating RA. Imuran is an immunosuppressant commonly used to help organ transplant patients avoid tissue rejection. It is also used to treat many autoimmune diseases including RA, lupus, and MS. Since three TNF blockers didn’t seem to work well for me, she argued against Remicade but said that we’d keep that option on the list just in case we want to try it later. She said that Rituxan helps some of her RA patients but not as many as she would like. Actemra is the newest antibody biological for RA approved in the United States and she said that she’s seen it help some of her patients. It’s different from the TNF blockers and Orencia in that it targets interleukin 6 which is part of the autoimmune processes linked to RA. So we landed on the Imuran/Actemra combination and await insurance approval to begin the infusions. A trip to the lab for blood tests to establish baselines were ordered. In the meantime, doses of prednisone are prescribed to knock down inflammation.

Changing treatments brings about many questions but also hope that maybe it will provide some relief. Because relief would be a good thing right now!

Creative Commons photo credit: http://www.flickr.com/photos/busy-pochi/5170100206/

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Brain Fog (Cognitive Dysfunction) Caused by RA Medicines

Several years ago I wrote a post about brain fog caused by the biochemical processes of rheumatoid arthritis. The inflammatory chemicals, including cytokines, produced during an autoimmune response can impact nervous system functioning and cause brain fog – or more accurately, cognitive dysfunction. The best way to describe this for someone who doesn’t have RA is to think about how their brain feels while they have a bad case of influenza.

Lately I’ve been wondering about cognitive dysfunction caused by the vast array of medications used to treat RA. This wondering is grounded in the fact that for the past few months I’ve just not felt sharp in thinking and the timing of that goes along with some changes in medication and dosing. I was also reminded of a colleague years ago who was battling multiple sclerosis, another autoimmune disease, and how the medications he was taking caused changes in his cognitive functioning to the point where he could no longer perform his job effectively resulting in his taking disability leave. At the time I didn’t understand what was going on with him but now I have empathy.

I spent a little time exploring the side effects of various medications used to treat RA and its symptoms. Below is a list of side effects related to brain functioning. This confirms what I hypothesized…these drugs can impact cognitive functioning. I suspect that part of my recent “fogginess” is a combination of the biochemical processes of RA coupled with the side effects of my treatment regimen. Like with any side effect, one must consider the tradeoffs. If I don’t take the RA meds, I’m more prone to permanent tissue damage. If I take the meds, I have to learn to manage the brain fog. I’m done writing this post now as I can’t focus any more attention to complex tasks!

Disease Modifying (DMARDs)

Methotrexate[i]

• dizziness
• drowsiness
• headache
• confusion

Plaquenil (hydroxycholoroquine)[ii]

• Blurred vision or eye problems
• Headache

Arava (lefunomide)[iii]

• Headache

Imuran (azathioprine)[iv]

• Lightheadedness or fainting

Biologicals

Enbrel[v]

• Blurred vision or sudden change in vision
• Lightheadedness, fainting, seizure, or trouble thinking
• Depression, or mood or behavior changes
• Mild headache or dizziness

Humira[vi]

• Changes in vision or eye pain
• Headache

Orencia[vii]

• Dizziness, drowsiness, or lightheadedness.
• Headache

Rituxan[viii]

• Changes in vision
• Confusion
• Dizziness, lightheadedness, or drowsiness
• Problems with coordination or speech
• Anxiety
• Trouble sleeping

Anti-Inflammatory

Prednisone[ix]

• Nervousness
• Trouble sleeping
• Confusion, depression, or mood changes
• Seeing or hearing unusual things

Pain Killers

Tramadol[x]

• Lightheadedness, dizziness, or fainting
• Severe sleepiness or unusual drowsiness
• Feeling nervous, anxious, shaky, or unusually happy
• Feeling of constant movement of self or surroundings
• Headache
• Trouble sleeping

Tylenol 3 (with codeine)[xi]

• Hallucinations or unusual thoughts
• Lightheadedness
• Sleepiness

Vicodin (hydrocodone)

• Drowsiness
• Feeling faint
• Dizzy
• Confused
• Feeling unhappy or unwell
• Head pain
• Nervousness
• Sluggishness
• Mood changes
• Anxious
• False sense of well-being

Sleep Aides

Ambien (zolpidem)[xii]

• Lightheadedness
• Seeing, hearing, or feeling things that are not really there
• Unusual or disturbing thoughts or behavior
• Confusion, blurred vision, or problems with balance
• Dizziness
• Headache
• Memory loss

Lunesta (eszopiclone)[xiii]

• Abnormal thinking and behavior
• Anxiety, aggressiveness, confusion, depression, or dizziness
• Headache
• Memory loss

Elavil (amitriptyline)[xiv]

• confusion, agitation, hallucinations
• Changes in vision such as trouble focusing
• Drowsiness or dizziness
• Seeing, hearing, or feeling things that are not there

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:50mgtramadolhclakyma.jpg

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[i] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/

[ii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0010621/?report=details#side_effects

[iii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0010881/?report=details#side_effects

[iv] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0009164/?report=details

[v] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0010203/?report=details#side_effects

[vi] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0008825/?report=details#side_effects

[vii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0008771/?report=details#side_effects

[viii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0012019/?report=details#side_effects

[ix] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0011828/?report=details#side_effects

[x] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0012486/?report=details#side_effects

[xi] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0009704/?report=details#side_effects

[xii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0012721/?report=details#side_effects

[xiii] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0010201/

[xiv] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0008944/?report=details#side_effects

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Sinus Surgery Recovery

RA patients are commonly immunocompromised due to the drugs they take. Since RA is an autoimmune disease where the body’s immune system attacks itself, the drugs are often designed to slow down some part of the immune process. Read any of the side effect materials of biological or chemical treatments for RA and one of the first on the lists will be upper respiratory infections. That includes sinus infections which are ripe for problems given their moist, warm environment. Add any anatomical problems preventing drainage and infections are going to crop up. As previously documented in this blog, I’ve battled sinus infections pretty much ever since starting on RA treatments. That led to multiple treatments including antibiotics, decongestants, antihistamines, steroids (sprays and oral), and sinus irrigations which all failed to take care of the infections. That led to endoscopic sinus surgery on Tuesday. The surgery had four goals – correct a deviated septum, clean out the ethmoid sinuses, clean out the maxillary sinuses, and reduce the turbinates which are radiator-like flaps in the nose. There are no external cuts as the surgeon uses the scope and a camera to conduct the procedure.

After having three surgeries on my ankles for RA related issues, I had a pretty good idea about the process in general including anesthesia. But operating on the head near the eyes and brain was a new experience. My ear, nose, and throat (ENT) doctor is very experienced doing this kind of surgery so I had full trust in her capabilities. I reported at the outpatient surgery center in the morning and they immediately started me on large doses of Afrin spray which would reduce the bleeding during surgery since the nose and sinuses have some of the most blood vessels of anywhere in the body. You just have to love the wonderful clothing they make you wear which included a gown open in the back, footies, and a cap to cover my head. The anesthesiologist met with me and I told him about previous nausea from general anesthesia and he let me know he would give me everything he could to help manage that. I was led into the operating room which was very cold. I climbed onto the table and the anesthesiologist started an IV. They strapped me down to the table and after a few comments, I went to sleep pretty fast.

The next thing I remember was slowly waking up in a recovery room with an ice pack on my face. I could not breathe out of my nose as they had it packed to prevent bleeding. The nurse gave me some jello, cookies, and a drink. She also injected some fentanyl in my IV for pain. As soon as I could get up, I got dressed and my wife came back to be with me. By noon, I checked out and went home stopping at the pharmacy to pick up some Vicodin for pain and another round of antibiotics.

The first 24 hours were not pleasant. I could not breathe, had nausea from all the drugs and blood draining down my throat, and could not sleep. Add to that a terrible headache which I found out from the surgeon was common right after sinus surgery. I couldn’t wait until the next morning when I went to the doctor’s office to have the nasal packing removed. The gory details will be spared but all I can say is what a relief! I immediately felt much better. The bleeding and inflammation causes lots of pressure and pain that feel like a sinus infection but regular irrigation with saline solution has started to clear that out. I also added some oral prednisone that I use for RA flares. After 48 hours I can breathe through both sides of my nose for the first time in months!

During this time, RA symptoms have been pretty much under check. The copious amounts of pain meds and the prednisone probably help. Add to that the fact that physical activity has been curtailed and joints aren’t being used. Rest is ordered for the next couple of weeks.

My rheumatologist has great hopes for my long term ability to fight off sinus infections after having the surgery. She said that about 10% of her RA patients on biological medicines have recurring sinus infections and that sinus surgery provides relief for most of them. Stopping RA treatment is not a recommended option as the chances for long term damage is too great.

At least I have a great family and set of friends who are helping to care for me. And that includes one of my cats Bella who joined me on the couch this morning!

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RA Pain – Types, Causes, and Treatments

I’m at a loss about how to describe the various types of pain I’ve experienced with RA. As I prepare this post, all of my PIP finger joints (middle joint) are swollen and tender to the touch. The DIP joint (tip) on my left pinky smarts. The MCP joint (base of finger) on my left middle finger lets me know when I grab the steering wheel. Both wrists hurt when I flex them. My right elbow displays a sharp pain right above the joint. Both knees ache and crunch when moved. My calf muscles feel stretchy and stiff. Both Achilles tendons sting…the right one is bad enough that it was difficult to drive home from work today. The sides of my feet hurt when I press on them. While this day may not typical, one thing is certain…some sort of pain is always present with RA.

Sometimes I find it hard to pinpoint the source or cause of the pain. Yet my analytical mind wants to understand the underlying reasons. Perhaps knowledge can lead to pursuit of the right treatment. But it’s probably more curiosity than anything since my stomach can’t handle oral NSAIDs, I try to avoid taking inflammation-reducing prednisone as much as possible, and I tend to shun narcotic pain relievers for their side effects.

Pain is the body’s way to telling you something is wrong. According to one source,

“[Pain is] an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.”[i]

Pain can be classified as either acute – short term, or chronic – long term.[ii] While some RA induced pain may be acute, it can come and go depending on what joint is being affected, much of it is chronic. Pain sources can be nociceptive – caused from the stimulation of local nerve receptors, or non-nociceptive – caused by problems with the central nervous system.[iii] RA pain is nociceptive since it tends to be localized to various inflamed or damaged tissues. Nociceptive pain can be further divided into somatic – localized to an area resulting from damage to the musculoskeletal system, and visceral – non localized pain.[iv] With somatic pain,

“Patients may describe this as sharp, aching, and/or throbbing pain that is easily localized.” [v]

Pain associated with RA is typically chronic, nociceptive, and somatic. Management for this type of pain is facilitated through the use of analgesics like acetaminophen (Tylenol), non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, or narcotics.[vi]

Another type of pain caused when the nervous system is damaged, called neuropathic pain, may also be associated with RA. [vii] For example, the tingling sensation associated with carpal tunnel syndrome I’ve experienced lately is caused by pressure on, or damage to the median nerve that enters the hand.

With RA, the first and foremost goal is to treat the cause of the pain – inflammation. In this regard, my thought is, “Humira, do your thing so inflammation and pain is reduced.” If not, I’ll be forced to take more drastic actions such as treating the pain symptoms directly. That’s where my treatment options become less available. I guess I’m left with Tylenol, the hottub, topical Voltaren gel (an NSAID), and rest! If that doesn’t work, perhaps I’ll pull out the prednisone tomorrow. I’d prefer to treat the cause directly and not the pain symptoms. In the meantime, I’ll try “taking” some of those peanut M&Ms my daughter brought home for me from back-to-school shopping!

Photo credit: Creative Commons License http://www.flickr.com/photos/azariusrex/

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[i] American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain. 5th ed. Glenview, IL: American Pain Society; 2003.

[ii] http://www.texmed.org/Template.aspx?id=1462

[iii] http://www.ehow.com/about_5393798_somatic-pain-vs-visceral-pain.html

[iv] http://www.painbalance.org/nociceptive-pain-overview-1956304245

[v] http://endoflife.northwestern.edu/pain_management/part_one.cfm

[vi] http://www.medterms.com/script/main/art.asp?articlekey=10933

[vii] http://www.painbalance.org/neuropathic-pain-overview-2772791

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What is an RA Flare?

I can never sit for longer than an hour or so without getting quite stiff. Yesterday, I got up from my chair at church in order to move around a little. As I arose from the chair and put weight on my legs, a sharp pain hit my left knee causing me to almost buckle and fall down. I could barely walk. My right knee has always been the “problem child”…an MRI demonstrated damaged articular cartilage in that joint. But the problems with the left knee were new. On top of this new experience, I noticed an increase in pain and swelling in my fingers, wrists, elbows, and ankles and a decrease in energy. I’ve also experienced tingling in my hands to past few weeks (See earlier post. On a side note, my doctor called me back on Friday evening at 7:00 p.m. – how’s that for service? He didn’t think that the tingling was a side effect of Humira but wanted to see me as soon as possible – I have an appointment tomorrow at noon). I found myself reaching for the prednisone yesterday in an effort to knock down the inflammation and applying Voltaren gel to affected joints. I hadn’t done that in a long time. It became obvious that I’m experiencing a rheumatoid arthritis flare.

The term flare is bantered around routinely. Yet a clear understanding seemed to elude me. Dictionary.com’s medical dictionary gives the following definition for the term flare:

Function: n
1 :  a sudden outburst or worsening of a disease flare s  in rheumatoid arthritis —

Interestingly, this definition is applied to RA. But it doesn’t define what it looks and feels like. I suspect that the vagueness of the term is because of the lack of its use in science and the fact that RA affects people differently. One website describes it as “acute episodes of pain and inflammation.” [i] Scientists routinely use the term “flare” in the research literature but fail to adequately define it. (see this study for example). In one research study, the scientists stated,

“A flare was defined per protocol as an increase of five in active joint count or an increase from zero to three compared with the situation at week 28 (an active joint is swollen or tender on pressure; counting of joint groups in one hand or foot as above)”.[ii]

This definition, while perhaps practical for documenting the efficacy of a particular treatment, doesn’t seem to capture the essence of a flare. In 2009, one group of researchers attempted to develop a standardized definition. Using interviews with 120 rheumatologists and 11 patients, they proposed the following definition:

“(a) flare is any worsening of disease activity that would, if persistent, in most cases lead to initiation or change of therapy; and a flare represents a cluster of symptoms of sufficient duration and intensity to require initiation, change, or increase in therapy.” [iii]

While lacking clarity regarding duration (how long is a flare?), this definition starts to provide meaning with which I can relate. RA patients could fill in the blank on this sentence, “I know I’m having a flare when….”. For me, it’s when I reach for the prednisone and Voltaren gel and feel worn down. That’s a sure sign of a flare. How long will the current flare last? Who knows. But it will pass and I’ll hopefully return to “normal”…as normal as it can be with RA!

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[i] http://www.arthritistoday.org/conditions/rheumatoid-arthritis/self-help-for-ra/arthritis-flare.php

[ii] http://www.cobratherapie.nl/pdf/Boers%20et%20al%20Lancet%201997.pdf

[iii] http://www.jrheum.org/content/36/10/2335.abstract

Photo credit: Creative Commons License http://www.flickr.com/photos/cats_mom/

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Prednisone for RA – My Love/Hate Relationship

As the biological medicine Cimzia slowly stopped working for me over the past couple of months, and I awaited a new treatment regimen from my rheumatologist (it’s Humira and the first injection is tonight!), the symptoms of RA began to flare up including an increase in joint pain, stiffness, butt kicking fatigue, and a general blah feeling. I told my doctor that I was fortunate to get in 3-4 hours of continuous work in a day. It was not uncommon to need a nap or to be in bed by 8:30 at night and sleep 11-12 hours. Some sort of quick, temporary relief was needed until the Humira starts working (notice the statement in the affirmative?). Out came the methylprednisolone or Medrol pack, a powerful anti-inflammatory corticosteroid. As one site indicates, “Methylprednisolone is used to achieve prompt suppression of inflammation.”[i] But I usually avoid taking prednisone due to the numerous side effects. They are powerful drugs and that’s why I call them the “nuclear weapon against RA.” But I was at a point where I felt that I had no choice.

The other day I took a 4mg prednisone pill in the morning. Within an hour I felt much better including increased energy and decreased pain. I went about my work without much problem but noticed that I began to droop in the afternoon. It dawned on me that the relief from the steroid was rather short-lived…about 3-4 hours. So, I reached into my handy bag of pills and took another one. That got me through the work day until I could crash at home. It was clear that prednisone is great at knocking down the inflammation caused by RA. But, the side effects began to rear their ugly head. I began to experience increased hunger, feeling jacked up, difficulty sleeping, and other digestive symptoms which need not be detailed. Today, the prednisone, combined with multiple shots of espresso, is fueling the writing of this blog! But I can’t do this much longer. Humira…please do your thing!

I’m thankful for prednisone when I need it but realize that it is only for the short term. It’s always there in my box of meds just in case.

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[i] http://www.medicinenet.com/methylprednisolone/article.htm

Photo Credit: http://www.flickr.com/photos/betacells/

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Riding the “Carousel”

In a post from last October, the eccentricities of navigating the medical system were described. The same story repeated itself today and is as follows…On Friday afternoon, my rheumatologist prescribes a new biological medication – Humira. I indicated that my insurance would only work through a specialty pharmacy when dealing with biological medications. In the computer, he “sends” it to them.  Within the hour the local pharmacy calls and says that the prescription was received and would need prior authorization from the doctor. Why did the local pharmacy call? This is on Friday at 5:00 p.m. so the weekend puts everything on hold. In the meantime, out come the prednisone steroids to knock down inflammation (along with fun side effects which are not pertinent to this story). A call on Monday to the specialty pharmacy in another state is made and they indicate that they did not receive the prescription and would contact the doctor. A call to the doctor only results in a message being left and no return call. A call to the local pharmacy later in the day is made and the pharmacist states that they do have the script but that she would contact the specialty pharmacy in another state (same company but they never seem to talk) and the doctor to let them know that the script must be sent to the specialty pharmacy. She mumbles something about prior authorization being needed by the doctor before the insurance would approve it. Within the hour I receive a cell phone text message from the local pharmacy indicating that my script was ready for pick up. I called and spoke to a technician. She says that a Humira autoinject pen is ready and would cost $4,000! At this point I wanted to scream! But I calmed down and will wait another day suspecting that the doctor will get it right on Tuesday by faxing the script to the correct pharmacy and getting prior authorization from the insurance company. My insurance company approved Enbrel and Cimzia and I can’t imagine that they would not do the same for Humria (it’s about the same cost). In the end, it will all be good and I’ll get to start the new treatment. In the meantime, I’ll have “fun” riding the carousel.

Photo Credit: http://www.flickr.com/photos/joeshlabotnik/

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The end of TNF Blockers for Me?

Just when it seemed that Cimzia and I were going to have a long term, successful relationship, things have been thrown into doubt. Over the past couple of months, I noticed that the effects of Cimzia began to slowly taper and the days before the next injection that typically saw an increase in symptoms began to increase to weeks. I noticed that after I injected Cimzia late last month that relief did not come at all. My achilles tendons are very tender and the right one is so painful that I can hardly walk when I get up. My fingers are swollen, stiff, tender, and quite painful. Typing has gotten quite difficult the past few weeks. My right knee aches all day. And worst of all, the fatigue caused by RA is rearing its ugly head in ways I haven’t experienced in months. I even found myself refilling a prednisone steroid prescription the other day.

Cimzia is the second tumor necrosis factor (TNF) inhibitor that my doctor prescribed to treat rheumatoid arthritis. I started with Enbrel almost a year ago. The first few months brought great relief but then the effects began tapering. Unfortunately, after almost six months, the story is being repeated with Cimzia.

I’m beginning to wonder if TNF inhibitors aren’t going to work for me. I’m learning that this is not uncommon in the RA world. In a study by researchers in Australia, it was found that patients in clinical trials responded better to biological medications than patients in non-trial settings.[i] Selection bias in clinical trials may be implicated. One set of researchers from the Netherlands noted that 60-70% of people with rheumatoid arthritis fail to respond to tumor necrosis factor (TNF) inhibitors. [ii] Genetics, or “pharmacogenetics” as they call it, may play a role. People with certain forms of genes demonstrated a lack of response to TNF inhibitor drugs. They also noted that patients with high disease activity showed better response to the biological medications. The goal is to develop a method to predict the potential effect, or lack of effect, of TNF inhibitors in individuals. Such systems do not exist yet.

Whatever the cause, it’s back to the rheumatologist to figure out the next weapon from the arsenal that he’ll select. Unfortunately, this story is repeated for many RA sufferers.

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[i] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814094/

[ii] https://openaccess.leidenuniv.nl/bitstream/1887/14497/15/08.pdf

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Cimzia and RA – 4 Months of Treatment

It was interesting travelling during the holidays and needing a Cimzia injection for RA. Not knowing how it would all work out, a quick call to the specialty pharmacy resulted in a pleasant response and a promise to deliver the package of syringes (packed in ice of course) to my in-law’s house more than two thousand miles away in the blizzard conditions of the Midwest. They even included a sharps disposal box!

Snowy Drive, http://www.flickr.com/photos/ozute/

The package couldn’t have come any sooner as the three or so days before the injection, the symptoms of RA began to raise their ugly head. I resorted to take a 4 mg pill of methyprednisolone one morning in a feeble attempt to knock down inflammation. We were in a mad rush out the door to travel to a nearby city to attend a sporting event when the UPS truck navigated the foot of snow and ice to drop off the package. It’s interesting to note the responses from family members when they saw two large syringes. I think it drives home the seriousness of the disease.

Off in the car we jumped with the Cimzia in hand. It needed to warm to room temperature before injecting so 20 minutes down the road I asked my brother-in-law to pull off the highway so I could do the deed. My oldest son, who had never seen me inject before, was quite intrigued with the process. After four times through this routine, it seems to get easier except for those “bleeders” the last two times. I must have hit a vein somewhere.

A daily journal of energy levels, joint problems, and other observations help track conditions (see earlier post). On a scale of 1-10, I’ve been averaging about a 6 for the past 2 ½ months. During that time, I’ve never really dipped below 4 or above 8. I am coming to realize that this is probably success. While there are still ups and downs demonstrated in a variety of ways (including one infection), and RA is always lingering around, hope abounds that perhaps Cimzia is helping. Realizing that RA and treatments can be a moving target, I’ll count my blessings for now.

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