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Posts Tagged ‘side effects’

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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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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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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When first diagnosed with RA over five years ago, I was prescribed oral methotrexate (MTX). After a month of taking the pills, I felt terrible and was basically non-functional. It felt like a truck ran over me as I had no energy, felt sick at my stomach non-stop, and had headaches. The RA symptoms were bad enough but this just added insult to injury. My rheumatologist finally told me that I clearly could not tolerate the drug and to stop taking it. The side effects subsided within a few weeks.

Several years later, and with a different rheumatologist, I asked about taking MTX injections because I was desperately trying to find a treatment combination that worked. It was recommended to add MTX with the biological medicines I was taking as the combination of the two typically produces better results. I started take methotrexate via weekly self-injection and found that the nausea side effects were much less than with oral pills. I seemed to tolerate the MTX much better when injecting it and adding both folic acid and leucovorin. I rarely felt nausea and did not loose any hair.

But an increase in migraine headaches over the past year coincided with the time I started taking MTX. While not one of the more commonly reported side effects like nausea or hair loss, headaches can come from taking MTX.[i] [ii] As my neurologist stated, the causes of the migraines are likely based on multiple factors including genetics, my fight with RA, and the medicines I take. During the past few months when the headaches increased in number, I completely stopped taking methotrexate in an effort to eliminate any possible triggers. We’ve been able to reduce the number of migraines through the use of gabapentin, a drug used for neuropathic pain, and botox injections (no, I don’t look any younger!). My rheumatologist suggested that I start retaking methotrexate by beginning with low doses initially and then increase back up to the dose I was taking before. I waited until I had been headache free for two weeks and then injected MTX. Within 48 hours I began to get migraines and fought off four bad headaches over the next five days. While it’s hard to determine direct cause and effect, this was enough for me to wonder if MTX was indeed a migraine trigger. I did not inject MTX the next week and did not have any bad migraines. I contacted my rheumy and she suggested I just stop MTX altogether. The good news is that during this time, Rituxan infusions that I started last September were starting to work at controlling my RA and this was during the time I had stopped taking MTX.

So for the time being, I’ll just stick with Rituxan as my main RA treatment. And I’ll be sitting in the infusion center this Wednesday starting my second series of doses.

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It’s December 23rd and most people are likely spending the day baking Christmas goodies, purchasing that last minute gift, wrapping presents, picking up family at the airport, traveling, or engaged in some other holiday related activity. Not me as I’m sitting in the infusion clinic. I know the place and nurses very well since I come here for RA infusions. But today I’m not here to receive Rituxan which is my current RA biological medicine. I’m here because 11 out of the last 13 days have been spent dealing with chronic migraine headaches. Everyday there’s a low grade headache lingering all day long and then a migraine comes  on rapidly usually in the early morning. I have to quickly take an abortive medicine like Imitrex and lay down in a quiet place to rest. But after two weeks of this, my neurologist wanted me to come into the clinic for an infusion of a cocktail of dihydroergotamine (DHE), phenergan (an antihistamine), and decadron (a corticosteroid) in order to put a stop to the migraine cycle. I had this same cocktail last year when taking Remicade and it works very well. I also started on a strong preventative medicine called topiramate (Topomax) about two weeks ago and that can take up to one month to begin working.

My neurologist believes that I already had a genetic propensity for migraines as I used to get them several times a year. But since dealing with RA, they seem to be rearing their ugly head more often and he believes that the combination of dealing with RA and the drugs I’m taking to combat the RA are contributing to the increase in migraines. I first noticed headaches when taking Humira years ago and then they came with a vengeance last year when taking Remicade. This lends some evidence that the RA medications may be a contributing factor in my case. Humira and Remicade are in the same class of RA drugs – TNF  blockers – and both list headaches as a possible side effect. But I’m currently on Rituxan which is not a TNF blocker and acts on a completely different part of the biological process involved in RA. Methotrexate also lists headache as a possible side effect. I’ve temporarily stopped injecting methotrexate until we get these migraines under control. This experience makes me question long term RA treatment but that discussion will wait until later in January when I see my Rheumatologist. In the meantime, shaking the headaches is the short term goal.

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It is my thesis that the symptoms of rheumatoid arthritis, it’s real impact on people, and the lack of a cure and highly effective treatments is not being accurately portrayed in various forms of the press and media.

Pharmaceutical companies, primarily those with biological treatments for RA, have print and TV ads that show happy, active people easily engaged in physical activities such as cooking in the kitchen, playing soccer with children, and living carefree lifestyles. For example, watch this recent TV ad for Humira. The Enbrel ads featuring golf professional Phil Mickelson, which he takes for psoriatic arthritis (an autoimmune relative of RA), make it sound like he’s licked the disease and is better than ever. One review of these ads points out the caution that must be taken from this story. Nevermind the potential paid spokesperson issues involved in such ads. A recent article in USA Today portrayed a person with RA who is taking a current biological treatment and lives a very active physical lifestyle. The author used language that made it sound like the person was cured. The article received scathing reviews from numerous groups and people (read the posted comments) and the story was slightly modified although the main misrepresentations remain. A recent issue of the magazine Arthritis Today published by the large patient advocacy non-profit Arthritis Foundation features a cover story where a person with RA competes professionally as a triathlete. Upon seeing and reading such portrayals as those listed above, the general public would be prone to believe that rheumatoid arthritis is not that big of a deal.

It may be true that some RA patients do quite well due to low levels of disease activity, natural remission (a rarity), or symptoms well controlled by treatments. Biological treatments developed over the past 15-20 years resulted in many patients doing well and with rheumatologists indicating that they’ve seen a dramatic change in their practices. But the reality for a large proportion of RA patients is that they suffer everyday with uncontrolled or poorly controlled symptoms and do not adequately respond to treatment combinations. Up to 40% of RA patients are not helped by RA treatments or cannot continue treatments due to side effects (see this study by Rubbert-Roth and Finckh, 2009). One recent study reported that higher priced biologic drugs have had the same impact on time lost at work as older DMARD treatments. A meta-analysis (a statistical analysis of many studies) by Callhoff, et al (2013) demonstrated that the use of biologics help RA patients in physical functioning but that improvement was only seen in 50% of patients.

Disease remission is the goal of rheumatologists and advances in treatments help towards this goal (see this article by Collins in 2012). The currently accepted standard for remission as reported in Felson, et. al, 2011, p 581 is…

At any time point, patient must satisfy all of the following:
Tender joint count - equal or less than 1
Swollen joint count – equal or less than1
C-reactive protein – equal or less than 1 mg/dl
Patient global assessment – equal or less than 1 (on a 0–10 scale)

These are stringent criteria and it would be difficult for many RA patients to meet this even on biological treatments. In 2011, Sokka et al stated that remission “…is not a common phenomenon in real life due to many hurdles.” And the rate of remission depends on the criteria used (Mäkinen, et al., 2005) with rates of remission ranging from 17-55% with only 13% reported as obtaining remission on all three sets of standards used. Many clinical trials are considered a success and the drug receives governmental approval for public use if the patients met older criteria oftentimes reported as ACR 20, ACR 50, or ACR 70 meaning that the patient reported a 20%, 50%, or 70% improvement in symptoms. In most clinical trails, the majority of patients don’t meet the ACR 70 (see this package insert which reports clinical study results). This is not remission, only an improvement in symptoms. It stands to reason that hundreds of thousands of RA patients in the U.S. alone do not meet “remission” criteria and that does not include the untold millions throughout the world.

The reality of unfettered disease activity is clearly evident in the RA patient online community. Read any of the discussion forums at the popular sites listed below and the norm will be discussions of patient suffering, unrelenting symptoms, lack of treatment efficacy, and side effects preventing them from taking prescribed treatments.

One could argue that these communities may be populated primarily by patients with uncontrolled disease activity and who are seeking help and relief. Even if this is the case, there are still tens or hundreds of thousands of patients who visit and post on these sites.

Read some of the most popular blogs written by people with RA and it will be clear RA is a constant companion that has had a great impact on life. Lene at the Seated View is in a wheel chair due to permanent joint damage and has been fighting RA symptoms for years. Carla at Carla’s Corner just had a knee replacement and this is not her first joint surgery due to RA. Mariah at her blog From This Point. Forward is changing medications once again due to unrelenting disease activity. All of these bloggers are taking some of the most current and sophisticated treatments for RA. These blogs and others (see this list) represent the patient voice of how the disease is really affecting their lives.

Could there be some people with rheumatoid arthritis who are in remission and leading physically active lives? Should these cases be celebrated? Can the stories of their lives be used to bring hope? The answer to all of these questions is a resounding yes. But it must be clear to medical professionals, pharmaceutical companies, government health funding agencies, researchers, non-profit agencies, advocacy groups, and the general public that such cases are the exception and not the norm. The vast majority of RA patients never reach clinical remission. Large portions of RA patients are not helped by the current RA treatments on the market or suffer side effects preventing them from continuing treatment.

Some organizations and individuals in the media may have underlying promotional and marketing purposes that drive their messages. But all I ask for is a balanced and realistic portrayal with integrity (see the journalistic code of ethics) in popular press and media. Anything other than that will only lead to misunderstanding, underrepresentation, and lack of advocacy for a disease that has no cure and whose current line of treatments that are not completely effective.

Postscript: Scott S commented on this article and left a wonderful quote from now deceased Deb Butterfield from her post titled Perceptions vs. Reality in Insulin-Free Times – “By showing the world only the happy face, and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes.”

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PrednisoneIt 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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