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I’ve been on seven – count them – seven different biologic medicines since being diagnosed with rheumatoid arthritis. I started with several anti-TNF biologics and then moved to several others even bouncing back to try another anti-TNF before eventually trying Rituxan. I’ve self-injected with auto-inject pens, self-injected with needles, and seems like I’ve had every type of infusion possible. This is probably something of a record although similar stories emerge on discussion boards from time to time. With some of the biologics, I would respond for a period of time and then it would stop working. With others, there was never a response. With yet others, there would be some adverse side-effect causing cessation. This is not all to unusual as it is widely know in the rheumatology community that upwards of 30% of RA patients do not positively respond to anti-TNF biologic medicines.

Read the rest at … http://rheumatoidarthritis.net/living/switching-ra-medicines-dont-wait-long-try-many/

RA just isn’t Hip

I’m still in the midst of recovering from cervical fusion surgery on May 15 and am currently completing physical therapy. The process seems to be going well, pain and numbness is almost completely gone, and I’m slowly regaining muscle strength. After dealing with it for over 8 months, the neck and associated parts finally feels much better. But RA is never silent and has a way of rearing its ugly head just when you think things are calm. Sure, there is always the ongoing “background noise” of RA – fatigue, joint and muscle pain, finger swelling and pain, joint locking, and the persistent ankle pain after having three surgeries. But now the left hip is begging – no screaming – for attention.

Hip problems became apparent almost two years ago when I began getting steroid injections for trochanteric bursitis from my rheumatologist. Bursae are sac-like structures that are found in some joints and aid in providing friction reduction.[1] I had a bursa removed as part of an ankle surgery. The trochanteric bursa is on the outside of the hip and is commonly involved in RA.[2]

While my neck was healing, the left hip progressively grew worse. Sitting for any length of time was impossible, getting in and out of a chair and car was difficult, sleeping on the left side was not feasible, and the left side was favored while walking. At a recent rheumatology appointment, a fourth cortisone steroid injection was given into the trochanteric bursa. But the injection brought no relief. My rheumatologist referred me to an orthopedic specialist.

The orthopedic surgeon examined x-rays and noted that the space in the ball and socket joint, while somewhat reduced, looked fine. There was no bone erosion perceived. We spent some time discussing my earlier problems with the trochanteric bursa, the multiple steroid injections, and my current symptoms of groin and buttock pain. He then laid me down on my back and began to examine my hip movement through a series of tests. I couldn’t lift my leg off the table and extreme pain was felt when he manipulated it in various ways. After the physical exam his entire line of inquiry changed from the more external trochanteric bursa to focusing on tissues around the joint itself. He immediately began to suspect a labral tear. The labrum is cartilage that surrounds the hip joint.[3] But a physical exam and x-ray cannot directly pinpoint what’s really going on so an MRI is needed. A traditional MRI can’t always detect soft tissue in the complex hip joint so an arthrogram is added. Before the MRI, a radiologist injects a combination of fluid, steroid, and a contrast into the hip joint under the guidance of an x-ray. After the injection, you go directly to the MRI machine. The steroid can also provide a therapeutic purpose in reducing inflammation and pain. I am scheduled for an MR arthrogram tomorrow and hopefully it will help solve the mystery.

In addition to the more traditional bone erosion, I have a history of developing soft tissue damage to the musculoskeletal system from RA. This episode with the hip seems to be following that story.

[1] http://orthoinfo.aaos.org/topic.cfm?topic=a00409

[2] https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Tendinitis_and_Bursitis/

[3] http://www.hss.edu/condition-list_labral-tears-hip.asp#.U_zH9WRDvA4

The Ice Bucket Challenge for ALS is all the rage right now. Hardly a day goes by that I don’t see a post on my personal Facebook page with someone pouring ice over his or her head and daring someone else to do it. It seems that every celebrity is getting on board ranging from Bill Gates to Lady Gaga. To date, over $22 million has been raised by this strategy.[1] This got me thinking about why RA and related autoimmune diseases can’t get this sort of public attention.

Amyotrophic lateral sclerosis (ALS) is also known as Lou Gehrig’s Disease after the famous baseball player. According to the ALS Association, 5,600 people are diagnosed with ALS each year in the United States and it is estimated that 30,000 some people currently live with the disease.[2] It is true that half of all people diagnosed with ALS will die within a few years and it is a most devastating disease.

However, the impact of RA on Americans is vast compared to many other diseases. Over 1.5 million Americans suffer from rheumatoid arthritis and upwards of 23 million suffer from an autoimmune disease.[3] Arthritis is the leading cause of disability and work limitations in the United States. The financial impact on the workplace and personal lives of those affected is close to 100 billion dollars annually. There are over 10,000 arthritis related deaths every year. [4] The direct healthcare costs of autoimmune diseases are estimated at $100 billion annually compared to $57 billion annual for cancer.[5] Autoimmune diseases receive much less research funding annually than cancer – about $800 million dollars in research funding every year compared to all cancers funding at $7 billion.[6]

There are many diseases worthy of public attention and research funding. And ALS is certainly one of those. But I am frustrated by the lack of public attention and funding for autoimmune diseases in general and RA specifically. Can’t someone come up with a promotion for RA that will grab the public’s attention?

[1] http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-081914.html

[2] http://www.alsa.org/about-als/who-gets-als.html

[3] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[4] http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm

[5] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[6] http://livingwithra.wordpress.com/2013/01/31/research-funding-priorities-for-rheumatoid-arthritis/

Hardly a day goes by on the rheumatoid arthritis Facebook site that a person doesn’t mention their persistent battle with fatigue. It’s one of the most frustrating symptoms of RA and there’s no treatment that directly affects it.

Fatigue is a common problem seen is almost all autoimmune diseases.[1] Your body feels completely wiped out, energy levels are low, it’s hard to move, and your cognitive function is poor.

Read the rest of the article at http://rheumatoidarthritis.net/living/ra-fatigue-complex-poorly-understood/

In a recent post on the rheumatoidarthritis.net Facebook page, a person mentioned that they had been treated for RA with a long-term antibiotic. This fosters an interesting, oft-neglected, scantily researched, and misunderstood treatment option. It is grounded in the idea that bacteria are a causative agent of rheumatoid arthritis. In an earlier post, I discussed the three currently accepted hypothesized causes of RA – 1. an environmental trigger, 2. a genetic susceptibility, and 3. a so-called “leaky gut”. The environmental trigger could apply to the notion that bacteria actually cause RA.

Read the rest of the story at…http://rheumatoidarthritis.net/living/antibiotics-treatment-ra/

About the time I first ventured into a rheumatology clinic after being referred by my general practitioner, I had been battling a nasty case of hives for the previous year or so. The itching drove me crazy at times and I took an over-the-counter antihistamine to control it. My medical record still lists urticaria, the medical term for hives, as one of my “conditions”. The referral was based on traditional RA symptoms but when my rheumatologist learned about the hives, he mentioned that it was probably related to RA since it all involved the immune system. In a previous post, I outlined how RA can impact parts of the body other than joints and there are several skin issues that are related to rheumatoid arthritis.

Read more at…http://rheumatoidarthritis.net/living/skin-issues-associated-ra/

If you have RA you should consider participating in research on the disease. The National Data Bank for Rheumatic Diseases (NDB) is the largest patient-reported research data bank for rheumatic disorders in the United States. As a RA patient, you can participate in their ongoing studies about the impact of the disease. They give reports at conferences and publish results in peer-reviewed journals. Participation is easy and can be done online. They send a reminder email to complete the survey on a regular basis and they provide a copy of your personal results. Results are confidential. Why should you participate? According to the NDB frequently asked questions website,

The primary reason people give for NDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. NDB research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.”

Please sign up today…http://www.arthritis-research.org/join-research/joining-ndb-research-rheumatoid-arthritis

 

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