Archive for the ‘Medical Research’ Category


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I am trying very hard to make updating here a regular part of my schedule. It can be tough to do, especially when there is no real news. After all my GI tests came back negative I was a bit at a loss. In general, I have IBS-D (no big surprise there). I am officially on a lactose-free diet for pretty much ever. It has been an easier transition than I expected, although I really miss cheese. I’m still doing daily probiotics and metamucil and take meds for it three times a day. I’ve figured out a few of my triggers. The next step is working with a nutritionist to establish an adapted FODMAP diet but I’m dragging my feet a bit… I’ve been doing better and I’m a little overwhelmed- I may wait until after the medical study I’m participating in wraps up next week.

The study has been going well, even if I’m struggling to meet my self-established goals. The support structure is a huge help, and having more tools in my treatment repertoire is a good thing. I saw my rheumatologist today and have a script for a new TENS unit (since my old one bit the dust). I’ll be swinging by a medical supply store soon- I don’t use it often, but it is really, really helpful to have when I need it. I have also been reminded how useful icing is. I really don’t like the cold (it makes my everything ache), but it really does help certain kinds of pain. The PT for the study also lined me up with some good exercises for my knee (I twisted it two weeks ago and I’m still getting back up to speed).

I’m still using the FitBit and will write a formal review when the study is over. I haven’t been doing great with tracking my food, but being able to record and evaluate my sleep patterns is really useful (I just have to remember to turn the sleep tracker setting on and off- I sometimes have trouble getting it to switch programs).  I haven’t lost much weight, but I haven’t gained any and can tighten my belt a notch and slip my wedding ring off easily again (when my hands aren’t swollen), which are both welcome progress markers.  :}

Hubby and I talked it over and decided that this isn’t a good time to buy a new house and we’re putting the hunt on hold. I am disappointed but also relieved- we’ll still be buying a house and moving eventually, but the timing just isn’t right at the moment. Hubby and the cats are keeping me sane, and I’m looking forward to the Independence Day weekend (even if I know my sleep will suck thanks to fireworks every night). I am still enjoying learning how to care for my betta fish (named Fish, because, seriously, I can NOT think of a name for him). After a bumpy start he’s doing well and we love giving him bloodworm treats- he’s so FIERCE!

Back to the subject of this post- my doctor is moving to a new location. I really like working with her, but the new office is not at all convenient, so I’ll be staying with my current practice and have been assigned to their new rheumatologist. I’ll really miss working with her and I’m a little sad but completely understand (her new practice will be closer to home for her). Overall, my pain is down and while I’m still frequently tired, I’m not fatigued (which is a huge improvement). My bloodwork still isn’t where we would like it to be, but at this point I’d be going back on oral chemo and I’m really hoping to not do that. I have three months before I meet with the new doc and we’ll she how my rates are then. *fingers crossed*

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Originally posted http://www.mayoclinic.org/news2012-rst/6933.html Monday, June 11, 2012

The billions of bugs in our guts have a newfound role: regulating the immune system and related autoimmune diseases such as rheumatoid arthritis, according to researchers at Mayo Clinic and the University of Illinois at Urbana-Champaign.

Larger-than-normal populations of specific gut bacteria may trigger the development of diseases like rheumatoid arthritis and possibly fuel disease progression in people genetically predisposed to this crippling and confounding condition, say the researchers, who are participating in the Mayo Illinois Alliance for Technology Based Healthcare.

The study is published in the April 2012 issue of PloS ONE.

“A lot of people suspected that gut flora played a role in rheumatoid arthritis, but no one had been able to prove it because they couldn’t say which came first — the bacteria or the genes,” says senior author Veena Taneja, Ph.D., a Mayo Clinic immunologist. “Using genomic sequencing technologies, we have been able to show the gut microbiome may be used as a biomarker for predisposition.”

The roughly 10 trillion cells that make up the human body have neighbors: mostly bacteria that often help, training the immune system and aiding in digestion, for example. The bacteria in the intestines, in addition to a relatively small number of other microorganisms (the gut microbiome), outnumber human cells 10-to-1.

Researchers found that hormones and changes related to aging may further modulate the gut immune system and exacerbate inflammatory conditions in genetically susceptible individuals.

Nearly 1 percent of the world’s population has rheumatoid arthritis, a disease in which the immune system attacks tissues, inflaming joints and sometimes leading to deadly complications such as heart disease. Other diseases with suspected gut bacterial ties include type I diabetes and multiple sclerosis.

Researchers with the Mayo Illinois Alliance for Technology Based Healthcare say that identifying new biomarkers in intestinal microbial populations and maintaining a balance in gut bacteria could help physicians stop rheumatoid arthritis before it starts.

“This study is an important advance in our understanding of the immune system disturbances associated with rheumatoid arthritis. While we do not yet know what the causes of this disease are, this study provides important insights into the immune system and its relationship to bacteria of the gut, and how these factors may affect people with genetic susceptibilities to disease,” says Eric Matteson, M.D., chairman of rheumatology at Mayo Clinic, who was not a study author.

Dr. Taneja and her team genetically engineered mice with the human gene HLA-DRB1*0401, a strong indicator of predisposition to rheumatoid arthritis. A set of control mice were engineered with a different variant of the DRB1 gene, known to promote resistance to rheumatoid arthritis. Researchers used these mice to compare their immune responses to different bacteria and the effect on rheumatoid arthritis.

“The gut is the largest immune organ in the body,” says co-author Bryan White, Ph.D., director of the University of Illinois’ Microbiome Program in the Division of Biomedical Sciences and a member of the Institute for Genomic Biology. “Because it’s presented with multiple insults daily through the introduction of new bacteria, food sources and foreign antigens, the gut is continually teasing out what’s good and bad.”

The gut has several ways to do this, including the mucosal barrier that prevents organisms — even commensal or “good” bacteria — from crossing the lumen of the gut into the human body. However, when commensal bacteria breach this barrier, they can trigger autoimmune responses. The body recognizes them as out of place, and in some way this triggers the body to attack itself, he says.

These mice mimic human gender trends in rheumatoid arthritis, in that females were about three times as likely to generate autoimmune responses and contract the disease. Researchers believe these “humanized” mice could shed light on why women and other demographic groups are more vulnerable to autoimmune disorders and help guide development of new future therapies.

“The next step for us is to show if bugs in the gut can be manipulated to change the course of disease,” Dr. Taneja says.

The study was funded by the Mayo-Illinois Alliance for Technology Based Healthcare and a grant from the U.S. Department of Defense.

Co-authors include Andres Gomez; Carl Yeoman, Ph.D.; and Margret Berg Miller, Ph.D., all of University of Illinois; David Luckey; Eric Marietta, Ph.D.; and Joseph Murray, M.D., all of Mayo Clinic.

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Tofacitinib is part of an up-and-coming new class of disease-modifying drugs called JAK inhibitors.

A little about what that means:

Tofacitinib is part of a new class of drugs known as “JAK inhibitors” that block Janus-associated kinase, or JAK, pathways, which are involved in the body’s immune response. JAK inhibitors are expected to compete for sales with biologic agents such as adalimumab, or Humira, and etanercept, or Enbrel, which revolutionized the treatment of RA and other types of inflammatory arthritis when they hit the marketplace almost 15 years ago. Unlike biologics, which are made from large and complex engineered proteins and taken by injection or infusion, JAK inhibitors are small-molecule medications that would be taken orally, once or twice a day.

(No, I have no idea how to pronounce Tofacitinib.)

I’m very interested in this, not only because it’s a new approach to RA treatment, but also since I’m getting ready for (probably yet another change in my RA treatment. I am hoping, fervently, to avoid going back on chemo, so a biologic is a strong contender. I’ve come to the conclusion, however, that no matter how much research I do I only understand about 80% of drug information (I can read the side effects just fine however- brrr). I also like the idea of another oral dose rather than an injection- I’ve managed to avoid them so far but I’m running low on options.

One way or the other, this is a huge step forward in RA treatment, and it’s exciting to see a new approach becoming available.

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First, another promising report passed along by Toni Bernhard: Rare Immune Cells Could Hold Key to Treating Immune Disorders

This study has a more concrete conclusion than I’ve seen in a while. Autoimmune diseases are chronically under-researched, so it’s encouraging and refreshing to hear of new research being conducted out there, and especially research with hopeful theories!

I also brought one of my favourite brands to task recently; here is the e-mail I sent them:

Hello- I recently purchased***** Antiseptic Mouth Rinse Green Mint with the easy-pour bottle. I like ***** brand mouthwash and noticed that it had a new style “cup” for a cap. Unfortunately, this new cap is VERY difficult to open if you have arthritis in your hands, as I do. I struggle with the cap daily, and some days can’t open it at all. I often need my husband to open it for me, and now leave the cap loose because it is such a problem. Please consider accessibility issues when designing your new products- I am sure you have many other faithful customers like myself who are also having issues with the new design. Thanks for your attention, and if you have any questions please feel free to contact me.

I requested follow-up on the online form, so I’m hoping for a response. I don’t expect any immediate changes, but if we don’t let them know that there’s a problem, they can’t improve it.

This is one of those grey areas where my personal Accessibility Advocacy outside of work overlaps with my job. I just had an accessibility meeting yesterday for work and provided feedback on international research into accessibility today. Living it really does make a difference in how I view the impact of what I do.

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I am still reeling a bit from the death of Adrienne Rich- it seems that many of my favourite poets are passing and I’m feeling sad and nostalgic for a time when poetry was more present in my life. Despite the sadness of her death due to complications from RA, there is some hopeful news out there as well:

(I want to take a moment here to credit Rheumatoid Arthritis Guy, who always manages to find these announcements a day or two before I do- he’s a wonderful resource!)

Clinical Pharmacology & Therapeutics: Current Understanding Of Rheumatoid Arthritis Therapy

“Progress in understanding the cellular and molecular mechanisms of rheumatoid arthritis (RA), together with the availability of new therapies, has changed the way we think about RA. The paradigm shift in RA therapy has been from controlling symptoms to controlling the disease process with the abrogation of inflammation. Challenges that are still unresolved include the issues in disease prevention, treatment specificity to restore tolerance, approaches to facilitate tissue repair, and treatment optimization to fit the individual patient’s disease phenotype and comorbidity context. This review summarizes the pathogenesis-related rationales for the current therapeutic strategies in RA and for emerging therapies and potential approaches to restoring immune tolerance in RA.”

Read More: http://www.nature.com/clpt/journal/v91/n4/full/clpt2011325a.html

I’ve also spoken a little in the past on my feelings regarding remission- how feasible it is as a goal of treatment. This study seems to both support my misgivings and also provide hope to better understand the viability of remission as a realistic target via research: Sustained rheumatoid arthritis remission is uncommon in clinical practice

Abstract (provisional)


Remission is an important goal of therapy in rheumatoid arthritis (RA), but data on duration of remission are lacking. Our objective was to describe the duration of remission in RA, assessed by different criteria.

In personal news, tentative diagnosis for my foot is Morton’s neuroma. I have an x-ray scheduled this afternoon to make sure that there isn’t a hairline fracture in there somewhere and an appointment with a podiatrist on Tuesday (woo! a new specialist! I think chronic patients should get to swap business cards like baseball cards- gotta get the whole set!).

My appointment at my PCP was not one of my better ones- the NP in training had a little trouble with the pressure cuff and I have bruising. I felt accused that poor shoe choices may have caused this problem (toes too narrow on my everyday walking shoes) despite the fact that I always thought that I choose shoes very sensibly- no heels and I buy wide shoes because I have wide feet. I was wearing my brand-new shoes to replace the broken ones (which admittedly may have aggravated this situation) and was told to keep wearing the old shoes. I had to explain several times that they were physically broken and probably got a good choice. I was then questioned about the quality of my trainers and whether they were fitted by a trained person. “Um, the person at the shoe store helped me choose walking shoes”. What more does she want from me? We can’t all spend hundreds of dollars on super-shoes. Also, apparently flip-flops are The Devil- the reaction when I even mentioned them was frightening. So I am wearing trainers for a few days tied very loosely because pressure on the top of my foot is painful. I’m very frustrated about this and hope that I don’t get a second dose from the podiatrist. Arrrrgh… but enough about that.

In the meantime, in addition to pampering my feet I have to soak my foot in ice water a few times a day to keep the swelling down (which is terribly painful) and I’m on a steroid pack. I’ve managed to avoid them thus far but can’t make that claim any longer. Since I didn’t get the prescription until the end of the day I had to take the whole  first-day dose all at once (six pills). I was rather wired and very, very warm for a few hours there. I then used a heating pad and muscle relaxant for my calf muscles just before bed. Happily, while I am still in pain I am not hobbling and exhausted today, so this is an enormous step in the right direction (pun intended).

I also received a wonderful new resource from the doctor and wanted to pass it along: http://familydoctor.org/familydoctor/en.html Since it is operated by the American Academy of Family Physicians (AAFP) it is a reliable source, and I am always happy to have more tools of information in my tool box. I am trying to better organise my links on the side panels by breaking out resources vs. blogs, but many of them blur the lines and I want to list them in both places!

Tomorrow begins the WEGO Health Activist Writer’s Month Challenge for April- wish me luck and check in every day!

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