Tips for family and friends for people living with rheumatoid arthritis

March 15, 2017

Last week I was listening to one of my patients describe their condition in a deeply emotional and revealing way. He honestly caught me off guard.

He said, that he woke up one day, and felt like a blob. Like a being without joints, without tendons, ligaments or structure. He could not walk or move. He did not feel human anymore.

He was describing Part I of Franz Kafka’s seminal work, The Metamorphosis. For those who have not read this novella, The Metamorphosis is the story of Gregor, a travelling salesman, who wakes one morning to discover that he has transformed into an insect-like being. There is no rhyme or reason for his transformation. It did not happen because he was a bad person or because of something he did. It simply just happened. The story deals with his attempts to adjust to his new physical state and his attempts to cling onto his humanity. It also deals with the transforming relationships he has with various members of his family. First how some show empathy but then quickly this empathy transforms into a sense burden and then repulsion.

Sound familiar?

When you think about it, it’s kind of depressing, especially for those who suffer from chronic diseases such as rheumatoid arthritis. In certain cases, it’s a reflection of reality. One wakes up one day and learns that their body will not let them to do what they used to do. In the case of rheumatoid arthritis, you didn’t do anything to cause it. It just happened. It’s not like you were smoking 3 packs of cigarettes a day for 20 years and then you get diagnosed with emphysema. That’s called playing with fire. With RA, it just happens.

So now you find yourself not being able to do what you used to do: do your job, support your family, play with your kids. It’s not because of a lack of will, your body simply won’t let you… not that you should give up:) Now you become a burden to your family. Your relationships change.

Unlike Kafka, I personally refuse to believe that these relationships will inevitably sour. Healthy relationships with your loved ones can you grow healthier physically, emotionally, and psychologically.

The following are 8 tips to help metamorphose relationships into healthy and supportive ones. Please share with family and friends!

Learn as much as you can about your loved ones disease

Knowledge is power. It’s easier to have empathy when you have a sense of what’s going on and also what to expect.

But don’t assume you know everything. You don’t.

No one likes a know-it all. Don’t assume that you know what your loved one is going through or how they feel. You can’t learn that in a textbook or from an article. Be supportive.

Be a good listener

Sometimes people simply need vent. Listen for cues.

Be adaptable

Life is going to change whether you like it or not. There’s going to be good days and there’s going to be bad days. Being rigid about your expectations is not going to get you anywhere. Be flexible.

Don’t be overprotective

Find balance. Although you want to help your loved one as much as you can, you also don’t want to strip them of their independence and by being overprotective.

Open communication

Be open about your emotions and thoughts. A healthy relationship is one free of passive aggressiveness.

Join a support group

There are many support groups out there. Let me tell you, I’ve been there. Not for RA though. All of a sudden the person you love and depend on, gets diagnosed with this terrible disease. And EVERYTHING changes. There’s nothing worse than the deep sense of loneliness that comes along. Support groups can help overcome the isolation. Find a support group near you!

Unconditional love

Whatever life throws at us, we will deal with it together. I promise not to scream at you because I’m having a bad day. I promise not to blame you for the money problems we have now. I love you, I will support, and advocate for you no matter what conditions. This is unconditional love.

I hope this has been helpful. Please leave any comments below. I’m interested in hearing your thoughts and experiences.

Overcoming Inflammation

How to read and analyze medical research

January 16, 2017

Reading medical journal articles is not considered light reading. They’re written in a funny sort of way, they have a lot of statistics, and they tend to be devoid of “normal English”. Sometimes I feel they were actually written for robots as opposed to human beings. The thing is, evidence-based medicine offers us the most unbiased scientific information out there. It’s important to note that not all research is unbiased. A lot of it is! Knowing how to read, understand, and analyze primary scientific research is paramount. It’s the difference between getting a story from a friend of a friend, as opposed to actually being in the story.

This week I’d like to invite you to go through the process I use to read through a medical journal so that when someone tells you, “research says”, you can read, understand, and analyze that actual data yourself.

Rheumatoid Arthritis

One of the most common conditions encountered in a rheumatology practice is rheumatoid arthritis (RA). This is not your typical type of arthritis. RA is a systemic autoimmune disease that tends to first attack small joints in the hands and feet. If left untreated, it can spread to other joints, other organs, and can lead to permanent joint destruction.

Rheumatoid arthritis is treated with medications collectively called, disease-modifying agents (DMARDs). These are medications that change the way the immune system works. Fight fire with fire. Simple right? Problem is, most of these medications have scary potential side effects. They’re the ones with the commercials ending with, “risks may include nausea, vomiting, hair loss… oh yes and death. Please consult your physician for further information”. Oh yes, I totally want that medication. Don’t get me wrong, these medications have GREATLY improved the health and lives of people suffering from autoimmune diseases.

Increasingly, people have been interested in complementing their prescribed treatment with more natural interventions. Notice, I said complementing, not replacing. The CDC actually looked into this and did what they always do… crunch numbers. They wanted to know what percentage of people suffering from musculoskeletal pain disorders use complementary health approaches. What they found was that 54.5% of people have a musculoskeletal pain disorder in the US and of these, 24.7% use natural products. Now, RA only accounts for a small fraction of people suffering from joint diseases but other reports have shown a similar trend in RA sufferers.

So without further adieu…

A multicenter, randomized, double-blind, placebo-controlled trial evaluating the efficacy and safety of Tong Luo Hua Shi capsule, a modernized Tibetan medicine, in patients with rheumatoid arthritis

Let me put this out there, doctors like to be really descriptive and unoriginal when choosing a title for their article. So sorry for the never-ending header.

Tong luo hua shi is a modern herbal supplement akin to wu-wei-gan-lu, an herb that has been used in Chinese medicine to treat RA for hundreds of years. Chinese researchers conducted a multicenter, randomized, double-blind, placebo-controlled, dose-finding trial with tong luo hua shi (TLHS) in people suffering from RA. This is the type of info you want: multicenter, randomized, double-blind, and you want the study drug to be compared to a placebo. The researchers are basically trying to decrease bias.

They studied 236 people with RA according to guidelines set by the American College of Rheumatology. People were excluded if they had another autoimmune conditions, if their RA was very advanced, if they had another severe disease like advanced kidney disease, if they were pregnant – duh, or if they had a psychological disease. Basically, you want all your participants to be the same, compare apples with apples, and you want the study to be safe.

The participants had to come off their inflammatory meds like ibuprofen but they were allowed to stay on a stable dose of steroids and their DMARD.

The participants were then randomized to the following groups: TLHS 4.8 grams/daily, TLHS 3.6 grams/daily, TLHS 2.4 grams/daily, and placebo. It’s important to have a placebo group. Sometimes the placebo can be a fake pill and more often researchers use a medication that is considered standard of care. When reading an article, you want to make sure that both the researchers and the participants were blinded. This means that the people doing the research and the people receiving the intervention, did not know who was getting what. This reduces a considerable amount of bias.

The study lasted 8 weeks. If they were doing terribly 2 weeks into the study, the treating physician was allowed to prescribe diclofenac (i.e., a powerful anti-inflammatory) and/or leflunomide (i.e., a DMARD). The baseline characteristics of the participants were similar across all four treatment groups.

This is the beauty of randomization. It’s essential for treatment groups to be similar. For example, if the study group had a lot more women, then you could blame whatever outcome because of sex instead of the actual intervention.

What they found was that people who received TLHS 4.8 grams daily did better compared to all groups. Moreover, the TLHS groups tended to use less diclofenac. Importantly, there weren’t any serious side effects. Some insomnia, gastrointestinal intolerance, a minor liver lesion, and a participant in the placebo group experienced some minor liver dysfunction. Then again, a lot of these people were being exposed to diclofenac and leflunomide, both of which are known to cause liver problems. So really, who knows what caused what.

Study Evaluation

Study findings

TLHS seems to be effective in relieving symptoms caused by rheumatoid arthritis, especially at higher doses.
TLHS appears to be safe up to a dose of 4.6 grams daily. More than that, who knows?
Pregnancy safety data is not available.

Limitations

Participants were allowed to stay on their prior existing DMARD. They never said, which ones exactly. Were the people receiving the higher dose of TLHS, also receiving a more powerful DMARD than the people who received placebo? I can see that confusing the picture.
The sample size was rather small.
The study lasted only 8 weeks. This is VERY short. RA studies typically last 30+ weeks because the medications typically takes months to take effect.
Participants were allowed to have leflunomide and diclofenac added to their treatment plan, two weeks into the study. This is a big no-no for very obvious reasons. How are you supposed to know what’s causing what? Typically if participants are doing terribly in a study, they either have to a. white knuckle through, b. opt out of the study, or c. depending on the study design are allowed to crossover to the treatment group if they were on placebo.

Parting Words

Now this is the part where I’m supposed to tell you whether tong luo hua shi is effective in complementing standard rheumatoid arthritis treatment. But, I’m not going to do that.

I want you to analyze the data yourself.

I want you to think for yourself.

Happy researching and stay safe!

If you want to keep on learning, please subscribe to my mailing list.

References

Clarke TC. Use of complementary health approaches for musculoskeletal pain disorders among adults: United States, 2012. Available at: http://www.cdc.gov/nchs/data/nhsr/nhsr098.pdf. Accessed October 18, 2016

Liu W, et al. A multicenter, randomized, double-blind, placebo-controlled trial evaluating the efficacy and safety of Tong Luo Hua Shi capsule, a modernized Tibetan medicine, in patients with rheumatoid arthritis. Trials. 2016 Jul 27;17:359.

Pubmed: https://www.ncbi.nlm.nih.gov/pubmed

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10 powerful life lessons to help overcome adversity

January 2, 2017

2017 is upon us and is gearing to be very interesting. It’s going to be a year of change. Lots of changes. Whether for the better or for the worse remains to be determined… but I’m NOT going into any politics. Lol!

We can’t deny that 2016 is over and it’s been a whirlwind both in the world of foreign and domestic affairs. These events may even have affected your life in some way or another: ridiculous increase in your insurance premiums? Your insurance company decided to not cover your medications anymore without any real justification? Maybe your health took a turn for the worse? While we can’t control everything that happens around us, we certainly can look inwards and develop strategies to not only cope with adversity, but overcome and thrive. Why be a victim when you could be a conqueror?

So far, I’ve been blessed with perfect health. Living with with a chronic illness is tough. It can devour you and unfortunately, sometimes it comes to define you. But it doesn’t need to be that way.

I’d like to share with you a very personal story about the bravest, noblest, most compassionate, and selfless person I have ever met: Paul Feeney. Maybe you may find some positive inspiration learning from his struggles but I secretly hope you learn most from his struggle.

Back in 2013, after fighting esophageal cancer for just shy of 2 years, my husband Paul passed away. His passing is not the point of this post, but rather what he has to teach each one of us about adversity, courage, dignity, and the genuine love of life.

Here’s a picture of Paul doing dips at the gym. Sorry for the poor graphics. My phone was kind of basic and not that great back then. But I digress. That little pack he has around his waist, that’s chemo. More precisely fluorouracil (5-FU), and it’s pumping directly into his veins. I believe I took this picture during his second or third month of chemotherapy with cisplatin and 5-FU. This regimen is downright nasty. He probably felt like shit, pardon my French, but you would never know because he would never let you know. Some of you may know someone like this. The eternal stoic.

After he passed away, I had to clean out his office. In the process, I found treasure. He never kept a diary, just thousands of random pieces of paper with incredibly insightful messages, intermixed with tax receipts, and to-do lists. Here is a list of his 10 powerful life lessons.

Like most people’s fight with cancer, Paul’s was both brutal and bloody for his mind, body, and soul. Despite all odds, throughout his illness he successfully continued running a business, he continued his Marine Corps exercise regimen x5 days a week, maintained an active social life, and continued being a doting son and husband. During his struggle, he never let the disease define him. It was something that he needed to overcome:

I have plans!

But sometimes, no matter how positive you are, no matter how proactive you are, and no matter how much you try, you simply can’t win them all.

The day before he passed, when there really was no hope, his physician walked into his room and told him there was nothing more he could do. We had exhausted all avenues. He had maybe two more weeks to live. Paul calmly stood up, shook his doctor’s hand like a true gentleman and thanked him for everything he had done.

We may not choose to suffer, but we can choose how to face suffering. Be kind, hold yourself to a higher standard, choose to be happy. How will you face your Goliath?

Capt. Paul W. Feeney (July 23, 1963 – May 4, 2013)

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Overcoming Inflammation

How to boost joint wellness with turmeric

December 19, 2016

Turmeric capsules, supplementing with turmeric can help joint inflammation

A few years back, my mother-in-law brought me a grocery bag full of supplements. You heard it, a GROCERY BAG of supplements. To boot, this was her monthly supply. Not lifetime, not yearly, her monthly supply. Every month, she was ingesting a grocery bag full pills for various ailments. That’s a lot pills. This was very concerning to me. First, this had to be very expensive and she had very little, if any knowledge of what she actually was taking. What were some of the potential side effects? Were any these interacting with each other? Were these interacting with her prescribed medications for diabetes and thyroid disease?

Now, I don’t know about you but the world of supplements is downright daunting. How do you know whether a supplement works for its intended purpose and is it safe? There’s so much conflicting data out there.

Today, I’d like to show you how I approach assessing the efficacy and safety of any supplement, medication, or procedure.

I’m going to use turmeric, also known as Curcuma, as an example. This is a supplement that is rapidly becoming an important player in the world of supplements. It’s used to treat various conditions such as osteoarthritis.

Safety First!

First, here are a few safety tips. The FDA regulates herbal supplements but they fall under a group called dietary supplements. When it comes to dietary supplements, manufacturers don’t have to seek FDA approval to put their product on the market. They don’t even need to prove that their product actually works. Manufacturers must follow good manufacturing practices to make sure that the supplement is processed consistently and meets quality standards.

For example, they aren’t allowed to cut their product with pesticides and heavy metals. In the event that they do, the FDA can take action against the manufacturer or distributor and have the product recalled. Basically the FDA has to make sure dietary supplements aren’t harming anyone.

High risk situations

High risk situations include: you’re pregnant or breast-feeding, you’re about to have surgery, you’re younger than 18 or older than 65, or you’re already taking other medications. Herbal supplements may interact with your other medications and these interactions could be harmful or life-threatening.

The following are items that should always be made available on the labels of all herbal supplements:

The name of the supplement
The name and address of the manufacturer or distributor
A complete list of ingredients
Serving size, amount, and the active ingredient

When in doubt, ask your doctor or your pharmacist. I argue that, you should ALWAYS ask your doctor or pharmacist.

Anything you put in your mouth, whether it be FDA approved, regulated, or not, in a way is a medication and has the potential to cause good but also cause harm.

Of note, the FDA regulates American manufacturers and distributors. If the supplement comes from anywhere else, all bets are off. Many countries don’t screen for or regulate their manufacturers so it’s impossible to know whether they contain any unwanted and potentially dangerous components. I’ve included a few websites in the reference section, to help you with your research.

The Efficacy of Turmeric Extracts and Curcumin for Alleviating the Symptoms of Joint Arthritis: A Systematic Review and Meta-Analysis of Randomized Clinical Trials

Osteoarthritis is super common. It affects about a quarter of the worldwide population. There are no known cures. Well maybe joint replacement but that’s kind of extreme and even then, it’s not a magic bullet. Turmeric is a spice used in cooking for a really long time. Millenia… This spice has different bioactive components, the most important one being curcuma.

Curcuma is actually really interesting. It modulates a completely different inflammatory pathway as compared to standard arthritis medications like naproxen, ibuprofen, or celecoxib. It modifies something called NF-κβ signaling. This pathway helps maintain normal immunity, but it also is linked to cancer and other diseases such as heart disease, asthma, inflammatory bowel disease, and osteoarthritis. Don’t get me wrong, abnormal NF-κβ activity DOES NOT cause cancer or osteoarthritis. It simply appears to be active when these diseases are present.

Methods

That really long header you just read, is the title of a recent study that sought to look at all prospective randomized clinical studies using turmeric for arthritis. This type of study is a meta-analysis. The researchers found eight studies: 4 high quality studies and 4 moderate quality studies. The researchers used the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) to assess arthritis severity. This is how bad the arthritis is general, how it limits your quality of life. They then measured pain with the pain visual analogue score (PVAS). Thankfully the dose of turmeric was similar across the studies: about 1 gram/day without pain killers and about 500 mg/day with pain killers.

Results

What the researchers found was that people receiving turmeric had lower WOMAC scores compared to placebo. People receiving turmeric reported improved morning stiffness and overall ability to move. Moreover, the improvement seen in the turmeric groups were similar to those achieved in ibuprofen and diclofenac groups. These are standard arthritis medications. The problem with them is that they can cause stomach problems, they can affect the liver and kidneys, and they should not be used when someone has coronary artery disease or is on blood thinners. The nice thing about turmeric is that it is not associated with any of these nasty side effects. At high doses it can cause some diarrhea and it has NOT been studied in pregnant or lactating women.

So basically, the study concluded that turmeric or Curcuma more specifically, at dose of 1000 mg per day can help the decrease arthritis symptoms. They also mentioned that the sample size (i.e., number of people) of the various studies they included were rather small and some of the studies weren’t top notch quality.

“Therefore, turmeric extracts and curcumin can be cautiously recommended for alleviating the symptoms of arthritis, especially osteoarthritis.”

A few words of caution:

Always carefully read the packaging.
More is not necessarily better. 8 -12 grams of curcumin can cause diarrhea and can cause anemia.
Notify your doctor when you decide to start a new supplement.

Are there other natural supplements that block NF-κβ?

So the question is, are there other natural supplements that block NF-κβ? The answer is yes. Researchers are actively looking into these potential supplements: green tea, rosehip, and resveratrol. Whether theory translates into clinical efficacy? Please stay tuned for more!

Medical Disclaimer

This information is offered to educate the general public. The information posted on this website does not replace professional medical advice, but for general information purposes only. There is no Doctor – Patient relationship established. We strongly advised you to speak with your medical professional if you have questions concerning your symptoms, diagnosis and treatment.

References

NIH Dietary Supplement Label Database: https://dsld.nlm.nih.gov/dsld/

National Center for Complementary and Integrative Health: https://nccih.nih.gov/

Office of Dietary Supplements: https://ods.od.nih.gov/

Pubmed: https://www.ncbi.nlm.nih.gov/pubmed

Daily JM, Yang M, Park S. Efficacy of turmeric extracts and curcumin for alleviating the symptoms of joint arthritis: a systematic review and meta-analysis of randomized clinical trials. J Med Food. 2016 Aug;19(8):717-29.

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