Give Yourself Permission

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It seems that having a chronic disease comes with a hearty side dish of guilt — for not being able to do things, having to cancel activities, or otherwise disappointing those around us. You need to give yourself permission to do the things you need to do and NOT do the things you are unable to.

Read the full article here: https://rheumatoidarthritis.net/living/give-yourself-permission/

The Top 19 Mobile Apps for Tracking RA

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Mobile technology seems to have revolutionized our lives and certainly medical apps are some of the most popular. RheumatologyNetwork.com has reviewed the top 19 apps for tracking RA symptoms. (The slideshow rating each app is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/review-ra-mobile-apps-meeting-some-needs-missing-mark-others and the related story/synopsis is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/ra-mobile-apps-meeting-some-needs-missing-mark-others?GUID=1F23207F-2112-4CD6-9E2A-6B74F5025767&rememberme=1&ts=04042017.)

The review included two broad areas. The first, predictably, was what disease activity could be tracked/assessed. The other was the Mobile App Rating Scale (MARS) which includes engagement, functionality, aesthetics and information quality — basically how the user interacts with the app.

I applaud the availability of these apps partly because RA is so unpredictable that it is great to have something at hand with which to track what’s going on and then be able to discuss this information at a later date with your doctor. One of my favorites, Creaky Joint’s (www.creakyjoints.org) Arthritis Power, was the only one that included both ACR and EULAR laboratory measures.

That being said, there appears to be room for improvement on all of the apps, but there are some great contenders to help us on a daily basis. I should note that this is a New Zealand study, but all the apps are available in the US.

I encourage you to view the slideshow or read the story (or both). However, here is a synopsis excerpted from the article:

The review included 19 apps, which differ slightly:
 
  • 14 apps included at least one validated instrument measuring RA disease activity.
  • 11 apps allowed users to enter a joint count and seven of these used the standard 28 swollen and tender joint count.
  • 8 apps included at least one ACR and EULAR-recommended RA composite disease activity (CDA) measure.
  • 10 apps included data storage and retrieval.
  • Only 1 app, Arthritis Power, included both an RA CDA measure and tracked data, but this app did not include the standard 28 tender and swollen joint count.
  • The median overall MARS score for apps was 3.41/5. Of the six apps that scored at least four out of five on the overall MARS rating, only one included a CDA score endorsed by ACR and EULAR, but this app did not have a data tracking function.

I hope that however you track your RA activity, that it too low to track today. Thanks for checking in.

#105 – Tie Your Shoes or You’ll Fall Down

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If you write at all, you will find that you have some pieces of work that you like more than others. They are more fun or more meaningful or compelling than some other things you’ve written. Or you just like them better. I was looking for something completely different and I ran across this post which is truly one of my favorites. Please forgive me for recycling it, but I hope you enjoy it as much as I do.

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This morning there was a news story about a “Rules for Kids” book that was compiled by two young girls who both had younger sisters with which to contend. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down. What a wonderful way to express the old saying of Proper preparation prevents p— poor performance. (I guess it’s the “Everything I need to know I learned in kindergarten” approach.)

At any rate, it got me to thinking about rules to live by for people with RA. We all have them and, like parents with a new baby, when you’re first diagnosed, it would be nice to have an instruction manual.

Here are my top 10 rules. Feel free to share your own. Thanks for checking in and don’t forget to tie your shoes!

  • 1. Remember, it’s a diagnosis, not a death sentence. Many, many people with RA live full, productive lives.
  • 2. Do your research, but don’t panic. Thanks to the Internet, there is a wealth of information about the disease from medical sites as well as real-world patients. Learn what you can, but understand that each situation is different and that the worst-case scenarios are just that: “worst case”. There is no pre-defined path for disease progression or even medical treatments.
  • 3. Find a rheumatologist that you trust and with whom you can communicate. Don’t be afraid to change rheumatologists if you feel that your concerns are not being addressed. Your future treatment options and well-being are in this person’s care so it’s important you find the “right” doctor. Once you find that person be clear about your health and concerns. S/he can’t help you if you aren’t honest about how you’re doing.
  • 4. Give yourself permission: permission to not feel your best, permission to not always do everything, permission to let your body rest when it needs it, permission to live your life to the fullest extent possible.
  • 5. Don’t give up. RA will be part of your life going forward. If something isn’t working for you, try another treatment option or augment what you’re doing with other therapies such as physical therapy, massage, etc.
  • 6. No one is perfect, but we can all be better. Do the best you can for yourself. Stress, unhealthy food, lack of sleep, and lack of exercise can increase your inflammatory response. Limit those factors and triggers. Make “being healthy(ier)” part of your every-day life.
  • 7. Enjoy your life. It’s easy to be overwhelmed by a chronic disease. Sometimes it takes a conscious effort to count your blessings and revisit those things that make you smile. Always keep your sense of humor.
  • 8. Share your burden. You’re going to need the help and understanding of your family and friends. They can’t be there for you if you don’t share your needs. Seek out a support group — either in person or any of the wonderful resources on the Internet.
  • 9. Take one day at a time. Every day will have its challenges and rewards. RA can turn around 180 degrees in a matter of minutes. Do what you need to and can for today and worry about tomorrow when it comes.
  • 10. Tie your shoes or you’ll fall down. In other words, be prepared. Your life will be filled with unexpected challenges. You need to do the best you can for yourself in order to meet them. Take your medications, get your rest, talk to your doctor, share with your friends and family. Then if you need a “Plan B” or if you actually do “fall down”, you’ll be in the best position possible to recover.

Healthy Diet May Reduce Chances of Early-Onset RA in Women

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There is a lot of discussion in the RA community about diet. Some people report that avoiding certain foods like gluten helps keep the disease under control. Others point to having certain foods such as alcohol or sugar as sure-fire ways to induce a flare. There are a number of published diet plans that promise to reduce inflammation and, therefore, calm or even cure diseases like RA, psoriasis, and lupus.

I, personally, have never been able to link what I eat to how my RA reacts.

While there is a lot of science supporting the connection between a person’s digestive system and inflammation, I, personally, have never been able to link what I eat to how my RA reacts. I was, therefore, more than a little interested when I read a report that demonstrates a link between diet and early-onset RA in women. In this case, early-onset applies to women 55 years or younger.

Read the rest of this story here: https://rheumatoidarthritis.net/living/healthy-diet-early-onset-ra/

Is Methotrexate Underutilized?

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Methotrexate (MTX) is an accepted first-line drug for patients diagnosed with RA. Oral MTX was what my rheumatologist started me on after my diagnosis. For various reasons, the main one being I hated the side effects and I refused to take it, I was soon switched to my first biologic. However, researchers are now asking if this well-known and affordable drug is being used to its full potential.

Read the rest of this article here: https://rheumatoidarthritis.net/living/methotrexate-under-utilized/

 

Blueberries (??!!)

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There are people that I know and respect that tell me that diet affects their RA symptoms. Most frequently they avoid eating certain things that seem to worsen their RA symptoms or can even cause a flare.

I’m not one of those people. I’ve never been able to come to a cause-and-effect of what I eat and how my RA reacts. That doesn’t mean that I haven’t tried. With the close link between our digestive and our immune systems, this seems to be a logical approach. I’ve removed things like gluten and sugar and alcohol. I’ve added things like turmeric and tart cherry juice and have even tried gin-soaked raisins (mainly because I like gin and I like raisins). But I haven’t been able to see a discernible difference.

Turns out, I’m not alone. A recent survey published by Arthritis Care & Research (published by the American College of Rheumatology) and reported in MedPage Today, indicates that about 76 percent of us also report no connection – either improvement or worsening of symptoms.

But that means that 24 percent of us do!

Read the rest of the article here: https://rheumatoidarthritis.net/living/blueberries/

Pneumonia Vaccine May Not Protect RA Patients

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Like many RA patients, I take certain drugs that suppress my immune system and therefore make me more vulnerable to infections. To help counteract that risk, I’m careful about washing my hands, staying away from sick people, and getting my flu shot every year. My first pneumonia vaccination was given at my rheumatologist’s office as a condition to starting a biologic.

It was, therefore, somewhat alarming to read a recent study wherein the pneumonia vaccine wasn’t any more effective than the placebo in protecting RA patients from contracting pneumonia. In fact, there were actually two more vaccinated patients that got pneumonia than those who got the placebo. This is even more serious when you consider that pneumonia ranks fairly high in the cause of death of those of us who have RA. Considering that the researchers started out with the hypothesis that the vaccine was effective in preventing pneumonia in RA patients, I’m sure the outcome of the study was quite startling to them as well.

Read the rest of the post at RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/pneumonia-vaccine/

Money and Medicine — Is Transparency the Answer?

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One of the greatest shocks that a patient has after being diagnosed with RA (which is the first shock) is how expensive treatment is. Besides doctors’ visits and labs and physical therapy and tests like X-rays, there is the cost of medication. Many patients are started on methotrexate and perhaps another DMARD which can be inexpensive to moderately priced. However at the point that the patient “graduates” to biologic medications, and many of us do, the costs really escalate. A recent study I read reported that approximately 87% of all patients were switched to a biologic as the next treatment step after oral methotrexate (as opposed to injected methotrexate or other DMARDs).

There are two ways of looking at prescription sales. The first is the physical number of prescriptions that are filled. Depending on the list you find, generic Lipitor (a cholesterol drug) is at or near the top. Interestingly in this day of opioid crisis, the hydrocodone/acetaminophen pain killer also makes the top 10 list. There are no RA-related drugs on the list. The closest I’ve found is prednisone, which is used for all kinds of things, not just RA. It comes in at number 19.

The second way to look at prescription sales is by the dollar amount. That is, even though the actual number of prescriptions is not as great as the first list, the cost of the drug propels it on to this list. Again, it depends on the list and when it was produced, but you’ll likely find not one, but four, biologics used for treating RA: Humira, Enbrel, Remicade and Rituxan. That’s 40% of the top-10 drugs by sales.

It’s hard to miss headlines that raise concerns about price-gouging by pharmaceutical companies. Turing Pharmaceuticals CEO who raised an HIV/AIDs drug from $13.50 to $750 overnight and the increase of Epipen prices to $500 are two that come immediately to mind.

But why is that? I’ve been around a lot of different industries and I’m here to testify that inflated pricing occurs all over the place. We don’t see headlines or Congressional investigations when fancy new smart phones or even basics like housing are overpriced.

It’s because, right or wrong, we hold pharmaceutical companies to a higher standard. We tend to think that it’s wrong to make a profit from people who are ill.

I agree completely that any product that affects people’s health or safety should be held to a higher standard than those that don’t. That’s why we have agencies like the FDA – to help ensure that medications do what they are intended to do and do so at minimal risk to the patient.

But should pharmaceutical companies be held to a different standard than any other company that produces commercial products? Like other companies, pharmaceutical companies have a wide range of stakeholders. Many are public companies and therefore have shareholders that have a right to expect a return on their investment. They need financial resources to attract scientific talent. They must fund new drug development. The last figure I saw, which is a few years old now, estimated that it takes $5 billion (with a “b”) to bring a new drug to market. And the drugs that do pass all the reviews and regulatory hurdles must bear the burden of paying for the research and development of drugs that didn’t make it.

So why do we think it’s such a bad idea to let pharmaceutical companies – who hold the keys to our future health – make a profit? I personally feel that all companies (not products) should be treated under the same standards. In case you missed it, the point is any company that engages in unethical behavior should face sanctions regardless of what kind of company they are. But I also believe that all companies must make a reasonable profit to thrive.

I would have loved to have been at the American Medical Association’s National Advocacy Conference this week. There was a debate about prescription drug costs between Kirsten Axelsen, VP of Global Policy for Pfizer, Inc. and Aaron Kesselheim, MD, JD, MPH who is an associate professor of medicine at Harvard Medical School and a noted policy scholar. I won’t recount the debate here, but there were some incredibly interesting and introspective points made on both sides of the argument. A report of the debate by MedPage Today can be accessed here and is well worth exploring: http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/63550?xid=nl_mpt_DHE_2017-03-03&eun=g999342d0r&pos=2

The other interesting thing that happened along these lines this week was that Janssen released its U.S. Transparency Report. (The website, the full report, and an executive summary can be accessed here: http://www.janssen.com/us/us-pharmaceutical-transparency-report)  Janssen’s parent company is Johnson & Johnson and I’ve been a fan ever since the 1982 Tylenol recall which still stands as the gold standard of public concern, crisis management, and transparency. For those of you are unfamiliar with this event, before tamper-resistant packaging, a few bottles of Tylenol were poisoned. Even though it appeared to be an isolated incident in Chicago, J&J recalled all the Tylenol capsules across the US and took steps to ensure a safe supply of the drug. It cost them millions.

Janssen’s is actually the first such transparency report I’ve seen. (That doesn’t mean that there aren’t any – just that I haven’t seen them.) Public pharmaceutical companies already face a huge amount of disclosure requirements from the Securities and Exchange Commission (SEC) and other regulatory agencies. This additional transparency reporting adds yet another layer of information to what is already available. While the full report should (IMHO) be packaged and sold as a cure for insomnia, the website as well as the executive summary is actually pretty approachable by most humans, and I applaud Janssen for that.

But is more transparency the answer?

I have done a lot of work with public companies over the course of my career. These companies (as noted above) must file all kinds of disclosure documents with the SEC to help ensure transparency for the investing public. In 2000, the SEC implemented the Regulation Fair Disclosure (Reg FD) and in 2002 Congress passed the Sarbanes-Oxley Act (SOX).  The amount of effort and associated cost for companies to comply with these regulations was enormous.

What was the effect? While it’s definitely a mixed bag of results, on the downside, it definitely dampened the market. The burden of complying with RegFD and SOX caused some companies to stop being a publicly traded company while other companies cancelled their public offerings. While the regulations were put in place, in part, to help the individual investor, they probably helped them the least. I heard one securities lawyer quip that the RegFD and SOX filings were the only documents that got read more often before they were published than after. What he meant was that they were read more by the lawyers and accountants who were paid to produce them than read by the investors they were intended to help.

I think Pfizer’s Kirsten Axelsen makes this point very well in the debate stating that additional pharmaceutical company transparency laws, like the one recently passed by New Hampshire, won’t lower medical costs. Based on previous experience with similar SEC regulations, I would suggest that it would, in fact raise those prices. Sure you want transparency, but do you want enough to pay another $5 or $50 or $500 per prescription?

As a patient, even a nerd who actually reads the full version of transparency reports, I don’t necessarily care about more transparency. What I care about is affordable medication for those people who need it. And yes, I also want pharmaceutical companies to make a reasonable profit so they can continue to hire smart people and make new drugs.

Unfortunately, there is more to the patient’s cost of medication than just drug pricing. There are a lot of factors involved, but let’s be honest that much of a patient’s actual cost is determined by insurance coverage. I take a biologic that has a list price of more than $15,000 per infusion. Right now, because I have good insurance, I pay a $50 copay. If I hit my deductible and out-of-pocket limits, it won’t cost me anything. There are many, many people in this country that are not as fortunate as I am. They cannot afford their medications. They cannot afford to treat the diseases that may be killing them.

I’m not going to debate the Affordable Care Act (also known as Obama Care). It will no doubt be repealed in the near future anyway. The bad news is that no one seems to know what will replace it, so no one really knows whether they will be able to afford medical care (including medications) going forward. This type of uncertainty is far more damaging for patients than any lack of transparency.

A patient’s cost of care is many things. But as I heard from a friend just today, “… it’s policy, not politics.” It’s not in adding transparency requirements, it’s not in throttling the marketplace, it’s not  applying a separate set of ethical standards to one type of company and not others. It’s making responsible policy decisions that create the environment in which all of us have access to reasonably priced health care.

Knees and Needles

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I am a well-scarred veteran of the knee wars. Even before my total knee replacement on the left side, I’d had multiple arthroscopic procedures and numerous office visits to address knee pain. It’s really not surprising. Knees can be damaged both by osteoarthritis as well as rheumatoid arthritis, so even if you don’t develop inflammatory arthritis, simple wear and tear over the years will take its toll on your knees. Even everyday activities can cause strain and sprains on these weight-bearing joints.

Well before surgery is even contemplated, doctors have a number of therapies available to them including physical therapy, bracing, RICE (rest, ice, compression, elevation) and similar manual techniques. There are also three frontline weapons in the physician’s arsenal involving needles. I am living proof that all three of these can provide welcome relief.

Read the rest of the post on RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/knees-and-needles/

Feels so Good, Hurts so Bad

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After more than eight years of being diagnosed with RA I truly understand that it can be weird and unpredictable. That being said, I’m in this strange place of feeling really, really good but I have joints that hurt really, really bad.

Last December I changed treatment plans yet again. I started Simponi Aria and have continued with my methotrexate injections. Simponi Aria is the infused form of the Simponi injections which I had been on before. Simponi Aria starts with a loading dose, has a second loading dose four weeks later, then continues on with regular infusions every eight weeks. I had my first loading dose in December with the second one in January, then had my regular rheumy follow-up in mid-January, shortly after the second dose.

I had felt lousy for some time. My previous treatment plan had failed then I was without any medication except MTX and a low-dose prednisone for a month waiting for insurance approvals before I started treatment. And we all know that it can take months before a treatment starts to work.

At my rheumy appointment, it was too early for the Simponi Aria to have “kicked in”, and I was so discouraged at feeling bad for such a long time, my rheumatologist suggested a steroid shot, which we did. I had been having issues with my on-again/off-again hip bursitis anyway, so we did the injection at that site.

A week or so later I realized that I was feeling better. Not great, but better. I initially put it down to the steroid shot. By then I had started trying to walk most days which I have not only been doing, but gradually adding distance to my walks. Now I walk a very respectable distance at least five days a week. Although my ankles, knees and hips get sore from the exercise, I haven’t flared from all this additional stress on my body. And as time has gone on, I’ve continued to feel better — either from the exercise or the treatment plan or both.

Beyond that (hallelujah!) the fatigue is gone. That bone-deep, unrelenting, energy-draining, spirit-killing fatigue has lifted. I now feel good when I wake up in the morning. I have energy. I want to do things.

I honestly don’t remember feeling this good all over since before my diagnosis.

On the other hand (literally), I have been having specific joint pain that would have previously sent me running to my rheumatologist’s office. Since I am feeling so good otherwise, I haven’t scheduled an appointment. However, the joints in my hands have been increasingly swollen and tender, often with sudden shooting pains that take me by surprise. I use Voltaren gel like hand lotion and I’ve quit doing things that require a lot of hand work — like extended cooking sessions.

So how can I feel so good all over but have such pain and obvious RA symptoms in my hands?

Honestly, I don’t know.

I do know that RA is a complex disease and that there are different kinds of inflammatory elements that can come into play. Simponi Aria is a TNF-blocker that interferes with that specific inflammatory response in my body. Other types of drugs work by interfering with other elements such as interleukins or Janus kinease (JAK) responses. Just because Simponi Aria is apparently calming my TNF response doesn’t mean that the other inflammatory agents also play dead. It’s possible that I feel good all over because my primary issue is TNF response and it’s coming under control, whereas interleukins or JAKs continue to be evident in my hands and (occasionally) other joints. It’s just a theory I have and, as far as I know, there is no scientific data to support it, but it seems to support what’s going on.

What I do know is to count my blessings. Right now I’m feeling good, optimistic, energetic, inspired. I haven’t had that in a very long time.

I hope you have many blessings to count in your life as well. Thanks for checking in.