Do we really do what the doctor advises?

I saw my rheumatologist today and the first thing he wanted to know was whether or not I am actually taking  the drugs he has prescribed and how closely I am following the dosage and frequency instructions.  I imagine he has seen the recent stories and the study about adherence to medications in RA and wants to see for himself if those numbers reflect the habits of his own patients.

This is not a a subject we have ever discussed but perhaps the current headlines from EULAR data have made him wonder if he has been wrong in his assumptions.

It was impressive that he wanted to find out for himself and was refraining from blaming patients until he had more data to work with.  

                                          answersincme.com

We can see from Dr Montori's work on noncompliance that there are many reasons people may not follow the advice of their doctors exactly. And the reasons he lists do not even consider the cost of medications which forces some people to make their medications last longer by taking them sparingly.

$$$

Even the most careful of us sometime alter the scheduling of our medications if they have a negative effect on another important facet of our life. It's such a struggle to live a normal life with chronic illness that when it comes to graduations, weddings, work and other life events, I think most of us have changed the dosing schedule on occasion to something that spares our longed for "real" lives.

methotrexate vials

I would argue that this is both minor and necessary. I just watched a depiction of my life in jellybeans as seen on Eric Alper's blog and I think we all want to make the most of the few jellybeans we have left for ourselves.  

my jellybeans

We would all like to have concordance between us and our doctors and the current movement to patient empowerment is helping us to move in that direction.

Medication adherence in patients with rheumatoid arthritis: a critical appraisal of the existing literature.

Part 2 Immune System Gone Wild. Sjogren's National Conference Dr. Papas

Dr Athena Papas was an outstanding speaker at the National Sjogrens Conference. She is the Head of the Division of Oral Medicine and Public Health Research at Tufts University School of Dental Medicine in Boston. Her talk was full of useful and practical information for people with Sjogren's Syndrome.

On one of her first slides we heard that a lack of saliva can also cause trouble speaking and swallowing. We also learned that it occurs in a 9:1 ratio of women:men. This means it can take even longer for men to be diagnosed.  

                                    

                                                      9 out of 10 with Sjogren's are women
As saliva in the mouth goes down the decay and erosion goes up.  She suggested the use of fluoride to help stall decay. If your gums recede then you will be more prone to root decay.  Acidic drinks and juices may cause rapid erosion quickly. The best drinks are milk and water according to a chart presented that detailed the acidity (pH) of common drinks.

Dr Papas mentioned sialoliths or salivary "stones"  which can cause pseudomonas infection of salivary glands and showed a slide of a patient with lichen planus in the mouth.  She commented that lichen planus can get away on you fast make sure you have it seen. If you have candida yogurt may help.

Acid reflux is a common complaint and it needs to be controlled to protect the teeth from thinning. If your amalgam fillings are really shiny it may be that the acid from reflux is polishing them.

                                        smilesbypayet.com                                       

Psych meds in general are the most drying group of medications. Lyrica is one of the most drying, as is Prozac.  

Dr Papas was the principal investigator on the dose escalation of Salagen. She says cytokines block salivary secretion. Salagen makes those glands that still produce saliva work harder. She also demonstrated a method of massaging the salivary glands to stimulate them.

She suggested getting fluoride varnish every 3 months from the dentist for tooth protection and the use of prescription fluoride toothpaste that can reharden the tooth surface. MI Paste contains ACP (calcium phosphate) and is good, as is Caphosol. 

Dr Papas made comments about the benefits of implants for people with Sjogren's.

Near the end of the talk Dr Papas presented a slide summarizing treatments:
Use a sialogogue (salivary substitute)
Use prescription strength fluoride
Use lubrication
Use calcium and phosphate rinses
Use MI paste
Stimulate with Xylitol gum
Stimulate salivary glands with massage after heating
Use implants when teeth are extracted

These are just the points that particularly interested me. The whole talk was informative and I hope to hear Dr Papas again in the future. 

To see the post about Part 1 of the Sjogren's National Conference click here

Other Sjogren's posts:

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

Part 1 Immune System Gone Wild Sjogren's National Conference 2013,Dr. Arthur Bookman

The Sjogren's Society of Canada had the 7th Annual National Conference in May this year. It was a learning experience that Sjogren's patients look forward to all year.  For the first time this year the conference was also an Accredited Group Learning Activity for doctors and provided Continuing Education credit for dentists.

We started the day with Dr Arthur Bookman giving us an overview of the criteria for the diagnosis of Sjogren's Syndrome. He described it as an immunological storm.  Dr Bookman is also to thank for the inspired naming of the conference. 

He told us that hypertrophied salivary glands are often seen in Sjogren's.  If the salivary ducts are injected with a tracer dye you can see damage and abnormal arborization.  

He also talked about the length of time it takes to get a diagnosis of Sjogren's Syndrome based on experiences of people who attended the multidisciplinary clinic at Toronto Western Hospital. It takes 27 to 31 months for the diagnosis and from 2.9 to 3.2 different doctors. This leads to patients being unhappy with the medical profession.  On the Devins Illness Intrusiveness Scale  Sjogren's ranks very near Multiple Sclerosis.

ScienceDirect.com

He also said that systemic treatments such as prednisone, hydroxychloroquine, immunosuppressants and TNF inhibitors are ineffective, though Rituximab is sometimes effective. It has been seen to improve dry mouth/salivary symptoms and dry eye and fatigue. Future treatments may include Benlysta and allogenic mesenchymal stem cell transplantation (Sun, Nanjing abstract 2557, ACR 2012)

Does Suing Corporations Improve Healthycare?

People are talking about our need to improve our approach to non-communicable diseases (including chronic disease).  The main suggestion is that we improve health overall rather than deal only with sickness.  

One way this can be done is through a primary care system that is accessible to everyone, and through a strong public health system that is accountable to citizens, not to corporations.  I found a great letter that sums up my feelings:

"Do we really want to continue to live in a world where the oversupply and marketing of tobacco, alcohol, unhealthy processed foods, and soft drinks is tolerated simply to allow continuing profits for the shareholders of the transnational corporations producing and distributing them, while the taxpayer funds the health services and pharmaceutical response to the ensuing disease and injury?"

Letter from Sally Casswell of the School of Public Health at Massey University in Auckland.

That is a very strong statement that most of us can agree with. In fact the Province of Ontario is in the process of suing tobacco companies to recover some of the money we have had to spend to treat tobacco related health problems. Nine out of 10 provinces in Canada are suing so far.

Ideally the aim of the health care system should be to manage health, not sickness. This way the burden which  chronic disease adds to an individual's life could be lessened by identifying problems early and putting them into remission fast. Identifying and promoting lifestyle changes that could help to improve health habits and lessen the incidence of chronic illness is also a good goal.

This activity needs to go hand in hand with improved health literacy. It is possible that changing some of the language and labels in medicine can make instructions clearer. I would argue strongly that we need better education about health among the youngest schoolchildren which would continue formally until they leave school.

As Dr. Brian Goldman said at his address at the National Health Leadership Conference: "Health and patient engagement needs to be a core subject. It needs to start as early as preschool." via @ChristinaClarke #NHLC

Leonard Kish wrote a very informative blog post called "Emerging Heroes in the Health Attention War" and promises more to come about the "war to fight chronic disease before it starts".  I was most interested in the segment titled Changing Culture to Less is More about the work of Dr Victor Montori.

Here's a link to an article about childhood obesity called  "WHO urges tougher food marketing rules to curb childhood obesity"

History of the war on smoking (in Canada)

Tackling sickness at its source: An interview with TED book author Rishi Manchanda.  Prevent illness at its source

Arthritis Walk 2013

For 30 years I stubbornly resisted the Arthritis Walk. With the sore feet that commonly accompany Rheumatoid Arthritis it seemed to be counter intuitive.

This year, since I'm a member of  Patient Partners In Arthritis I joined their team and embarked on fundraising. Even with a very slow start I got some contributions that were encouraging and raised over $1400, for which I thank all of my friends and relatives.

The day was beautiful - sunny and warm.  We gathered at the Evergreen Brick Works in the Don Valley on Sunday morning. It was a place in Toronto I had not seen before but always meant to.

Here's our team, ready to go. We made it to the Top Five in team fundraising in Toronto.

Before we started to walk there was a warm up led by enthusiastic dancers.

The walk went very smoothly. I did the one kilometer walk instead of 5K as most of my team mates did. Near the end there was a live brass band to give us a fun break and to cheer us on!

These are some of the walkers near the beginning of the route. At the tent on the right there was a Keep Moving dance contest.

All in all it was a very nice way to spend a morning - with friends and for a good cause. Here are some more of the sights along the way.

And a well-deserved reward at the end of the walk.

Thanks to Donald for many of the pictures.

Learning From a Clinical Trial

At one point in my care my doctor suggested that I participate in a clinical trial for a possible new drug for rheumatoid arthritis.  It was a double blind trial which meant that neither I nor my doctor and the trial staff knew who was receiving the real drug and who was receiving the placebo.

                                        designyoutrust.com

The whole trial protocol  was very new and exciting to me, from the very detailed informed consent, to the questions that had to be answered in great detail, and the necessary lab tests before starting the new drug. The appointments that were necessary were laid out in detail so that I was able to fit them into my schedule.

All of this extra care and attention made a real difference to me.  I learned a lot from the trial including the exact status of my health at the time.  One of the most valuable things I found out was that I did not have to go to the GP doctor every week to have my methotrexate injection.  No one had ever told me I could do it myself!!

The staff was encouraging and helpful.  I was able to ask about every health issue. Getting that kind of attention is a rare luxury in today's health system and I am sure that alone improved my health.

I also found that I had an inflated view of my skills as a patient.  In my mind, I was the most careful patient ever. The one who could truly be counted on to take my pills exactly as prescribed.  It seems my opinion in this area was not totally accurate.  

Since the pills had to be kept in the refrigerator and taken with each meal I had to make sure to have a supply at work so I would not miss taking any doses, but I could not keep too many there because of the necessity to count and balance the pills I had left.

                                            collecttoys.net
In fact I am sure that at one point I made a mistake, forgot I had taken one and took another.  That's when I began to think that I might in fact be taking the real drug because I developed a slight rash and some itchiness.  (In fact I was taking the real drug but only found out much later)

The study was suddenly discontinued. The final letter said that there were some bad effects in the animal studies and I had to return all of the pills I still had - that's when I found that the count was off.

The trial was a rare opportunity.  I didn't get any worse or better but due to the encouragement I started to exercise more and to eat better.  It shook me out of the attitude that I couldn't do much and made me feel more capable and better off.  I would gladly do it again.

                                     rare quail telegraph.co.uk

The Tremendous Effort To Look Normal

At the MedCity ENGAGE Conference recently Dr. Victor Montori made this statement about chronically ill patients. "They look normal because of their tremendous effort to look normal."

@AfternoonNapper alerted me to the closing speech of this conference given by Dr. Montori, whose name is strongly associated with the concept of the  "burden of care" that is shouldered by chronically ill patients.  I am sure that all of you with one or more complicated conditions said at this point "I know exactly what you mean by that."  @AfternoonNapper also says "Montori has emerged as a general in the Spoonie army"

                                             General of the Spoonie Army            AMcKinnon

Another term that I had never heard until I started to read medical papers and articles was CCC which stands for Complex Chronic Conditions.  There are few organizations that acknowledge this reality and the efforts necessary for patients who are trying to do less and still maintain good health.  I found one example in BridgePoint Health, as an organization that is trying to use a new strategy to deal with these issues by using "nimble and flexible" strategies through collaborations that put the patient at the center of care.

We need to try to advance to minimally disruptive care with patient centered strategies and it is possible to do it.  As an example: I went to a hospital once for pre-op appointments and instead of being sent all over the hospital there was a central core area with patients in little rooms all around the room.  The various blood tests and info gathering that had to occur were done by a team that circulated around the perimeter with great efficiency as the patients waited in one place.  That's a pretty basic example yet it made the afternoon of appointments so much less stressful.

                                         Patient centered care (me in the middle)

The issues of compliance and concordance in my last blog post could be improved by making the care process easier and more coordinated.

I was working on this post for a few days and I went back to twitter to see what Afternoon Napper had been saying, only to see this link at the top of my Tweet stream. Re-imagining Healthcare: The Northwest Territories Transitions to an Integrated Chronic Disease Management Strategy. Since chronic disease accounts for 70% of deaths and 50% of hospital stays in that area, a new strategy for dealing with chronic disease is seen as necessary and this paper details efforts in the Northwest Territories.

Unsurprisingly Afternoon Napper had a lot to say and pointed the way to another blog about Minimally Disruptive Medicine. I liked the Goldilocks synonym best of course. 

                                                         This porridge is too hot

In this interesting blog by Carolyn Thomas of Heart Sisters you can read more about burden of treatment and also on Marianna Paulson's Rheumful of Tips blog.  I did not expect to find so much information on this topic - clearly I am behind the curve.

The whole paper is here: Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.  

 

Diagnosis and Compliance Mostly

My first GP always said "if it's not broke, don't fix it" so my oldest son has an odd toe that has not caused him any trouble in his whole life.  But this is the same man who I blame for the slow diagnosis of my RA, so I don't fully agree with that philosophy.  "Broke" needs a definition to be useful.

                                 kootation.com

If I were as good at applying make-up as I am with eye drops and eye gel I would be stunning.

                                  merledress.com
My friend says: "The worst news that I have to date, is that going forward, there are no devilishly beautiful high heels ever again, and probably not even semi-attractive flats. Can a woman nearing seventy ever find happiness again wearing orthopedic running shoes?

Answer: Yes if she can happily walk around Italy and pretend the shoes on her feet have nothing to do with her."

In a recent study of ethnically diverse and economically disadvantaged patients with rheumatoid arthritis on oral therapy, the result was that only 21% had took their DMARDS at least 80% of the time.  This led to many headlines about RA patients not being compliant and following treatment plans.

My thoughts: 
Could money have been a factor? Even if they were given medications for this study might they have decided to save some doses and make it last longer into the future.

Those with better mental health were more likely to follow directions.  

Online I read frequently about the struggles people have in reducing their prednisone use. There are a lot of well known drawbacks to prednisone that lead many to attempt to reduce their dosage.
All of these DMARDS were oral. Methotrexate by mouth has gastrointestinal side effects. I can easily imagine circumstances that would lead to a skipped or mis-timed dose.

And chiefly: Why does a study of 107 diverse and disadvantaged patients in Texas lead to generalization in online medical resources about RA patients taking medications?

Here's another study about the medication adherence in RA.  
This one is a review of literature on the topic.  
I like the concept of concordance where two people are involved in the decision.

"In the mid 1990s, the concept of ‘concordance’ was born. The term ‘concordance’ relates to a process of the consultation in which prescribing is based on partnership. In this process, healthcare professionals recognize the primacy of the patient’s decision about taking the recommended medication, and the patient’s expertise and beliefs are fully valued"

Update on wrist fusion surgery

4 1/2 months later:
I'm still very happy with the results of the surgery.  I no longer have pain in my left wrist, which was the first priority, but I have also regained function that I did not know I had lost.  The beginning of the story is in this post about the fusion.

Here's a picture of my right hand when I try to turn it palm up.  You can see that I can't make it level, as you would if someone were giving you change.

                                          A. McKinnon
Now here is the left, after the fusion.  Before it was like the right wrist and did not turn palm up. (that motion is called supination) Now I can make it turn almost 90 degrees with my elbow at my waist.

A. McKinnon

It  took some work and exercise to regain that range but it was well worth it.  An added bonus is that I can type faster now.

I also have copies of the X-rays at the bottom of the post.  If you do not like to see X-rays then don't go all the way to the end.  Not everyone has an interest in the actual nuts and bolts (only too true) of orthopedic surgery.

This picture shows how well the scar has healed four months later, and a ring splint that I wear for a swan neck finger, in case you are curious about the silver ring.

                                       A.McKinnon

This hardware did not cause me any trouble at the airport.

Here is the link to the post about the actual surgery

The X-Rays

                                      A.McKinnon