Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said "Why aren't you doing the injecting yourself?"  A classic "Had I But Known" was my answer.  If I had had the faintest hint that I could have been doing it on my own I would have.

This author was one of the queens of the HIBK (Had I But Known) genre

That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many hours I wasted and how much money it cost the health care system was enough to turn me into an advocate for change. This number of unnecessary visits is a healthcare horror story. The lack of a short conversation not connected with direct symptoms, and a patient who didn't know enough to question the status quo produced this result. 

Now I aim to be an empowered patient capable of managing most of my care with a minimal amount of help.
After making a major long term effort to educate myself, to learn more about my health issues and to find out how the healthcare system and people in it work I can manage this with some help and support. 

Patient centered care

A source of support I found in addition to my doctor is patient communities. They have been a good source of reliable information. One group I've been in for ten years has many experienced patients whose stories are similar to mine. As an example when I asked them about effective treatments for mouth sores they had good ideas. I suggested one of these to my doctor and although it was new to her after looking it up she prescribed it - a great choice and it worked almost overnight.  It helped me to feel that I am now able to collaborate with my doctors. 

The old me would have meekly gone home and tried the mouthwash she initially suggested that was actually contra-indicated because of my Sjogren's Syndrome. That would have led to a repeat visit. 

Things are working well now but I fear starting over when my doctors retire (all of them are over 64) and I have to build new relationships. 

Authentic Beatles Pencil case (When I'm 64)

Things Are Different At The Doctor

This week I had to go to see my GP doctor for a visit because I have been upping my dosage of methotrexate (MTX) to the maximum. (doctors' orders) It was a bit difficult to find a way to manage this but I did. The only problem that arose has been the development of stubborn mouth sores that the usual treatments did nothing to help.

                                          injectable methotrexate

To prepare for the appointment the first thing I did to find information was to ask fellow members in an online RA group about treatments they had used successfully. I got this answer "My primary care physician prescribed a paste called triamcinolone .. that seems to work overnight for me.  I think it came in a 0.1% paste.  It really helped  me. I put it on right before bed because it is pasty and gritty...but did the trick." 

Next I checked Dr. Irwin Lim's blog called BJC Health's Connected Care. He's an Australian rheumatologist who practices in a team setting in Sydney, Australia. I knew that one of his most popular posts ever was about methotrexate, so after reading it again I asked him about mouth ulcers and MTX in the comments section. He said he uses folinic acid and sometimes lowers the dosage in his patients. 

                                          At the doctor

That meant that when I walked into my doctor's office I already knew a lot about the issues and possible solutions. These prior interactions gave me an understanding that seemed to be well founded.  When the doctor suggested trying an alcohol free mouthwash I was confident enough of my information to request what my friend suggested and others validated. 

Thank goodness I did not have to try to convince a friend who is in healthcare that it was a good treatment. She's a skeptic who said "The sores were probably getting better already" when I told her how well it had worked.

Thinking back to my past history of doctor visits I used to be ready to accept the first solution or idea presented. In some cases that led to more visits. Being a meek and uninformed patient seldom helped me.

Being an active participant in your own care may come naturally, but it was a skill I had to learn. Reading online journals, articles and about the experiences of other patients in forums and blogs helped me to gain confidence in myself. Now even when I'm not asked I join the discussion and ask questions as well.

                                        Strong and active patient

With this collaborative approach I see my doctor less often. It took me until now to notice how much of a change there has been from the early days. This week it seemed so clear that things were different.

Here is what Stephen Wilkins says about two different ways of looking at what is popularly called patient engagement (which means the active involvement of the patient), and who benefits from these approaches. His ideas about two outlooks he has observed in health care ring true to me.  Are we engaged as patients "to advance our activation, quality of care, clinical outcomes and the patient experience" or is the intention to make us a source of cheap labor?

We'll keep our eyes on that issue.

 

How To Develop Chronic Patient Syndrome

There are many stories about waste in healthcare. Some are ridiculous and some are based on misunderstandings and lack of knowledge.

Here's my waste story: While I was being treated for RA, injectable methotrexate was prescribed for me because the pills caused too much nausea. The shots were intramuscular and I assumed that I needed to have a doctor administer the injections just like with gold shots.  

So every Wednesday afternoon I would leave work early, go to the doctors office, park and wait (and wait). This went on for seven years. That means 364+ extra doctor visits and at least 1000 hours of my time that was wasted. Not to even mention the white knuckle winter trips.

                                    www.transportation-tech.com

My rheumatologist then happened to suggest a clinical trial.  As part of the start up process for it I met with a nurse for an interview and in the course of the discussion she asked why I did not inject myself. Thank goodness she did. 

I had seen at least 10 different doctors in those 7 years, allowing for travel, locums and vacations and not one of them said a word about this possibility. At last I was spared the weekly visit!

That is why I suggest that in some chronic diseases there should be a resource person or advice line, ideally staffed by a nurse who has the time to discuss treatment choices, possibilities and ways to make life with a chronic disease easier. If it had not been for that one nurse a lot more time and productivity would have been wasted.

Lego Nurse

This new service would give non urgent sensible advice to patients with chronic illness online or by phone. Of course the answer may often have to be "Check with your doctor" but even that is a helpful answer because you have an opinion on the relative seriousness of the question.

And with a few stories like mine resolved every week the position would pay for itself.

Of course seeing my doctor for those hundreds of extra visits has led to us having a very good relationship based on my chronic patient syndrome. Yes, you develop that "disease" by seeing the doctor often.

Patient View of Humira

When I first developed RA the treatment plan given by my Family Doctor was to take a maximum dose of aspirin (12  pills a day) for a three months to see if that would have a beneficial effect. Over those months damage continued to occur. Since this treatment did not seem to make a difference I found another doctor. His treatment was NSAIDs, specifically Indomethacin: That resulted in gastro problems added to the pain, swollen joints, weight loss and fatigue.                     

                                   

When I finally saw a specialist over a year later he outlined the possibilities  The most aggressive treatment was in his Pyramid of Possibilities was immune suppressant drugs.  I was prescribed gold injections and then transitioned to methotrexate.  Over the years the methotrexate was combined with almost every other DMARD (disease modifying anti rheumatic drug) possible.  I kept trying all the combinations hopefully over the years until I became more involved and informed about treatments and possible choices. 

Once I was aware that methotrexate does not actually stop damage to the joints and found out there were other choices that did stop joint damage I campaigned for treatment with a biologic drug. In my reading I had learned that biologics produced a greater sense of well-being and a better quality of life at the same time as they stopped progression of damage. 

I saw the info above in online CME (Continuing Medical Education) courses during the time that pharmaceutical companies were the major sponsors of many of them. Reports of drug trials like the PREMIER Study and ARMADA were a further influence on my desire for biologics.

I combined this knowledge with the facts of my life.  I was working full time but all other areas of my life were neglected because of  pain and fatigue.  Most of the time I was not at work was spent resting up to be able to continue to work. My exercise tolerance was very poor. It used to take me two days to recover from any efforts beyond isometrics. Now with Humira my recovery time from exercise seems normal and I am able to do more in a day than just work.

There has been great progress in the treatment of RA over the past years. Prior to 15 years ago there were only 7 new treatments found in 70 years. Now it is hard to keep track of all the new alternatives. The improvement in treatment is noticeable even by the look of the people waiting at the rheumatology clinic. No wheelchairs and very little visible damage can be seen now.

Some of my friends in online groups have had moderate or serious adverse effects that have led them to discontinue biologic drugs. However at least as many have said that a biologic has given them their lives back. That is important!  Even if my improvement on a biologic is not remission and amounts to me feeling 20% better it’s a welcome change.  

Progression is the major factor in my choice. I can’t afford to have any new joint damage. While only one active joint may sound like good control to many, when that one joint fuses it’s useless for good and the disease moves on to another one. There are no miracles in RA that unwind joint damage.

Over the past 7 years that I have been taking Humira I have been sick 4 to 5 times with colds and flu and the severity has seemed worse but not the frequency. 

I did express concern about the price before I started to use adalimumab. The “payment specialist” with the organization that Abbott uses to distribute the drug looked into methods of payment to lessen the financial impact. That organization paid my deductible for the first year to make the  transition easier.  It was a good investment for them seeing that I am still taking it after seven years.

I have been influenced by this great talk by Dr Edward Keystone called The Most Exciting Time Ever In The History of Arthritis and by Dr Shashank Akerkar's blog post called Time, tide and inflammation waits for nobody.

The choice of Humira as my biologic was mine. The Dr. I was seeing gave me a choice of the 3 major anti-TNFs. I had concerns about one and chose Humira based on the ease of use and my schedule.

Despite my enthusiasm for effective treatment I am anxious to see full disclosure of significant risks through the release of data from clinical trials. The legal action blocking disclosure of trial data by pharma companies Abbvie and InterMune is a step backwards for patient safety. There is a petition here against the lawsuit.

Their lawsuit has shut down the whole public access program of the European Medicines Agency.  Patient safety is not a trade secret! To paraphrase @ePatientDave "Give us our damn data."

If we are choosing to take these budget busting drugs we should have access to data about them.

You Look Sick

Though it is frustrating to have people say that you don't "look sick" with your invisible illness, imagine the opposite.  Frankly my ideal would be a "You look marvellous" comment made to me and my healthy body. 

                                      www.musicstack.com

My good friend, who I have never met in real life, has had news that her health is worsening.  I call her my RA twin because we are alike in age at diagnosis, RA affecting our hands and feet, and Sjogren's Syndrome.  We're also nearly the same age now.  She has had a lot of doctor's appointments lately and here is her reaction to reading her file.

"...I got copies of all the tests and reports that the clinic is sending to my primary care doctor.  Well, on the notes under General Appearance the hep noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of r/a can make you look sick. I'm sure I will mention this to him when I have my appointment in May.  I mean, there is another way of saying this, isn't there?"

So that's part of the downside of reading your medical records.  Comments that veer from being strictly medical are the sort of thing that you just don't forget.  I had a similar experience when I was first diagnosed. I opened my file and found myself described as a pleasant woman who was "somewhat obese."  I was shocked.  It was a "there's a pain that's going to linger" moment.

                                    Ed Grimley at CrazyCramers.blogspot.com
Some of our medications may eventually take their toll. My friend now has early cirrhosis and lung issues.  

Of course this may be a lack of preventative care through the course of the disease, but her pulmonologist and hepatologist are saying that methotrexate is the most likely reason these new problems have developed.  That won't stop me from taking my medications but I think now I will start being more suspicious of what I would usually dismiss as just the flu or a cold if it persists.

                                      methotrexate en.wikipedia.org
In my quest to educate myself I found a number of terms that have made me uncomfortable or angry.  One has to do with surgery for RA hands and feet.  It was often referred to as "salvage surgery" and I see the sense in that, but my first reaction to seeing the term was anger and discouragement.

Chronic disease is not for weaklings, and we know it.  We have to adapt and deal with things we never anticipated coming onto our radar at all.

                                        en.wikipedia.org
I've got a long history of surrounding myself with toys and cheerful things.  That's why the next picture is a beautiful chicken.

                                         Polish Chicken

The language of medicine. An article from PMC

Progression of Damage and Why It matters

Damage to your joints sounds so academic and unlikely when you first get a diagnosis of inflammatory arthritis (or Rheumatoid Arthritis Disease). Even though joints are painful and swollen it's hard to believe that your bones will be affected.  I developed RA at 32 and took having good health for granted then.  There was no time to be sick with two boys 10 and 11 and a job.

                                       Anetto archive

You start off as normal healthy person and Rheumatoid Arthritis comes sneaking up on you gradually in most cases.  You start to notice pain and fatigue.  Your joints hurt and you feel so awful, and yet you still wonder  if you're sick or is it just life catching up with you? But now the effects are hitting you like a ton of bricks. My doctor thought I was dramatizing and hysterical so the process of finding the problem took longer.

                                www.cropthornehouse.co.uk

But finally you have a diagnosis and start on methotrexate, the "gold standard" drug. You have to wait to feel the effects and they creep up on the RAD just like it crept up on you.  Finally you start to feel the drug is working. The pain and fatigue ease up and you can function better bit by bit, even though nausea and gastro effects may make you feel like crap. (And this is a good result) 

(note: injecting MTX is easier on the stomach than pills)

And you are happy that your joints are not swollen and there is less pain and fatigue.  Your normal/old life is hard to remember but you feel better and that's some relief.  However from my reading and the evidence of my own joints after years on MTX, damage to your joints may still be occurring. 

If you were to look at X Rays it is easy to see the difference between a normal joint and one seriously affected by RAD

                                     www.paincaredirect.com

Normal joints have space between them and you can see 8 separate bones in the healthy wrist.

I was shocked to find out after years with RA and MTX and assorted other Dmards that MTX does not stop damage to bones from occurring.  Your symptoms may improve with that treatment but it is no guarantee that your bones are not being eroded and that your joint space is not narrowing.

For years I thought that I was on the best treatment and did not think I needed a biologic drug.  That was before I saw information about new clinical trials and read that with a biologic there is a lot less joint destruction.

As an example the Premier Trial concluded that   "ADA+MTX (adalimumab + methotrexate) inhibited both JE (joint erosions) and JSN (joint space narrowing) progression independently of disease activity. JSN played a more prominent role in patient-reported outcomes than JE. Preventing the onset or worsening of JSN probably represents a critical aspect of effective disease management of early rheumatoid arthritis patients"

And here "Early intervention with combination therapy also offered substantial protection from radiographic damage compared with methotrexate monotherapy." 

                                  MTX Right/Folic acid Left

Dr Haraoui says this in an editorial from Annals of the Rheumatic Diseases
"Indeed regardless of the therapy used, approximately 50% of patients will not show radiographic progression over 2–3 years; This percentage increases up to 75–85% of patients receiving combination therapy, and those who do progress, progress less than patients on methotrexate alone."

There are many reasons that I have a lot of damage to my joints. Some is due to late diagnosis of course, but 20 years on MTX, even with other associated Dmards, was not enough to stop the joint damage.  By the time I had a wrist fusion the Dr could not distinguish the eight separate  bones and said there was no cartilage at all in the joint.

When you end up with this much damage there are many things that are difficult or painful for you to do and some things are just not possible anymore. Damage leads to disability. "The association between joint damage and disability in rheumatoid arthritis (RA), especially in the later stages of disease, is a main reason why radiographic joint damage is a common and valid outcome measure in RA clinical trials"

                             Structural Damage www.ehow.com

Here is one of the main goals of rheumatology treatment:
"The primary goal of treating the patient with rheumatoid arthritis is to maximise long-term health-related quality of life through control of symptoms, prevention of structural damage, normalisation of function and social participation." 

The treatment is now much better and the levels of damage to joints have decreased over each decade. The level of disability is decreasing over time with good treatment.  That's the good news