Some pearls from the Sjogren's National Conference 2013

The round table discussions at the Sjogren's Society of Canada Annual Conference are very popular.  Here are some small nuggets I learned in the course of one question period.

Lichen planus is an autoimmune problem. It can be treated with MI Paste or baking soda and salt. This is the recipe: Eight ounces of water with 1 tbsp soda and 1 tbsp of salt. That increases the PH in your mouth. It has a tonic effect on the soft tissues. Unfortunately not the brain.

                                       flickriver.com

In Canada LU049 is the prescription code for Lacrilube if your doctor will prescribe. The LU stands for Limited Use. This is for people who can't afford it otherwise.

For your salivary glands it is “Use it or lose it”, based on a comment by Dr Athena Pappas.  Massage of the salivary glands helps you keep the function. Using Salagen also helps. With Salagen you have 40% more function.  The Sjogren's Syndrome Foundation shows how to do this massage here.

                                       dry river bed  abc.net.au
If you lose even 30% of the function of your salivary glands your mouth will feel very dry.

If you develop black tongue clean it and brush it. Then use an anti-fungal agent or Clin Pro.

You can use omega 3 oil in your mouth, though Dr Pappas prefers Vitamin E oil from the capsules for the tongue and mouth.

The conference was a mine of information and I will pass on more of what I learned soon.  It was also an opportunity to meet new people with similar problems and interests.

OA at the base of the thumb - Carpometacarpal suspension arthroplasty

When I went to see the hand surgeon recently his advice was the same as it had been five years ago.  He had told me then that it was not a good idea for him to operate on my thumb or my knuckles until my wrists were fused. This year I went ahead with a fusion on the left wrist.

The thumb operation recommended was a suspension arthroplasty.

You can see how the base of my thumb is squared off in the picture.  That is likely a result of osteoarthritis, which is all too common with rheumatoid disease.  My friend had an operation to repair one thumb last fall and the other thumb was repaired just last week.  Prior to the procedure she had a lot of pain with bone rubbing on bone.  She has shared her experience with me and I am telling her story.  Here is a picture of her hands with the right one after the operation and the left one still to be done. The pain in her right hand is much less now.

"The name of my surgery is suspension arthroplasty of the carpometacarpal joint of the thumb and there are quite a number of different ways to do it.  The doctor recommended it highly because there is no new joint, just removal of the one rubbing which was a small joint just below the CMC called the trapezium as well as part of the scaphoid and strengthening it by drilling a hole and putting a tendon through one of the joints to stabilize it.

My hand is pretty good now. Healing is progressing more slowly than at first and may never be perfect but I don't care because it is doing quite well without the offending joint. I have quite a bit more strength, dexterity and range of motion and I am grateful that there was a solution for me.

The doctor recommended against joint replacement for my thumb and it made eminent sense – there is no artificial joint, therefore nothing can go wrong or need replacement. He said suspension arthroplasty is an ideal solution for my problem.

                             OA in CarpoMetacarpal Joint  qwinerveprotection.com
After surgery I did have numbness on the top of thumb and it was overly sensitive from first joint down to wrist. That is lessening now.  The pain in the rest of my body is less since the operation and it makes me wonder if pain in one area makes everything else more sensitive; conversely, reducing pain in one area may reduce it everywhere.  It is worth hoping.

Other doctors I saw for advice had never heard of suspension arthroplasty for thumbs and didn't know what a good solution it has been; They recommended against surgery. 

                                               Grover,the grumpy Texan cat

I agree with the doctor calling his offer of surgery on my thumb a “treatment”. For the surgery, I had no alternative unless I wanted to live as a grumpy invalid. It was unpleasant to go through but the alternative was so much worse, the decision was easy. I’m sure I was as afraid of surgery as anyone. After three months, I have very little pain in the thumb and it’s almost completely functional.

Up with surgery and drugs! Down with pain!

I had a cast to the elbow with only the joints of my fingers free for three weeks and then a hard splint with similar directions for protection for another three weeks."


Links to more information:
Suspension arthroplasty is a term describing the use of a slip of tendon to reconstruct elements of the ligament supports of the base of the thumb. There have been many techniques described, but no published study shows a clear advantage of one technique over another for all cases. Most specialist surgeons working in this area do however prefer to reconstruct the ligaments, in the belief that for those patients for whom it succeeds, better overall strength is achieved in the hand for grip and pinch. This is still a developing area though.

CMC Arthroplasty of the Thumb: A Review

Suspension arthroplasty of the thumb carpometacarpal joint: modified surgical technique, follow-up treatment and results--a retrospective analysis of 51 operations

Rehabilitation protocol after suspension arthroplasty of thumb carpometacarpal joint osteoarthritis.

Enthusiasm For Biologics

I found a research paper called Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”   The research that went into this paper centers on patient experiences, attitudes and expectations about the information they receive before they start anti-TNF therapy. As soon as I saw the comment I loved it.  It made me think of my pre-TNF self.

                                www.the-rheumatologist.org Fatigue in RA
                                                   ACR/AHRP Annual Meeting 2012     

This was my experience making the decision about biologic drugs:
Six years ago I was managing to work full time and that was about all I could do.  When I came home from work I was too tired to do much more than lie on the couch and stare into space.  

I did manage to keep looking for information online and I read the results of the Premier Trial and others that were similar with great interest.  Among the articles I read, the conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage.

                                   news.com.au     Sense of Well-being

After reading these conclusions it seemed to me that life could improve with more aggressive treatment. Next I had to convince my doctor that this was necessary. With physical symptoms of fatigue and inability to expend energy my life was limited.

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If it had worked it would have been great but it didn't.

I really wanted to be taking something that would give me a better quality of life than I had at the time.  Over the course of Rheumatoid Disease I had tried almost every DMARD and most made no difference to my RA.

The study mentioned above was qualitative and the conclusions that were reached came from analyzing data and comments from focus groups. The people who participated made comments that made sense to me.  The study about patient's perceptions that talked about a sense of well-being was also qualitative, so that information came from patients as well.

Well-being is not something that is asked about in the Rapid 5 and HRQL (Health Related Quality of Life)  measurements.

Here's a quote from a rheumatologist on this topic: 
"In recent years we have been discussing the need for a broader approach to treatment--such as in addition to measuring disease activity, measuring structural changes and functional impairment--which may help physicians and patients mitigate further irreversible effects of the disease." said Dr Edward Keystone, Professor of Medicine, University of Toronto, Canada.

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

Forefoot in Rheumatoid Arthritis (RA)

With RA you may develop problems with your feet.  The first part of the foot affected is usually the ball of your foot and the toes.  

                                               fitterfeet.com
Before I knew I had RA and while I was looking for a diagnosis my hands and wrists hurt very much, but the most painful symptom of all was sore feet.  Even though I could barely get out of bed in the morning, I continued to think the underlying problem was just too much standing, walking or chasing after my children. 

Once I got a diagnosis I already had damage to the joints of my feet.  The balls of my feet hurt because the fat pads that cushion those bones had migrated. That pain is called metatarsalgia. To deal with this, when it is not bad enough for surgery, you can use a metatarsal pad in your shoes.  

                                     walkwellstaywell.wordpress.com

My toes had started to drift to the outside. This led to a lot of pain and great difficulty finding shoes.  I was always limping and my co-workers probably thought I was faking because one day the limp was on the left and the next day on the right.

My rheumatologist referred me to an orthopedic surgeon.  I had to wait for an appointment because I wanted to have a foot and ankle specialist as my surgeon.  It is a distinct specialty and they are in short supply. My friend had hers done by a general surgeon and it needed to be fixed again.

The doctor recommended a forefoot reconstruction.  It sounds dramatic and it felt that way too, even though it was only day surgery.

You can read all about this on Wheeless' Textbook of Orthopedics but you will need to look up a some of the terminology unless you are very well versed on anatomy.  I looked for pictures of my foot to show you but none of them looked like good examples.  Lots of pictures show bruises but there are no good before and after photos.

This was the first operation I ever had for RA and it made walking easier.  I almost wish I still had the shoes I used to wear so I could show you how they had changed to accommodate my feet.

                                       SophieCrumb.blogspot.ca

My closet has no cool shoes to gloat over.  New Balance is my preferred brand because I like a lot of room for my toes. I would rather walk well and pass for normal than limp everywhere. There is lots of room in my shoes for orthotics, which have been vital to keeping me walking well.

I have now had a forefoot reconstruction 3 times. The technique  has changed the from the first time it was done 20 years ago. In the operation as it was done in the 90's, the surgeons remove a lot of bone at the metatarsals and the lower joint of the toes. People ended up with what the doctors called "floppy toes". 

Now they use pins in the toes to let them heal nice and straight. That method does leave your foot looking much more normal.  In my case though, the toes did not fuse well on the right so I needed to have the surgery redone on the four small toes.

Overall I would have these operations again because of the pain relief that I got from the procedures.  

Here's hoping your feet stay fine.  It is inconvenient to be unable to put weight on your foot for 6 weeks, even though it doesn't hurt much after week 1.

Your mind vs your body

Sometimes you wake up and plan the things you want to do and your body does not agree with the plan.  It seems like your body is the bad twin while the angelic one in your brain is giving you goals to achieve that are good, sensible and forward looking.

It doesn't matter how much I tell myself it's not my doing, it's the RA.  Even though I have a good reason for rationing my energy I still have that sense of being haunted by the things I am not doing.  

Self preservation and pacing is necessary, but even after all this time I don't always convince myself it's true.  Deep down I still feel that I can do anything - it's just that when I do what I think I can do or should do, then I pay for it for days.

Too often before you can even make a good start on an activity your body quits on you. It has many ways of forcing you to do what it wants.  In fact it has the upper hand.  The brain may be the controller but the infrastructure (body) needs to be sound for you to carry on.

So while we sit where the body put us we can wonder about these points:

1. Do I get so little done because of the activity of my chronic disease?
2. Is the  illness worse and making me more tired?
3. If I exercised more would I have more energy?
4. Was I always lazy?  (Note: Reading and eating peanuts was my favorite pastime when I was 11. May have been a bad sign)

RAcanuck put this another way in her blog post:

 "After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and to get things done, it’s not a bad thing really unless you end up with AI disease. Then you're stuck on that mindset and your body is stopped in its tracks, the two don’t jive really."

Before you get too discouraged think of the points made in this article titled  Consequences of the inflamed brain

"sickness behaviors...are not symptoms of weakness induced by the infection, but rather are an organized set of changes designed by evolution to keep the organism (you) from foraging and thus being subject to predation during a time of weakness"

                                       care2.com
I also found another paper titled Fatigue In Chronic Disease which is helpful despite being published in 2000.  Fatigue needs more attention.

A Little Steamed about Somatic Symptoms

You may know that I read papers and abstracts on PubMed on a regular basis and every day I post a link to a research paper that interests me or seems relevant to current online conversations.  

                                                                 bmi-online.nl
When I found one called "Negative and positive illness representations of rheumatoid arthritis" it made sense to me that there seem to be two groups among RA patients. "The smaller group (43%) ... has a negative representation of their illness, attributed more symptoms to their condition and reported stronger perceptions of the consequences, chronicity and cyclicality of their condition, and lower control compared to the positive representation group (57%). (I'm taking chronicity to refer to whether the issue is chronic or acute.)

                                       thiran-muru-arul.blogspot.com

I wanted to be sure that I knew what was meant by the term "illness representation" so I googled and found this definition on the site of the National Cancer Institute. It is the "patient's beliefs and expectations about an illness or somatic symptoms" and determines how you cope with the illness.

So in the article about RA it seems some of us are more negative in our feelings about it. And the ones who are more negative have "higher levels of pain and functional disability and, longitudinally, with increases in levels of pain, functional disability and distress." 

That makes sense to me. It sounds as though the group with negative perceptions have good factual reasons for these feelings.  Their reasons are based on facts and on their actual condition more than on their beliefs and expectations.

It upsets me when a physical illness is associated with feelings that patients may have about it and turned around to a perception problem rather than an actual physical problem.  

                                    teachercarilla.blogspot.com

It's important to treat the body and also the mind but I'd rather start with healing the body.

I also found a lengthy neurology article about treating patients with no apparent disease, where the problems are functional.  It is almost a guide to What Not To Say To The Doctor in one section of this detailed article.

I found it at this link:  http://jnnp.bmj.com/content/76/suppl_1/i2.long  You may have to sign up for the BMJ  to see it.  (it's free)

Loss of Voice and Trouble Swallowing

There are many reasons for throat problems beyond the ordinary everyday issues. Lately I have seen blog posts about Rheumatoid Arthritis (RA) affecting the cricoarytenoid joint in the neck. One by Dr Shashank Akerkar and the other by Chronic Curve. 

                            Frank H. Netter   Atlas of Human Anatomy

It's also a subject that RA Warrior has written about more than once. She focuses more on how it can make your throat feel.  It means a lot to hear about the experiences of others.  I also found another article that states that with RA there is a lot of laryngeal involvement and that almost 13% of patients have dysphonia.

Years ago I was having a lot of trouble with pain in the throat along with choking, dryness, loss of voice and hoarseness.  I spent a lot of time on the Sjogren's World forum talking to others and finally found a person who was having similar experiences.  We thought, based on symptoms, that we might have LPR - that is Laryngopharyngeal Reflux (Silent Reflux).  We thought it was more desirable to have LPR  than Sjogren's because there are solutions to LPR.

We looked for information and good sites were scarce.  The best site we found had detailed information posted by Dr Jamie Koufman on the Wake Forest Baptist Medical Center site. Now she is at The Voice Institute of New York.  She has seen over 250,000 larynges which must be a record. Dr Koufman is very generous with information and comes across as very empathic person. 

I found another paper titled Laryngopharyngeal Reflux- A New Paradigm of Airway Disease which can add more facts for you if you are interested.

Armed with this knowledge I got a referral to an ENT (Ear Nose and Throat) doctor and had a most unsatisfying experience. He did not see inflammation, swelling or nodules when he looked at my throat by means of sending a tiny camera down through my nose for a look at my vocal cords.  So that ruled out RA and LPR both of which are usually visible to the trained eye.  This should have been good news and was since it narrowed the possibilities.

After that I had speech language therapy. The voice exercises and vocal hygiene sessions were some help to my voice which was very faint and undependable.  No shouting for me.

So that left Sjogren's Syndrome to blame. You can often recognize a Sjogren's patient by the bottle of water they almost invariably carry.
With Sjogren's Syndrome the lack of saliva in the mouth is a cause of trouble with the teeth and with throat, swallowing and digestion.

                                                                             Dry

A close friend has been Heimliched in public more than once for this type of choking.  Luckily the first time she was having coffee with her doctor and the situation did not alarm him.

Another time it happened at Costco. She has almost finished shopping when she was tempted by a sample of bruschetta.  When she started to choke she was unable to ask for help.   She couldn't breathe and she had no water.  The demo person and others helped her finally and she felt better but so embarrassed. They told her store policy was to call an ambulance so she asked them to wait and just let her go to the washroom first.  Then she abandoned her groceries and unobtrusively left the store.  She laughs now when she tells the story but then it was a panic situation. 

Luckily for me the problems improved, perhaps because of my use of Salagen.  I didn't find any evidence online that the use of a biologic is helpful for dry mouth, throat and swallowing trouble, but mine is better with Humira than it was without.  

                                         Salagen pills                   A.McKinnon



Other papers about LPR
http://www.ucdvoice.org/lpr.html  Centre For Voice & Swallowing at UCDavis Health System

http://www.enttoday.org/details/article/531839/Laryngopharyngeal_Reflux_Gaining_Recognition_as_Distinct_Disorder_Paving_the_Way.html

http://www.enttoday.org/details/article/531839/Laryngopharyngeal_Reflux_Gaining_Recognition_as_Distinct_Disorder_Paving_the_Way.html  

The paper below sees some benefits of TNF inhibitors in ocular inflammation.
 http://www.ncbi.nlm.nih.gov/pubmed/23568177     TNF Inhibition for Ophthalmic Indications: Current Status and Outlook.

An Ear Nose and Throat song

Hurt, Hurt - RA Playlist

Many of us have pain as a common thread in our conversations.  Hence the title of the post. It comes from Runaround Sue, an oldie by Dion and the Belmonts, and the best Hurt song ever.  

Listening to music is a good way to take your mind off of your body for a while. In fact music is an inspirational plus while writing blog posts.  It doesn't work as well when I try to understand a complex scientific paper unfortunately.  These days focus is more necessary than multi-tasking.

With chronic disease how many of us do not wish for Yesterday?  If only We Could Turn Back Time we think we'd be a lot happier.

Hurt So Good is an unknown concept in the RAD community, Misery is more apt.  For those with neuropathy Needles and Pins might be the song of the day.

                                            Needles and Pins - Neuropathy

Don't try to tell us that Everybody Hurts. That does not go over well: in fact it's a pet peeve. What we really have is All The Things You Never Wanted.

                                Things I never wanted in my house

What we hear from well-meaning friends is Don't Worry, Be Happy. They think that's a sure cure for what ails us when we Haven't Got Time For the Pain.

Really, the King of Pain is after us and we are trapped in a Sea of Heartbreak.  OK, that's a little dramatic. All we have to do is go Off To See The Wizard (rheumy). Hopefully then we'll be Feeling Good.

When that doesn't work I Fall To Pieces and wish for Novacane or  Dilaudid. (Note:Those are not my painkillers of choice, nor are they recommended).

We need to take The High Road so we don't Lose It and go Sliding Down the Crooked Road.  And here we are planning to exercise and the best we can do is Once Around The Block.  Even though we're younger we'll never have the Moves Like Jagger.

And for the final illness indignity All the Money I Had Is Gone.  We pay quite a price to coexist with chronic problems.

                                        guardian.co.uk

I'd say that What Doesn't Kill You makes You Stronger isn't  accurate with RAD. Physically you often lose strength.  Mentally it's hard to judge your own strength but we always hope for a Beautiful Day.