RA, Sjogren's and Dental Implants

People with rheumatoid arthritis know, or ought to know, that it affects their bones. Of course the effects on the joints are the first thing you think of. I knew that  but unfortunately it did not cause me to realize that all of my bones might be at risk. Osteoporosis came as a real surprise 15 years after my diagnosis, and now I take calcium and Vitamin D and exercise more.

But it gets worse. With a diagnosis of Sjogren's Syndrome you suddenly find that your teeth require a lot more attention. Sjogren's causes dryness of the eyes and mouth - those are the two most famous and obvious symptoms. That lack of saliva in the mouth is very bad for your teeth. I have at least one acquaintance who just gave up and had all of her remaining teeth removed and got dentures.

You would have thought that was a good solution but it turns out you need saliva to keep your dentures in place and to make them feel comfortable. 

The next possible solution for the teeth problem is implants. I heard a very enthusiastic dentist say implants are great and will solve all of our problems. So far losing has not been an issue, but as I have been mulling this over, all the RA bone quality issues came into my mind. Now I am wondering if the quality of the bone in the jaw with RA is good enough to sustain implants. It probably varies from person to person. 

This is a story from Julie in an online group where we are both members

"I just saw my dentist a few weeks ago and he again suggested a dental implant.  On further examination of the X-rays - he changed his mind.  He is also concerned about the RA and my age.  Like Polly has said before - "I scare doctors".

I really don't know whether to try one or not.  I don't want to get in a bigger mess - if you know what I mean.  The Oral Surgeon that had a good look at the bone structure when he was extracting the tooth and the cyst was the person that said I didn't have enough bone.  He said I would need a bone graft and that didn't sound pleasant at all. He didn't know if it would even work, plus it would take a year to heal."

That leaves all of us with RA and Sjogren's with some tough choices to consider in the future.

BrookburnPrimary.net
 

Comment from Jean Nov 16/14:  I have had bone grafts 3 or 4 times, mostly related to implants. They have all worked. They grind up bones from cadavers, sterilized of course. It may take up for a year (I seem to remember 6 mths) for the bones to meld together so that you can complete the implant but that’s no big deal. I don’t even remember how they inserted the bone; possibly it was ground up enough that it happened through a needle and syringe, but obviously that wasn’t a problem since I don’t even remember

Where's the Good News?

In many people who have rheumatoid arthritis (RA), other autoimmune diseases like Sjogren's Syndrome can develop. I noticed an abstract of a paper that was published last month in Rheumatology. It was titled "Clinical characteristics of RA patients with secondary SS and association with joint damage"

As you might guess from the post title, the conclusion was that patients with RA who also developed Sjogren's had worse joint damage suggesting that secondary Sjogren's is a sign of more aggressive RA.

I keep wishing that some day there would be a discovery that would help people who already have joint damage and save them from its' effects. It's true that prevention is the most effective method of all to save mobility, and online I have often told people who are nervous of drugs suggested by their doctors, that drug side effects are preferable to damaged joints.

It's hard for people who are newly diagnosed to realize this. In the waiting rooms of rheumatologists across the country you rarely see people with obvious deformities any more. This was pointed out to me recently by a rheumatologist I met. She said to her associates "We seldom see hands like this anymore."  With that statement alone the benefits of new treatments discovered in the last 20 years are highlighted.

For early arthritis, as long as primary doctors recognize the signs of RA and send people to a rheumatologist quickly the effects can now be minimal. That's a challenge when you realize that in Canada we have 1 rheumatologist for every 100,000 people. Access is a lot better in a big city than it is if you live in a remote area. Another issue is that with only 1% of the population having RA it is not common for GP doctors to have much experience with it.

Here's a poster that was distributed to primary doctor's offices in the UK to help raise awareness of the signs of inflammatory arthritis.

ArthritisresearchUK.org

It's a good idea to raise awareness in any way possible. If posters like this can be seen in Doctor's offices it also helps with patient education. (Note: The symptoms shown in the poster also occur in the feet. There are many variations in the way people are affected by RA at the onset.)

When information is shared it has twice the value. 

So here's the good news! Better treatments are helping many people now. The treatments are due to scientific discoveries and now we are even able to imagine the day when gene testing will be able to predict how we will respond to treatments.

Taking control Part 5 - Dr Cindy Marek: Oral Health

Dr. Cindy Marek is a Dental Pharmacist at the University of Iowa in the Department of Oral Pathology, Radiology and Medicine. Her presentation was titled "Strategies for Oral Health and Comfort in Sjogren's Syndrome"

Dr Marek at the round table discussion

The practical advice she is able to give because of her experience as a clinical pharmacist specializing in dental pharmacotherapy can immediately be put to use. She explained to us how modification of lifestyle, medication administration and careful selection of over-the-counter products may lessen dry mouth symptoms and improve oral health and comfort.

She talked about how easy it is to overuse lip balm. She suggested that if it really worked well it would be impossible to sell as much - this design flaw is deliberate. The best product to use for dry lips is one that contains HPA modified lanolin. One product you can use is Lansinoh. It is sold as a product for use by nursing mothers so can be found at many drug stores as an over the counter purchase. 

Don't hang your lips out to dry

It is also a good idea to protect your lips in cold weather by using a scarf and also to make sure there is enough moisture in the air by using a cool mist humidifier. You need a sunscreen in your lip balm because you need to protect the thin and sensitive outer layer. It's a good idea to stock up in summer since it is a seasonal product.

There are over 500 medications that can affect oral dryness (xerogenic agents). These include antihistamines, antihypertensives, opiods, muscle relaxants and psychotropics such as antidepressants and antipsychotics. For the antihistamines she pointed out that products containing diphenhydramine (like Benedryl) are more drying than those which contain loratidine (like Claritin)

If you need to take a medication that has a drying effect sometimes taking a smaller dose, or perhaps a lower dose more frequently will help. Many healthcare providers are not aware of the incidence of dryness with certain drugs. Pharmacists are good resources for this information but of course you should consult your doctor about changes in medication dosages.

All stimulants are drying - this includes caffeine. Most of us are unaware of the amount of caffeine we consume. If you decide not to drink any more beverages with caffeine go slowly - caffeine withdrawal will occur if you stop suddenly.  Even gradually reducing the amount by 10% a week can help you.

I was surprised to learn that only added caffeine must be listed on labels in the US. If a product naturally contains caffeine the amount is not listed. Look for guarana, yerba mate, chocolate or coffee flavoured foods - they will contain caffeine. Even energy gummy bears have caffeine. 

From Vat19.com

Other things to avoid are alcohol-containing mouth rinses, acidic foods and beverages and toothpaste that contains SLS (sodium lauryl sulfate) which can cause tenderness and ulceration in the mouth.

According to a 2011 Cochrane review there is no strong evidence that any topical therapy is effective for relieving dry mouth. Oxygenated glycerol triester (OGT) spray is more effective than an electrolyte spray. 

In some studies chewing gum was the preferred product of patients. Chewing does stimulate saliva flow: the best gum choice is sugar free and contains xylitol or a xylitol/sorbitol mix. Cinnamon and strong flavours should be avoided

Another suggestion was MI Paste, especially at night, to give a good slick feeling in the mouth. 

Dr Marek also said "The burn is bad." If what you are eating or chewing gives you a burning sensation in your mouth, it's best that you avoid it.

Taking Control Part 4 - Sjogren's Conference - Dr. Rookaya Mather: Dry Eye

Dr Rookaya Mather is Associate Professor of Opthalmology at the Ivey Eye Institute at the University of Western Ontario and Department of Opthalmology and a researcher specializing in Cornea and External Eye Disease in London Ontario.

She chose Sjogren's Syndrome and Tear Film Dysfunction as her topic. Dr. Mather defined dry eye as a multifactorial disease of the tears and ocular surface that results in discomfort, visual disturbance and tear film instability with potential damage to the ocular surface. It is accompanied by increased osmolarity of the tear film and inflammation of the ocular surface. This is the definition of dry eye from the International Dry Eye Workshop (DEWS)

This can be very disruptive to your life. It has an effect on your quality of life that is similar to moderate angina. It's possible for dry eye to be caused by drugs or a serious lack of Omega-3 as well as by Sjogren's Syndrome.

Nitro for angina

In Sjogren's patients with severe dry eye researchers have seen on biopsy that 50% of the glandular cells are still present. This emphasizes the importance of immune factors in inducing glandular dysfunction. 

Another contributing cause for dry eye can be Meibomian Gland Dysfunction (MGD). With Sjogren's there is a decrease in expressibility that leaves the lipid layer deficient and lets tear evaporation increase. When this happens your tears become very concentrated. This promotes inflammation. For some people warm compresses and eyelid massage help with MGD.

You may also see redness on the eyelid margin. This is a sign of Ocular Rosacea. The inflammation on the ocular surface is thought to be mediated primarily by CD4 cells.

You need tear film on your cornea at all times for protection or your corneas may break down. When you use eye drops you should avoid drops containing preservatives.  BAK is the worst one and it is also found in glaucoma drops. Autologous serum tears are the closest to natural tears.

She's got Botticelli eyes

As your eyes become more dry, ocular findings worsen. There are some types of eye wear that help reduce the flow of air over the eye that preserve the tear film.  These include wraparound glasses and cycling shields, Panoptx, plano glasses or the scleral contact lens. You need to be especially careful to moisturize at night since tear production drops then.

Dr Mather ended with more good advice. Number one was "Be proactive, not reactive." Sticking to a daily care routine is essential. When you read close your eyes after each page for a few seconds more than a blink.

This is the comprehensive strategy to manage dry eye in 5 points:
1. Tear supplementation
2. Control of inflammation
3. Reduce evaporative loss
4. Support meibomian gland function
5. Prevent disease progression

Omega-3 capsules with fish pictures

Lifestyle factors can help. She suggested 2000mg of fish oil daily, use of lubricating eye drops, lid hygiene, warm compresses, possibly punctal plugs. Also consider flaxseed oil . Another idea that was new to me involved rolling a small bottle (like a pill bottle) full of warm water over the eye for a warm massage.

You can find more information about dry eye here at Dr R. Fox's site and more info on compresses for dry eye at this site which I found through dry.org. It also mentions eyelid massage.

Taking Control Part 1: 2014 Sjogren's Society of Canada National Conference Dr Arthur Bookman: Sjogren's Overview

The 8th Annual Conference got off to a good start with comments from President and Founder Lee Durdon. She has been responsible for all of the conferences to date and they just keep getting better.

For the last two years the conference has been accredited as Multidiscipline CME/CE so we have started to see more doctors, dentists and hygienists among the attendees.

Lee said that Sjogren's is like an iceberg.

The Titanic reminds me of icebergs

On the surface there does not seem to be much happening, but the person with the condition knows that they have been besieged. Taking control seems impossible, so we hope the education and connection provided by the conference helps patients to develop a sense of optimism and empowerment.

Being able to cope better with this immune system gone wild is an enabling experience.

Dr Arthur Bookman's talk started the day. He called it "More Than a Nuisance". That is certainly a good description of our own personal iceberg experiences with Sjogren's. 

Dr Bookman is the Co-Chair of the Medical Advisory Board of The Sjogren's Society of Canada. This group of experts advises the Board of Directors and recommends scientific and research goals for the Society. You can see the member's names on the website of Sjogren's Canada.

Dr Bookman starts the conference yearly with an always updated "Overview of  Sjogren's Syndrome".  Of the patients seen at the Sjogren's Clinic that he oversees, 76% had a delayed diagnosis, most often because the healthcare professionals they saw were unfamiliar with the disease. This is the case even though most patients had already seen four professionals before being diagnosed. With numbers like that it is easy to see why our Society feels that increasing awareness is so important.

Dry eye and mouth is worse than it sounds

Dr Bookman also told us that 70% of clinic patients have dry mouth, 60% have dry eye. The diagnosis of secondary sjogren's syndrome may on the way out. Now patients with another autoimmune disease like rheumatoid arthritis, are described as having Sjogren's as well as RA.

One tip he gave us was to massage the salivary glands daily to avoid having them become painful and swollen. His instructional slide for this was by Dr Ava Wu, like this one on the Sjogren's Foundation site.

One hopeful sign for the future is a small trial that seemed to be successful. It describes an allogeneic mesenchymal stem cell treatment that had good results and no adverse events.

There's always a mouse - NOD or ICR?

Sjogren's is a medical syndrome with no one defining element or gold standard test. There are 6 criteria including dryness of eyes and mouth and 4 of them have to be met for a diagnosis. One of those 4 must be a salivary gland biopsy or a blood test for the Ro (SSA) or La (SSB) antibodies.

It is always interesting to hear about the Devins Illness Intrusiveness Scale in which patients with various disease rated the issues they face daily. Sjogren's ended up being almost the same as Multiple Sclerosis in terms of effect on quality of life.

Dr. Bookman at the round table discussion


Through trying to find Dr Ava Wu's slide for salivary gland massage I found this, in case you want to read about Sjogren's at a high level.
Sjogren's Syndrome book chapter  by Dr Ava Wu, Dr John Whitcher and Dr Troy Daniels
Head and Neck Manifestations of Systemic Disease  It's Chapter 2.

Links to Sjogren's posts from the past:

Part 6. Immune System Gone Wild. Dr MiriamGrushka and Dr Lisa Prokopich

Part 5 Immune System Gone Wild Dr Susan Abbey 

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay 

Part 3 Immune System Gone Wild: SjogrensNational Conference 2013 Dr Bruce Jackson 

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

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

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

Blogging and Connections

When I started to blog I gradually realized that I had good practical tips learned through being a patient with chronic illness for over thirty years. That's the first reason I blog and share details of my own health on social media.

I jumped in head first

As a patient I had already discovered that the best way to find the in-depth learning I needed was to talk to communities of patients. Sjogren's World helped me to realize I had Sjogren's Syndrome long before I got a diagnosis. I joined a yahoo group of people with shingles who held my hand and supported me with information from their experiences. In another more social group, after ten years we share the good and bad as life goes on. 

On the #MedX Engage/Empower course and Twitter discussion on February 20th, 2014 I heard Gilles Frydman @gfry and Roni Zeiger @rzeiger talk about the way patients form networks of microexperts and "amplify the collective intelligence of the members."

I think that's what we're all trying to do with our blogs. Add another voice to the rivers of patient experience that are starting to grow in strength and power. The current is moving away from the patriarchal hierarchy where health care knowledge is held by a few. 

You never know who your audience is

My life with chronic disease developed in the usual way. I started with pain, depression and feeling that I was weak and unable to fully participate in a normal life. It was not possible for me to have a full life in all of the areas that were important. If I worked full time then social life, career development and even family would suffer due to lack of energy. I proceeded like this for years - my doctor said my RA was well-controlled but obviously the lack of energy affected my life so his version of "control" did not match what I expected.

Love to give directions but hoped for more energy than an inukshuk.

But there were some turning points - when I successfully advocated for treatment change and another when an offhand compliment encouraged and even energized me.

Now I have adapted to the life I have and the results have been unexpected and positive.

The second reason I blog and share on social media is that I benefit too. This statement from the research paper below really makes sense to me.  

Communicating the Experience of Chronic Pain and Illness Through Blogging  by Pamela Katz Ressler, RN, MS, HN-BC,#1 Ylisabyth S Bradshaw, DO, MS,#1,2 Lisa Gualtieri, PhD, ScM,#2 and Kenneth Kwan Ho Chui, PhD, MS/l

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

It's all about the connections. There's no other way possible to connect with such a great group of people involved with and interested in health care at every level.

Connections

This post is part of a blog carnival: "Why do you blog or share through social media about your illness?"

http://restoringqualityoflifeblog.org/2014/03/05/blog-carnival/

Here is a link to a previous post that I called Fruit vs the Blog exploring the question of which is better for your health - eating fruit or blogging? Of course there's no way to compare.

A Day In the Life

The members of the support group I've been in for ten years were thinking about Rheumatoid Awareness Day which occurred this week. In talking about A Day in their Lives with chronic disease some memorable comments came up.

Rosie says "One that you can't avoid considering is the extra diseases we have to deal with. Sometimes I wonder whether it matters if the fatigue is caused by my RA, Sjogren's or Fibromyalgia. This morning my eyes felt like they were sticking to my eyelids. Eye drops help but not enough."

Julie says "I know the first thing on my list is stretching/exercising my feet (so I don't get that awful plantar fasciitis) and trying to stand up, move and get my house coat on.

Then, I get in my Chair/stair lift that takes me downstairs.  I could go on from there and maybe I will do that.  I also use a knife to open up those "easy-open" tabs on milk cartons, etc." 

Lily says "I have a pill bottle opener that looks like this one.

My friend Ali bought it for me years ago and I use it every day."

I have asked my pharmacy to make sure that they put my medication into containers that are easy to open.  If it's child-proof, that's the same as RD proof for some of us.

Patti talked about bottles of all kinds "Some bottles I have found incredibly hard to squeeze, so I avoid buying them; some plastics are just too hard to squeeze. Like honey,mayonnaise,mustard, shampoo. I would also wish for RA to be more widely known about and understood, rather than people thinking you just have the odd achy joint."

She also mentions the problem of being stranded in snow and unable to shovel your way to your mailbox, another expense you don't need on a limited income.  She had to have a special car ignition key turner made because she could no longer use the regular key after her fingers got bad. She carries a rubber pad in her purse in case she needs to turn a doorknob.

I think Patti's rubber pad is a rubber circle like this to help with grip. (Canadian version)

The new cars with push button ignitions are much easier to start. It's so simple to get in the car and drive.

Also on the plus side Lily really enjoys being able to take as long as she needs to get ready in the morning. "One thing RA/RD has given me is the gift of time." (at a cost of course)

I'd agree that RA has given me a lot too. My life is not what I expected it to be; that's so common with or without chronic disease. 

After I retired I wanted to be able to volunteer in health care especially connected to RD. My wish came true in spades and even though I miss my clients and staff members, I have found my virtual life very exciting. It's quite possible to make your virtual life and your real meet up.

Still I do agree with what @angryblacklady tweeted one day. "Twitter is for introverts" And It was interesting watching the #MedX hangout a few weeks ago. Most the panelists said they were not outgoing so here's hoping when I'm at MedX this year I'll fit in. Though  fitting in at MedX is different from fitting in at most conferences.

Sjogren's Syndrome Lectures

Sjogren's Syndrome is an intrusive illness to deal with and it takes a lot of searching to find answers. While looking for links to post I came across these lectures by Dr Arthur Bookman. He's the Director of the specialized Sjogren's Syndrome Multidisciplinary Clinic at Toronto Western Hospital.

The first lecture is called What Our Patients Have Taught Us and has data about the survey study done among patients. It's a large file with pictures of the Schirmer's test and more.

It's continued in the second file and is on a very professional level since  it is a teaching lecture.

You may find in reading this that you have to look for some definitions. That's an effective way to learn correct medical terminology. This helps your ability to discuss Sjogren's Syndrome with your doctor.

Virtual both for Sjogren's from WAAD. Booth and lecture are virtual

Health literacy is strongly connected to good outcomes in illness, so the more you learn the healthier you are likely to be.

If you like to read scientific studies and lectures you could follow @sjogrensca on Twitter. Sjogren's Canada tries to post a new link to a study or useful fact every day. I still find that www.dry.org is a good source of useful tips. Dr Robert Fox, a Sjogren's expert put that site together.

Part 6. Immune System Gone Wild. Dr Miriam Grushka and Dr Lisa Prokopich

Dr Miriam Grushka, who is an Oral Medicine and Orofacial pain specialist, has been a long time supporter of the Sjogren's Society of Canada. Her topic was Taste and Smell In Sjogren's Syndrome.

I learned that the loss of taste that some experience with Sjogren's affects your retronasal sense of smell also. There is not much research in this area.  Yeast infections cause changes to the tongue as well as the mouth. When this infection is treated successfully, even if your tastebuds are gone they are likely to return.

Dr Grushka is also the go-to expert for burning mouth syndrome which sometimes occurs in Sjogren's.


Dr Lisa Prokopich,OD, M.Sc. spoke about "Artificial Tear Products – How To Choose?" She is Head of the Ocular Health Clinic at the University of Waterloo.

Dry eye can be episodic or chronic, and the tear supplement composition makes a difference in effectiveness. It is not really accurate to call them tears; they are really lubricants. They can help to heal the ocular surface. All are approved as over the counter (OTC) products. This is not based on clinical efficacy.

If you use artificial tears more the four times a day preservatives can be a problem. The most common one is BAK (benzalkinium chloride) and sensitivities to it are common. Some newer preservatives are less toxic.

I learned a  lot about tears, but am still not positive which is the best for me. I hear it's best not to mix brands. Here are some other comments that may be helpful.

Cellulose polymers as in Refresh and Theratears are beneficial.
Systane Ultra does help to heal your cornea. 
Systane Balance is good for meibomian gland dysfunction.

                                                                  Barbie's eye
Ointment gives more comfort than it does healing. The brands available contain mineral oil and petrolatum and are helpful to use at night.

Tears are hypertonic, a hypotonic tear is preferred. Hypotonic solutions have low osmolarity -Theratears is lowest, Hyptears, Refresh Optiva and Optive Advanced are also low. Hypertonic solutions are not for dry eyes, they can make it worse. With dry eyes we are better off with a hypotonic solution like Theratears.

She also gave us some web resources to use.

Sjogren's Society

The Ocular Surface (now owned by Elsevier- only abstracts  free)

Eye Tube OD

Dry Eye Zone  Interesting site

Links to past Sjogren’s posts:

Part 6. Immune System Gone Wild. Dr MiriamGrushka and Dr Lisa Prokopich

Part 5 Immune System Gone Wild Dr Susan Abbey 

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay 

Part 3 Immune System Gone Wild: SjogrensNational Conference 2013 Dr Bruce Jackson 

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

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

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

Clinical Studies

Anxiety was the main reason that I started reading medical journal articles.  It's almost like an amusement park - you're up, then you're down.  There are so many complications I have read about that I don't have.  As a patient usually watchful waiting is the best idea for me.  So goodbye to cachexia and amyloidosis for now, not to mention interstitial lung disease.

The last study I read appears here http://www.ncbi.nlm.nih.gov/pubmed/22709490

A study of the prevalence of sicca symptoms and secondary Sjögren's syndrome in patients with rheumatoid arthritis, and its association to disease activity and treatment profile. 

CONCLUSION: Among the 307 RA patients, 28% had at least one sicca symptom. The estimated minimum of prevalence of sSS in 307 RA patients was 3.6%. Secondary Sjögren's syndrome was not found in RA patients treated with biologics such as TNF blockers.

Well I wish that conclusion about not seeing Secondary Sjogren's in patients treated with TNF blockers were accurate in people outside the sample that was used.  Really, I want it to be prophetic.  But it's just another dip in the RA roller coaster.

Could they be implying that it prevents the onset of Sjogren's Syndrome in Rheumatoid Disease? That would be a good reason to tip the balance in favour of biologics for RA treatment if you ask me for my opinion.

Sjogren's is unpleasant to deal with, treating the symptoms is costly and it also adds limitations to one's life.