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

Sjogren's Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

                                                                           

Dryness is a problem

The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a "foreign body" in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like MI Paste on your teeth under the nightguard to strengthen your teeth.  This. picture shows a whitening tray but it looks like my nightguard

Night Guard for teeth

You can also massage your salivary glands to help stimulate saliva flow. It works best on the large glands near the temporomandibular joint located in front of your ears.

At the last Sjogren's Canada Patient Conference I asked Dr. Yepes if Salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some salivary glands spared. Up to 50% of your glands can be functional and yet you still feel very dry.

I added this picture because in the past my eyes were so dry that I would look at my computer screen with my eyes half closed because they were so dry and painful.  The dryness also made me go to bed early sometimes because dryness can makes your eyes feel so sore you just can't keep them open comfortably.  I tried punctal plugs (a doctor can plug your tear ducts so the tears stay on the eye) and they helped somewhat. In fact I have had them in my lower tear ducts for the past six years. Then since I was still dry I was able to try Restasis prescription eye drops and they worked for me. That was a break since they don't work for everyone. These drops contain cyclosporin and while they do sting a little, it's worth it for me. I get best results by putting them in my eyes  and then shutting my eyes for a few minutes.

Restasis

I use hormones too.  Dr Ann Parke has spoken at most of the annual conferences of the Sjogren's Society of Canada and is a leading expert on the subject.  She touched on this subject favourably so I am more reassured about the effects of hormones than I would be otherwise. Hormones help with the vaginal dryness and the frequent UTIs.

Sjogren's is different for everyone, but I find it almost a part time job just to care for Sjogren's Syndrome alone.
 
I just read today about acupuncture and Sjogren's in Julia's Reasonably Well blog about Living Well With Sjogrens    She has a great picture of acupuncture points and some useful advice too.

Also, I have found www.dry.org to be a good source of practical info from Dr Robert Fox, who is a leader in the field of Sjogren's Syndrome. If you look for research on PubMed you will find many papers credited to him.