Going Fast, From a Store Near You

As you go through your life with a chronic disease you find that there are many ways to treat your symptoms. It takes time to work your way through them by trial and error and find out what has the best effects for you.

Once you have a routine and favoured products it is very difficult to find replacements for your tried and true over the counter or  therapeutic health and beauty products. You really depend on them, more than if it were just shampoo or soap.

Behind the 8 Ball for product availability

Oilatum was a good bath oil but it is no longer manufactured. The pharmacist I asked advised the use of Baby Oil but it just sits on top of the water and coats the bathtub, not me.

I use Oral Balance Mouth Gel everyday and also Biotene tooth paste. I've gone to stores hoping to find old stock with no success. You can read about recent changes to these products on Julia's Reasonably Well blog. In my opinion the enzymes were the active part of the mouth gel and taking xylitol out of the toothpaste and adding saccharine85 sounds like folly. At Sjogren's conferences in the past leading specialists in Sjogren's and dry mouth talk about the benefits of xylitol.

Biotene tooth paste

Even my eye drops, Bion Tears seem to have disappeared. (update: I found a box and have reports of more so there's hope for this one)

Those are all things I use for Sjogren's Syndrome. It's tough enough to have health problems without losing your products. Also the new generic for the prescribed medication I take (Salagen) is terrible. The delivery mechanism is not at all like the original brand name product. The required approval process must not have tested it on users, just naive members of the general public. That's the only way I can imagine that it passed the tests as having the same bioavailability.

Salagen

Even my Rx face cream is impossible to get. Retin A is almost generic. How can it be that no one makes it anymore? The pharmacist said Retin A was on back order and they couldn't get it.  If it's gone forever I'll be like Dorian Grey becoming his picture - probably will age 10 years overnight. 

My friend says "What's up? I am having trouble finding injectable B12, injectable iron, and now, K-lyte potassium tablets (fizzy orange tabs for water) are on back order".

Maybe some of this occurs because so many small companies are being bought up to lessen the competition, then the buyers dump the less profitable brands.  So while stock in companies like Valeant goes up like a balloon, we are probably losing a lot of specialized products.

I'm getting steamed up about all these things disappearing. No more Pears soap to be found anymore. I'm starting to worry about my Neutrogena soap. It's always practically hidden at the pharmacy in the bottom corner of the shelf behind a dump bin display.

This post does not even mention the drugs that we can no longer find readily. The FDA and HealthCanada post these shortages but do nothing to ensure supplies of these drugs which require high manufacturing standards or have become cheap generics.

It's all about the money. Has more and more specialized and pin-point marketing replaced product availability?

Sjogren's Helpers

Every chronic disease comes with its own shelf of products to make your life 'easier'.  With Sjogren's Syndrome you have many parts of the body with symptoms that you have to deal with.

                                     cgphoto.photoshelter.com

There are many strategies that you hear of to help your symptoms in one way of another, very little that helps overall.  I looked around my house and found many standbyes and possibilities.

Salagen (pilocarpine) would be the winner if there was one prescription drug I would not give up. When I don't take it my mouth and throat get unbearably dry and I cough and choke when I swallow. My voice even becomes faint.

You can have a mouthwash made with the active ingredient (pilocarpine) I found it very bitter.

There are also many artificial saliva products available like MoiStir for one. Biotene makes a special dry mouth tooth paste and mouth wash, as well as my stand-by product Oral Balance.

The dental hygienist I see suggested a little olive oil for mouth dryness and a support group member suggested oregano oil. The benefits of using MI Paste and a night guard can be found here.  As you can see Oral Balance and MI Paste get a lot of use in my house. 

I keep the tubes sitting around for a while in case I run out and need to try to get one last bit out of them. Oral Balance is a product I use every night before I go to bed. I hate to wake up and have a dry mouth. It's a gel you put between your teeth and gums before bed.

And this is a product used by singers, one of those tried and true ideas based on a natural product.

In the category of dry eyes some use a personal humidifier at their bedside.  I bought a pair of these goggles called Tranquil Eyes through the Sjogren's Society of Canada and so far used them only on a plane.

I hear that they are also great for sleeping. The spongy part that touches your eyelid can be moistened for extra sleeping comfort. 

Blepharitis is often part of the dry eye equation. I have tried these items to help.  The Blephagel was suggested by my opthalmologist.

And don't forget the nose. I have found the saline spray the most helpful item so far.  I have not wanted to use a neti pot or a nasal rinse but I would if things got worse.

When my nose gets so dry I can feel it in the sinuses and that's when I use saline spray. I find the NeilMed easiest to handle.  It probably works best if you use it every day but it's easy to get tired of working so hard to stay in the same place.  That's what happens when you treat the symptoms and not the underlying causes. A lot of work and no apparent progress, though not getting worse is what we all hope for.

This is far from a complete listing of products and is not meant to be a commercial for items. They were all here in my house even though I use some very infrequently.

For additional information there are tips at Sjogren's Society of Canada, and also at Dr Robert Fox's helpful and comprehensive site called dry .org. That was one of the first resources I used.

It's also a great benefit to attend the Annual Conference of the Sjogren's Society of Canada. The speakers are all at the top in their fields, and there is an hour set aside to give patients in the audience a chance to ask speakers and other volunteer health professionals questions of their own.