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?

Patient Stories About Generic Drugs

Like almost everyone else who uses medicines to improve or maintain their health, I take a large percentage of  generic drugs. Up until the last few weeks I have not noticed any difference in the effects of brand name vs generics.

                                           Generic drugs 

Unfortunately that is not the same for everyone, and now I am joining their ranks. One of the drugs I take recently just became a generic and I noticed a real difference quite quickly.

With most medication you judge the efficacy by a gradual change in the way you feel or by lab tests that indicate how well they are working in your body.  So many drugs that we take are preventive or work slowly on changing your system. With those you are unlikely to notice a difference. This new generic (Pilocarpine, brand name Salagen) is the only one I take that takes effect quickly and has a noticeable physical effect.

                                   Non-generic - see markings
My doctor wrote me a note and a new prescription that says "no substitutions". The insurance company says fine, if the doctor says I need the brand name they'll pay (and so will I of course) so that is lucky for me.

Neither the doctor nor the pharmacy mentioned reporting an adverse effect for this new generic. I was able to access the 32 page monograph that the new manufacturer supplied to Health Canada. They listed every paper about the drug from the past and talked about how the drug worked in trials compared to the brand name drug. They only tested the effects on 5 women. I guess I'm not like them.

Patty's Story:

"I am taking the generic Prevacid and I don't like the effects.  It upsets my stomach.  I stopped taking it.  I don't know which one would be easier on my digestion.  I don't think I ever got the brand name Prevacid though I do hear the acid reducers are hard of the gastro tract. 

I haven't been able to get Prevacid..still jumping thru hoops for that.  I'm not taking anything....just sort of po'd.  And not doing a thing about it.  I'm trying out the 2nd manufacturer but really not.   The pharmacist says if the Dr pre authorizes it, I can get it but he already did pre authorize it and I still was denied.  I am still waiting for approval on the Reclast....  I think they hope I break my hip or leg first. Then they'll approve it. 

                                                 Patty is angry in a non-threatening way

I'm just so mad....I don't know when the patient had to be their own doctor, secretary and insurance company to make sure you get the things you need."    

Julie's Story

"I am going to add my experience with the generic of Prevacid to Patty's reply.

I have Barrett's esophagus - thanks to use of NSAID's.  This is a pre-cancerous condition.  The doctor put me on Prevacid and it really helped.  At a follow-up endoscopy, he could barely see anything in my esophagus.

Well, my insurance company switched me to the generic of Prevacid - Lansoprazole.  I tried that for about a month and started having GERD symptoms.  After much confusion and doctor's visits, my insurance company agreed to pay for the Prevacid.  I started back on the Prevacid and things returned back to normal.  So no one can tell me that the generic works like the Brand name drug.  I had to get special permission from the Insurance Company to get them to pay for the Prevacid.  I told them that if they would rather pay for treatments for esophageal cancer instead of the correct medication, then that was their choice.  I have to get approved every year.

                                   Please approve my brand name drug

The Prevacid is EXPENSIVE!.  I don't quite understand why.  Another thing is that Prevacid is sold OTC - but the strength is 1/2 of that of the prescription medication.  I take 30 mg and the OTC is 15 mg.

Insurance companies are really getting screwy with what they will allow their patients to have."

Julie

Patty continued...
My Caresource insurance lady was telling me about Exact Care where you get your meds in an easy tear off pouch all tightly wrapped and inside a little cardboard box.  All your meds for the month are there...just tear them off as the day goes along...am pills, lunchtime,  afternoon, PM and evening, bedtime.  She asked would you be interested in that? Its so convenient.  I said no way....they're already substituting my meds when I pick them up at the pharmacy. Or switching manufacturers on me.  I want to see what I'm getting and I don't want a month of a med or two that they've subbed that may make me sick or is totally different than what I am used to.   

Ronny's Story:

"I guess you are proving my point.  The move is towards saving money first and finding healthy resolutions second. 

Many years ago it was predicted that this time would come.  Health would be the big commodity and everyone began positioning themselves to make out like bandits.  The health center I worked for had big meetings to discuss how they could position themselves to take advantage of the health boom and also baby boomer aging.  They got in early.

Now we have to fight to keep what little Social Security we have.  I was hoping I could afford more fruits and vegetables.  Guess that's not happening!"

                       AmusingPlanet.com Harrowgate Flower Show. Fruit&veg for Ronny

Here's another story about generics from CNNMoney - Are Generic Drugs Really The Same as Branded Drugs? . This story points out that although generics compared to the brand name they are not compared to one another so the relative usefulness is unknown.

This is the link to the original post called Generics: Not Just an Image Problem

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.

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.