Thursday, September 23, 2010

Sjogren's patients - do you know what's in your Restasis?

Sjogren's syndrome is an autoimmune disease in which the body's antibodies mistakenly attack healthy cells instead of invaders like bacteria or viruses. In the case of Sjogren's, the areas that are under siege typically include exocrine glands - the glands that produce substances that go to the outside of the body. Examples of things exocrine glands produce are:

Stomach acid
Protective oils in the skin

One of the worst parts of Sjogren's is dry eye. In Sjogren's, the dry eye can become so severe that damage occurs to the eyeball.

Typically, Sjogren's patients are first advised to use artificial tears products when their eyes begin to feel gritty or dry, as well as taking environmental precautions to reduce their symptoms, including eliminating medications like anti-cholinergics that may further dry the eye. Eventually this is often not enough. The next step for many patients is the addition of a product like Restasis.

Although I always encourage patients to be sure and read all the information they can about a drug, often times it's difficult to find the really important good stuff hidden within all the jargon. That's what this post is designed to help you with. I'm going to assume that, if you're reading this and using Restasis, you already know the basics of how to use it and its contraindications etc.

Restasis is essentially Cyclosporin in a special carrier - Castor Oil.


Cyclosporin is a drug designed to suppress the action of the immune system. It's first use was as an anti-rejection drug for transplant patients. When put into the eyes, it's thought to suppress the action of the antibodies in the conjunctiva and goblet cells which lowers inflammation in the tissues there. The drug is powerful and can cause some fairly serious side effects when taken internally. Just because you're putting it in your eye is not a reason to dismiss those potential effects. it may take from weeks to months to see maximum benefit from the drug, so have patience. Unfortunately, research showed that only 15% of patients taking Restasis showed improvement, and 5% of those taking the drops without the cyclosporin added to them also received relief. More about that later. That being said, the company states that there is a high level of satisfaction among patients taking Restasis.

There are medications that should not be taken while using cyclosporin, and some of those are widely used in the treatment of autoimmunity. One glaring example is anti-inflammatories. Check your packaging instructions and be sure your doctor double checks your other medications. Additionally, use of grapefruit or grapefruit juices can be harmful and is definitely contraindicated. Grapefruit juice does something to the body that causes certain medications to build up, and this could be a serious issue with this medication.

Although you may not be taking cyclosporin internally, it is probably wise for Sjogren's patients to also have their dental visits at least every six months. Cyclosporin can cause dental problems as does the symptoms of Sjogren's itself.

Castor Oil

Castor oil makes up the bulk of the carrier used in Restasis. This means that the cyclosporin chemical was added to the castor oil so it can be put into your eye. The makers of Restasis were thoughtful, because they could have chosen any carrier, but they didn't. They chose castor oil which was shown in a 2002 study published in the journal Ophthalmology to reduce the symptoms of dry eye all by itself.

The negative of castor oil, is that it is not uncommon for patients to have an allergic reaction to it. This can include dermatitis, several forms of allergic conjunctivitis and even asthma. It has been shown in a study to actually cause cytotoxic effects in the conjunctiva. Castor oil is also used as a vehicle to deliver some chemotherapy drugs, but because of the increased risk for allergy, researchers are looking for a better way to carry the potent drugs needed for chemo. With this in mind, it's too bad that Restasis isn't offered with a myriad of different vehicles, giving the patient a choice which works best for him or her.

Alternatives to Restasis

I'm told that the company who makes Restasis accidentally found that the carrier itself worked well enough that they began to market it as Refresh Endura. Patients on this site suggest that, because of the problems so often found with Restasis, it should probably be used as a last resort medication only after trying everything else first. Additionally, if patients using Restasis suspect that it may be the cyclosporin causing their problems, a trial of Refresh Endura might be in order so that you don't have to completely stop treating the symptoms by stopping medication altogether. Another community member added his two cents, stating that he tried a product FreshKote that he felt was far superior to either Restasis or Refresh Endura

Interested in reading more about Sjogren's Syndrome? Try these interesting links:

Neonatal Lupus - babies born with SSA and SSB antibodies
Re-evaluating your mysterious symptoms after Sjogren's diagnosis
Dry Eye Solutions
Salvation in salivation
Do you and your rheumatologist disagree on the severity of your dis...

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Sources: American Osteopathic College of Dermatology , Dry Eye Talk ,
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