A newly-diagnosed Sjogren's Syndrome patient has to deal with an overwhelming amount of information. What actually is SjS? Does it get worse? Will I ever feel better? How is my life going to change?
Even though the doctor may have spent considerable time explaining autoimmune disease, if the patient is anything like me, she/he leaves the rheumatologist's office with a zillion unanswered questions swirling around in her head and clutching a few prescriptions (Along with insurance forms, return appointment reminders, and who-knows-what-else that was handed to her as she left).
Once at home, she may look at those prescriptions and think, "What the heck IS this stuff, anyway?"
So what the heck ARE the medications used most commonly in Sjogren's Syndrome?
Any discussion about medications and Sjogren's Syndrome must begin with the following facts:
- Sjogren's Syndrome cannot be cured. (Which is why more research is needed!)
- Sjogren's Syndrome can affect multiple systems in the body, so symptoms can vary greatly between patients.
- Sjogren's Syndrome is an autoimmune disease, and is treated with many of the same medications used in other autoimmune diseases such as rheumatoid arthritis and lupus.
Your doctor may choose to prescribe from a wide variety of medications used in Sjogren's Syndrome depending on your particular symptoms. These meds can be broadly categorized based on their specific actions in the body.
Frequently, the first prescription handed to a new Sjogren's patient is one from the category DMARDs, or Disease Modifying Anti-Rheumatic Drugs. The purpose of these drugs is to change the progression of the disease by reducing the efficiency of the underlying cause. DMARDs can be life-saving and very effective drugs. As with all medications, however, they all may have significant side effects and may have more benefit for some than others. Your physician can help you understand the balance between benefit and risks in using these meds. A few examples of these medications include:
- Plaquenil (hydrochloroquine) Plaquenil is the most commonly used DMARD in the early treatment of SjS. It is in the anti-malarial class of drugs. It is prescribed to reduce body-wide inflammation and pain and to slow progression of SjS. When used in higher doses, it may cause side effects in the eye, and while this is rare, eye exams should be conducted every 6- 12 months. More common problems encountered with Plaquenil include upset to the GI tract.
- Other drugs, such as Methotrexate, and Imuran reduce the general activity of the immune system. These types of drugs may also be used in organ transplant recipients in preventing the immune system to reject the new organ.
- Enbrel and Remicade belong to a group called biologic response modifiers. They block tumor necrosis factor, (TNF) a specific protein that is part of the immune inflammatory response.
A second category of drugs, the anti inflammatory medications, can be divided into two groups, steroids, and non-steroidals. These drugs do not change the mechanism of the disease itself, but attempt to decrease the inflammation that results from the disease.
- Corticosteroids including prednisone, cortisone, and dexamethasone, are powerful drugs that mimic the action of hormones released from the body's adrenal gland. While very effective, they also have significant side effects especially in long term use.
- NSAIDs, or non-steroidal anti inflammatory drugs, may be familiar to us as over the counter medications. They include aspirin, ibuprofen, and naproxen, and are used to ease general discomfort and are intended for occasional use. While OTC medications are easily obtained, they are not without side effects and unwanted drug interactions, so use these as all medications, with caution. Tylenol, or acetaminophen, is an OTC pain reliever, but does not have anti inflammatory properties.
- Another category of NSAIDs are available by prescription only and reduce pain by reducing inflammation. They may include Diclofinac, Indocin, and Sulindac. You can read more about these medications here.
A third category of drugs commonly used in Sjogren's Syndrome are those that stimulate the production of saliva. They include Salagen or pilocarpine, and Evoxac, or cevimeline HCL. They are cholinergic agonists which means they stimulate the nerves that control salivation. And, yes, they too have a long list of side effects, the most common being sweating.
Your doctor may suggest the use of eye drops. Restasis prescription eye drops contain the immunosuppressive drug, cyclosporine. You can find an abundance of brands of OTC drops and will have to experiment to see which particular drop best meets your needs. For especially irritated eyes, some sources suggest choosing eye drops packaged without preservatives in single-dose vials.
It's important to remember that each patient has their own unique experience with Sjogren's Syndrome. Some lucky patients find that they do not need to take prescription medications. Others, such as myself, do. And are thankful that these drugs are available to improve their quality of life with autoimmune disease.
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5 comments:
Thank you, Julia!
I am new to your blog having only recently been diagnosed with SJS. Still undergoing many tests. Your post on drugs and what they do is very helpful. So far I have Diclofenac but could not take Nuvigil, which I think is a version or update of Provigil? I had a significant allergic reaction to it. My fatigue is unbelievable and very debilitating. I am a very active person and am finding this a most difficult challenge.
Thank you for this information. I'm sure I'll be visiting again!
Sojogener - I'm glad that you found this info useful. Yes, Nuvigil and Provigil are very similar drugs.
Hang in there. For most of us, this is the most difficult time in accepting the enormous changes that come with autoimmune disease.
I enjoyed reading your blog!
http://sojournerrides.blogspot.com/
Ahhh. Reminds me of my youth and ripping around our farm on a little Yamaha Enduro.
So how fortunate is this? I am now taking Salagen...and I live in Alabama--where we have 100% humidity in the Summer! So I have more sweating ahead of me now??
I 'm very fortunate I am able to get Nuvigil safely, easily and cheaply. I recommend it if you can get it.
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