Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Managing Sjögren’s Vasculitis

Posted on Sun, Oct 30, 2016

Ask the Expert:
“How can I manage my vasculitis so that it doesn’t become too severe?”

Vasculitis usually manifests with purplish skin lesions on the legs and sometimes the trunk. It is usually associated with high levels of gammaglobulin in the serum. The skin may become easily irritated and even break down in areas where numerous lesions develop. The skin around the ankles is most susceptible. Skin break-down and ulcerations may form.

Although severe vasculitis from Sjögren’s may require hydroxychloroquine (Plaquenil), oral corticosteroids and immunosuppressive medications, milder forms can be managed with simple conservative measures.

TMS October 2016.pngSkin breakdown occurs with greater frequency when there is fluid accumulation around the ankles so measures that minimize edema (excess fluid accumulation) in the legs can be helpful. Such measures include elevation of the legs and the use of support hose. When sitting, your legs should be propped up on a chair and not left dangling for too long. Support hose to control edema should be of the above-knee variety. Hose that bunch up below the knee may actually act like a tourniquet and impede blood flow in the legs making edema worse.

Mild trauma to the skin of the legs can also favor skin ulceration so wearing pants may provide an extra layer of protection. Edema can also be controlled with diuretics. Some patients with vasculitis may benefit from low dose aspirin to keep the blood vessels open.

Of course these conservative measures should also be applied in instances when immunosuppressive therapy is needed. Consult with your doctor if diuretic therapy or low dose aspirin is right for you.

by Herbert S. B. Baraf, MD, FACP, MACR

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Plaquenil, Sjogren's, Treatment, Dry Skin, Immunosuppressant, Ask the Expert, Hydroxychloroquine, Vasculitis

Back to School, Back to Sjögren’s Basics

Posted on Mon, Sep 12, 2016

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This fall, as students around the country begin to head back to school and get ready for a new year, the Sjögren’s Syndrome Foundation (SSF) is using this time to write about “back to basics” in terms of managing your Sjögren’s health. In this blog post, we have focused on the fundamentals that can often be forgotten in the busy day-to-day life.

Your medical team:

As most of you know, rheumatologists have the primary responsibility for managing Sjögren’s and usually are the lead of your “medical team.” That is why, when seeing a new physician or any of your many specialists, it is important to establish clear guidelines regarding your medical management, which means clarifying what things that doctor will be managing versus what your rheumatologists and/or primary care physician will oversee. All of these healthcare providers make up your “medical team.” However, it is crucial that your lead physician has all of the information regarding your diagnoses, treatment plans and prescriptions that your entire medical team is providing. This will help the lead physician better manage your case.

It is important to find a doctor who is both a good partner in treating your disease, as well as a good listener. While we know this can be very difficult, it is needed to make sure you are getting the attention your disease requires.

What medications to ask your doctor about:

A Sjögren’s patient’s treatment path should be decided on a case-by-case basis after the potential benefits and side-effects are weighed by patients and their healthcare providers. Currently, a number of different medications are available that might be used to manage symptoms. However, at the present time there is no single medication that has been conclusively proven to slow the progression of Sjögren’s or cure the disease.

Success in using disease-modifying agents to treat closely related disorders like systemic lupus and/or rheumatoid arthritis has led physicians to utilize some of these treatments in Sjögren’s as well. The two most popular choices at present include Plaquenil® (hydroxychloroquine)® (hydroxychloroquine) and intravenous rituximab. The decision to prescribe these specific medications is made on a case-by-case basis after careful consideration of potential risks and benefits.

In addition, many patients also are prescribed corticosteroids as well as prescription products to treat their various symptoms including but not limited to dry eyes, dry mouth, gastrointestinal and joint pain symptoms. As the SSF continues to release Sjögren’s Clinical Practice Guidline Sheets, be sure to ask you physician about the recommend treatment options listed. 

The SSF is dedicated to research into studies that help us better understand the full benefit of these treatments as well as working with companies to help develop new therapeutics that can treat the disease as a whole. The SSF is excited about the current pipeline for treatments that are being investigated by companies, and we continue to be at the forefront at working with and encouraging these companies to move forward.

What to take to a doctor’s appointment:

You should be prepared for a new doctor’s appointment and know your specific objectives for that visit. If this is your first visit to a doctor, it is essential to give them a copy of all your medical records. They will not have time to read it over there during your appointment, but they can keep it on file to review after your first visit.

It is also key to show your physician that you want to be an active participant in your care. Make sure to tell them about all of your daily care. Bringing with you a typed list of medications with dosage (including over-the-counter products and supplements) can be helpful.

In addition, keeping a symptoms journal or diet journal can be beneficial to recognize new or worsening symptoms along with foods that can trigger a are. Click here for the “Tracking Your Sjögren’s Symptoms” worksheet.

And finally, if you have questions for that healthcare provider, bring a list and hand it to them to review. This will help expedite their answers and make sure you get as many answers as possible in one appointment. The healthcare provider can sometimes quickly review a list of questions and tell you which ones are most important to be concerned about and which questions he/she can address at another appointment. Not only will you leave with more answers but your healthcare provider will appreciate your organization.

Find support:

As a Sjögren’s patient, you face the challenge every day of coping with this debilitating disease. Though there are an estimated four million Americans living with Sjögren’s, being diagnosed with an invisible illness can be isolating, which is why it is important to find support and credible information.

Signing up to receive The Moisture Seekers newsletter by becoming a member of the Foundation is your first step! Please share the articles in the newsletter that you find helpful with not only your physician, but family and friends to start a dialog about what you are going through.

Secondly, think about what works best for you in regards to how you can learn and gather information. Patients find different ways to learn how to live with Sjögren’s and here is a listing of just a few:

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Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Immunosuppressant, Rituxan

Ask the Expert: Plaquenil and Sjögren’s

Posted on Mon, May 23, 2016

Question_and_Answer-1.jpgWhat is Plaquenil and what are its benefits for Sjögren’s patients?

Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren’s. While there is good clinical evidence demonstrating the drug’s efficacy in rheumatoid arthritis and lupus, there are very few studies looking at hydroxychloroquine as a treatment for Sjögren’s. The studies that do exist show mixed results (some show benefit and some show no benefit) in whether or not the drug is effective in helping with pain, fatigue, dry eyes or dry mouth.

Nonetheless, despite the lack of clinical studies, rheumatologists feel that hydroxychloroquine may have a potential beneficial effect in helping patients with symptoms of fatigue and achiness, which are common complaints in patients with Sjögren’s.

TMS.pngHow the drug works is unclear, but recent research has pointed to an inhibitory effect on toll-like receptors that are proteins involved with inflammation. The good news is that hydroxychloroquine targets the immune system without causing an increase in the risk of infection or cancer that can be seen with other immunosuppressant medications. The typical dose for hydroxychloroquine is 200-400mg per day and is based on a person’s body weight (or if you are overweight, your ideal body weight). While hydroxychloroquine is considered a relatively safe medication, like all medications there are potential risks. These include body rashes that often will itch. The rash typically occurs in the first 6 weeks and is usually mild. In general, the rash will resolve within 2 weeks after stopping the drug. A more severe rash affecting larger areas of the body may occur but is not common. If this type of rash occurs, other medications such as anti-histamines and steroids may be required to help with symptoms.

Over time, hydroxychloroquine may uncommonly have an adverse effect on the retina that can lead to permanent visual damage if not picked up early. In order to protect the eyes, a baseline exam is recommended be- fore starting the drug if you are color blind, have prior retinal problems or have never had a dilated exam (checking color vision is one way the doctor monitors for early damage) or within the first 6-12 months if you have a history of healthy eyes and a recent retinal examination. After the baseline exam, it is recommended that patients get a dilated exam at the minimum of once per year. Retinal problems are more likely to occur after 5 years of use. Newer technologies are available (OCT-optical coherence tomography) that can pick up early changes. If early changes are found on exam, it would be uncommon to have progression of eye toxicity or visual changes.

Other potential side effects include but are not limited to nausea, changes in mood, muscle weakness, skin pigmentation and anemia. While the drug may be used during pregnancy, the potential benefits and risks should be discussed with your doctor.

In summary, if you have Sjögren’s, hydroxychloroquine may be an option to help your symptoms. Because there are other more effective therapies available to treat dry eyes and dry mouth, it is typically prescribed to help musculoskeletal pain and fatigue. Be patient, as the drug may take up to 6 months to see a beneficial effect.

by Scott Zashin, MD Internist & Rheumatologist in Dallas, TX

This information was first printed in The Moisture Seeker, SSF's patient 
newsletter for members.

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Topics: Plaquenil, Dry Eyes, Sjogren's, Fatigue, Treatment, coping with sjogren's, Immunosuppressant, Ask the Expert

Ask the Doctor: What's an Immunosuppressant?

Posted on Sat, May 30, 2015

Q. I keep reading about immunosuppressants as a therapy for Sjögren’s. What is an immunosuppressant?

A. There isn’t a universally accepted definition of an immunosuppressant medication. In general, I think most providers would agree that a medication that has been shown to potentially increase the risk for infections in long- term studies would be considered an immunosuppressant. It is important to note that many, if not most, patients with Sjögren’s do not need or benefit from immunosuppression.

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For certain patients, however, they can be very helpful. The most common immunosuppressant medications used for Sjögren’s include methotrexate, azathioprine (Imuran), mycophenolate (Cellcept), cyclophosphomide (Cytoxan), and biologic agents, such as rituximab (Rituxan). These are also used for many other related autoimmune diseases, and the effect of each medication on the immune system varies from blocking inflammation pathways to directly affecting white blood cells.

There is a common goal for all immunosuppressants: to put the disease into remission, or at the very least reduce the severity or frequency of symptoms and allow patients to avoid steroids. As with all medical treatments, the hope is that the benefits outweigh the risks. If not, then the dose is typically decreased or the medication is stopped completely. With the exception of certain cases, immunosuppressives are generally used to help provide symptomatic relief and not necessarily to prevent something bad from happening. So if an immunosuppressive is tried but doesn’t help after an adequate amount of time, it is usually stopped.

Hydroxychloroquine (Plaquenil®), a medication often taken by Sjögren’s patients, is not generally considered an “immunosuppressant.” While it does change or “modulate” the immune system in various ways, it does not lead to an increased risk of infections and does not require lab monitoring.

by Joseph Lutt, MD

This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.

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Topics: Plaquenil, Symptoms, Sjogren's, Treatment, Imuran, Immunosuppressant, Rituxan, Cytoxan, Cellcept

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