Professional Patient

New, Dedicated Sjogren's Syndrome Treatment Clinic at Johns Hopkins-Bayview

JHU has established a new Sjogren's center at their Bayview Hospital in East Baltimore, MD. It's a brand new clinic designed to provide one-stop care (dental, ENT, OB, ophthalmology, neurology, and rheumatology) in a single office. It has a primary research aim of better defining Sjogren's (I think with the goal of making it a disease rather than a "syndrome") and exploring issues like the weird neurological changes and pain issues that can happen in Sjogren's patients.

I visited yesterday and met with the neurologist on staff, Dr. Julius Birnbaum. He is excellent. He spoke recently at one of the recent Sjogren's Syndrome Foundation patient conferences - his talk covered neurological complications of Sjogren's. Among other things, his research team has identified some component in blood (a gene? a protein? an antibody? I'm not sure) that is high in Sjogren's patients with peripheral neuropathy.

I have also been treated by the director, Dr. Alan Baer, at other Hopkins facilities in the past. He is excellent also - he's the lead rheumatologist for the new clinic.

They are accepting new patients (local or out-of-town), although I expect them to get overloaded pretty quickly with people like us! If you are interested in making an appointment, full instructions are at this URL:

http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html

Fine Needle Aspiration, Take Two

My doctor unnecessarily scared me to death over my fine-needle aspiration (FNA) results. I fully expected to hear something like "it may be cancer," "it is cancer," "we need more tests because it seems to be cancer," etc. And instead? He says that they didn't get enough material during the previous FNA to run flow cytometry. So we need to do the test again.

So I was terrified over nothing! Nothing! And why the heck did I have to go in to see the doctor for something like that - couldn't he have called me instead? Growl.

My repeat FNA will not be at the doctor's office. Apparently the quick and easy route didn't work - they are sending me down the road to the big university hospital (Johns Hopkins) to have this one done. Moral of the story? Go to the big hospital the first time. Yes, it's inconvenient. Yes, it takes forever. But they should be able to do it right the first time.

 

Parotid Fine Needle Aspiration Results: Trouble Ahead?

I'm driving home from a two-week vacation today and get an interesting call from the ENT who performed the fine needle aspiration of my parotid lump a few weeks ago. The message was clear: The doctor needs to see me during his very next clinic day, which is next Tuesday. The import of the call was not - the test results are NOT totally normal (he would have called about the test results rather than dragging me in to the office if they were all perfectly OK). But how bad are they? Fine needle aspiration is often used to diagnose tumors, but it can also identify granulomatous diseases such as sarcoidosis.

So now I have to impatiently wait until Tuesday to find out what the heck is going on with my lump. Waiting is going to be difficult! I am at least confident that the doctor will have enough information to get us started down the right path (whatever it may be) during the appointment. He sent the samples collected during the aspiration to the lab for flow cytometry analysis. That should help us fill in a few of the blanks.

Fine Needle Aspiration of My Parotid Lump

I saw my head and neck cancer specialist for my parotid lump. He did in fact do a fine needle aspiration (i.e., needle in the face) to remove some cells so they could be checked out. They will probably all be normal, benign cells... but you never know.

The procedure was fairly quick and easy. My doc injected a numbing agent into the lump itself. This felt like getting a bee sting. And there was some discomfort as the numbing stuff worked its way in. The numbing agent worked very quickly, so less than a minute later, my doc inserted a needle in to my lump and withdrew some of the fluid and cells. He prepared them for processing (I think he dropped them into a small sterile jar of saline), then stuck the needle in again. And a third time. This was to try and collect cells from a variety of locations in the lump and to try and reduce the size of the lump by removing excess fluid. It didn't hurt, but I could feel some poking/pinching type sensations as he worked. There was no bleeding to speak of. 

Unfortunately, the lump didn't go down much at all. I still look like I have the mumps! And the lump still feels awkward and taut. Apparently, not every Sjogren's related lump is one giant water balloon that can be easily drained. Some are "multilocular," which means they have lots of small compartments. Without sticking the needle into each and every one, you can't drain all the fluid and thus can't get the lump down much at all. Rats. 

In less than five minutes, the procedure was over and I was on my way. A few hours later, I realized that it felt like someone had punched me on that side of the face - the lump and muscles along my jawline were tense and sore. It hurt to open my mouth to eat my lunch. Two Advils later, I felt fine again. No pain. A few more hours later, I looked in the mirror and noticed that there was a small amount of swelling where the needle had been inserted. It looked sort of like a bug bite. By the next morning, the swelling was gone and the pain was gone, too.     

Now I am just waiting for results, which should come in 1-2 weeks.                        

My Pesky Parotid Lump

Just an update: here's my pesky parotid lump. Right there just below my left earlobe along my jawline. I'm off to the head and neck surgeon tomorrow to have this sucker checked out. I hope it's just an over-full cyst, but you never know.

Understanding Sjogren's Syndrome Parotid Lumps

This week, we all learned that Beastie Boys member Adam Yauch has a tumor in his parotid gland.

Well, as a Sjogren’s Syndrome patient, I’m always worried about having a tumor in my parotid gland. MALT lymphoma is a special variety of cancer that can develop in the parotid glands of Sjogren’s patients. Yuck. Just thinking about it – yuck. 

So I was amazed to hear parotid tumors being discussed on national news. Most people have no idea what a parotid gland is, let alone what it does. Adam Yauch’s illness may change that, at least a little.

I’ve had Sjogren’s for 10 years, and in that time, my parotids have gotten progressively lumpier (for lack of a better word) as my immune system tears them up. Little water balloon-like lumps will spring up one day, stick around for weeks or months, then (sometimes, if I’m lucky) go away. Sometimes they hurt like crazy, other times they just feel kind of heavy and full. Every now and then, one will puff up so much that my husband will say “oooh, honey, that one looks bad.” It’s been going on for so long that I hardly notice when a new lump appears, or an existing lump changes size. It’s just par for the course. Every morning, as I get dressed, I find myself hoping that my pink blush and sparkling blue eyes distract anyone from noticing my mumps-like jawline.  This brave fellow on Wikimedia posted a photo of himself before mumps and with mumps. My jawline today looks an awful lot like his “with mumps” photo. It’s like having chipmunk cheeks that have somehow sagged down to your jaw.

Usually, these lumps are cysts, relatively harmless sacs filled with watery fluid and debris. But sometimes, they are cancer. The best way to determine whether your worrisome lump is cancer or a cyst is to see an ENT specializing in treatment of head and neck cancers. During your first visit, the doctor will feel your face, perhaps order an ultrasound, MRI, or CT to get a better look at your lumps, and let you know. If there’s anything suspicious about the exam or test results, the next step is to have the doctor stick a needle in your lump and sample the material that’s in there (so a pathologist can view the cells and determine whether they are cancerous).

But nobody wants to have a needle stuck in their face every time a new lump appears or changes (especially if you’re like me and have lumps that go up and down like the stock market). How can you assess these suckers at home? My head and neck doc gave me a few rules of thumb:

Cancer hurts. (often)

Cancer grows. (always—sometimes very rapidly)

Cancer is hard. (always).

Much to my dismay, I have a lump on the left side that is growing by the day and not retreating. It’s not rock hard, but it’s not reassuringly squishy, either. And it’s uncomfortable (but at least not painful). So I am going to have the old needle-in-the-face next Tuesday to make sure everything is all right. An added bonus of the needle in the face? If there is simply fluid in this lump, the doctor can extract some of it, which will help the lump shrink and should make me a little more comfortable. Let’s hope that’s the happy outcome of my appointment. 

Can Fish Oil Reduce Sjogren's Syndrome Activity and Symptoms?

Many doctors now agree that omega-3 fatty acids (typically found in fish oil or flaxseed oil) can help reduce eye dryness associated with Sjogren's Syndrome. But can they do more? Omega-3s are often referred to as having anti-inflammatory properties, which makes many people who have autoiummune conditions like Sjogren's Syndrome wonder if omega-3s can reduce the "inflammation" behind autoimmune diseases.

Research has been spotty at best (a literature review from the Agency for Healthcare Research and Quality done in 2004 showed mixed or no results for use of omega-3s to treat rheumatoid arthritis, systemic lupus erythematosus, and inflammatory bowel disease), although the medical field is finally catching up to this idea. For example, Dr. Michelle Petri, a lupus specialist at Johns Hopkins University, is about to begin a clinical trial asessing the efficacy of fish oil in lupus patients; and the National Center for Complementary and Alternative Medicine is currently running a study focusing on fish oil and borage oil in treatment of rheumatoid arthritis. However, I know many autoimmune patients who aren't waiting for research to confirm that omega-3s help reduce symptoms... they are on fish oil or flaxseed oil already.

I have considered fish oil or flaxseed oil for my eyes, and wondered about whether it would do anything for my Sjogren's. I tried fish oil pills briefly, but the nasty fish burps afterwards really turned me off. When my allergist recently told me there is anecdotal evidence that fish oil helps alleviate the symptoms of exercise-induced asthma, I decided it might be time to try it again.

I consulted with my rheumatologist about whether omega-3s might help my Sjogren's, and if so, what the proper dose would be. She referred me to a study in the Annals of the Rheumatic Diseases 2008;67:841–848 showing that low-dose omega-3s have beneficial effects on disease activity in patients with SLE and help protect them against the atherosclerosis typical in lupus patients. You can read a project abstract in PubMed, here: "A randomised interventional trial of omega-3- polyunsaturated fatty acids on endothelial function and disease activity in systemic lupus erythematosus". Of course, there is no comparable study for Sjogren's patients yet.

The magic dose in the study was 1.8 g eicosapentanoic acid (EPA) and 1.2 g docosahexanoic acid (DHA) per day. Now I need to run to the store and see if I can get that more easily in pill form or liquid form. My initial research shows that you have to take a lot of pills each day to reach those totals. I'm hoping fish oil in liquid form will provide a more concentrated dose. A fair warning: the study showed that lower doses were not as effective in reducing the "oxidative stress" that contributes to heart and vascular disease in lupus patients.

April is Sjogren's Syndrome Awareness Month

According to the Sjogren's Syndrome Foundation, April is Sjogren's Syndrome Awareness Month. View letter from SSF CEO Steven Taylor explaining this year's campaign.

With that in mind, I'm hoping to round up a list of Sjogren's blogs, including Reasonably Well, Sjogren's and Me, the Sjo Girls at Cafe Chronique, and Young & With Sjogren's. 

Know of other Sjogren's blogs? Leave a comment, please!

Routine Ultrasound Monitoring of Parotid Glands for Sjogren's Patients

Sjogren's Syndrome slowly destroys parotid glands, as an autoimmune reaction scars the delicate pathways that deliver saliva to the month. Over time, this process can create blockages/lumps that flare up and are quite painful. And sometimes, this process can lead to the development of a special kind of cancer called MALT lymphoma. 

To date, there have been few ways to either monitor the parotids for cancerous changes or prevent the cancer altogether. The gold standard is a fine needle aspiration/biopsy of any troubling areas in the parotids (as identified by an MRI and/or a doctor's physical exam). Pathologists examine the removed tissue to determine if any cancer cells are present. But let's face it, who wants to have needles stuck into multiple parts of their face more than once in a blue moon? Not I. Regular MRIs of the parotid glands have also been used to monitor the parotids for the development of cancer cells. But they are expensive, time-consuming, and uncomfortable (I had one done a year ago, and had to wear a claustrophobic head cage to hold my head still during the scan). Another option is to remove the parotid gland altogether, but this is radical - it can lead to nerve damage in the face, and the surgery might not even work, because it is very tricky to remove every last bit of the parotid glands. 

Recently, an ENT suggested that ultrasound might be a less expensive, less invasive way to monitor my parotid glands on a regular basis. I will certainly need a fine needle biopsy of my parotids up front (I have some serious lumps and bumps), but after that, routine ultrasound might be a good way to monitor my glands without going overboard. It allows you to keep an eye on things without needles or head cages. Using ultrasound in this manner is a relatively  new technique, and I've had challenges finding an ENT office that can do it. I finally found the JHU Head and Neck Surgery team at Greater Baltimore Medical Center, and they apparently offer the service. (I called to confirm today.) My appointment is later this month - I can't wait to see if ultrasound will really work in my situation. If you are looking for this kind of service in your area, try looking for head and neck surgeons - they seem best equipped to understand Sjogren's parotid issues and identify cancers when they develop.

P Is for Sjogren's Being a Major Problem

My Sjogren's has really been acting up lately. So I've been doing a lot of homework. All focused on the letter P:

1. Periodontist. My gums have gotten so bad that my regular doctor referred me to a periodontist. A periodontist is a special kind of dentist that focuses on the roots of your teeth (the part of your teeth that rests just a little bit below the gumline). He's expensive. And he's got me trying all kinds of new things to keep my gum disease at bay: WaterPiks, Sonic toothbrushes, special toothpicks... It takes me 10 minutes every night just to do my teeth!

2. Parotid inflammation. Sjogren's causes progressive destruction of the parotid glands, which are salivary glands that sit between your cheekbones and your ears. This fact sheet on mumps includes a great image showing where a parotid gland is. In Sjogren's, your immune system attacks the parotids, causing localized infections and chronic, progressive scarring. Saliva cannot flow easily through the scarred, inflamed glands. The immune system doesn't destroy the parotids all at once, but does so a little at a time, in flare-ups that cause swelling and pain. I had a terrible flare-up a few weeks ago, as a little, hard lump formed behind my left earlobe. I couldn't sleep. Eating hurt. So off to an ENT I went. He gave me some antibiotics, which can sometimes ease the pain and puffiness (if there's an infection in the gland, the antibiotics wipe it out). It helped a little. But I have a new to do: go see an ENT who specializes in head and neck cancer and can offer me routine ultrasounds to keep an eye on my pesky parotids. (Sometimes, cancer cells can develop.)

3. Prednisone. My number one problem with Sjogren's is that it wipes me out. So much so that I can only work a few hours a week, and need ridiculous amounts of rest in between activities of any kind (even riding in the car). My doctor hunted for other causes of fatigue (there is no blood test that will magically tell you "Yes, she's exhausted and yes, it's because of the Sjogren's"). She thought about it and ordered tests for months on end. We haven't found anything else that would obviously be making me so freaking tired. So she decided that a short course of prednisone might calm down the Sjogren's and allow me to feel better. It's working so far, which is terrific. But it's not a long-term solution (long-term use of steroids like prednisone can cause serious problems, such as osteoporosis, weight gain, and diabetes). So now I have to figure out what I'm willing to try next. A stronger immune-suppressing drug? Those can have nasty side effects, too. I guess I will find out at my next doctor's appointment.