Men Get Sjögren’s Too: Ray’s Experience with Peripheral Neuropathy

For Men’s Health Awareness Month, we are highlighting three men with Sjögren’s and their stories, to show the heterogeneity of the disease and provide awareness that men can get Sjögren’s too! 

Ray, age 60 who was diagnosed with Sjögren’s disease at age 44, experiences peripheral neuropathy as his most debilitating symptom. Below is more about Ray’s experience as well as information about peripheral neuropathy in Sjögren’s. 

Ray’s Story Living with Sjögren’s and Peripheral Neuropathy

Can you describe your experience with your Sjögren’s diagnosis? 

I was told by my primary care physician that they thought I may have muscular dystrophy. I went to a muscular dystrophy clinic at Emory University Hospital in Atlanta, GA. After nerve and needle studies, they agreed that I had peripheral neuropathy in my feet and legs. I was referred to Emory Rheumatology to see Dr. Jonathan Waltuck. After an examination and more labs, he diagnosed me with Sjögren’s at age 44. It took a minimum of four years to be diagnosed. I do feel that I probably had Sjögren’s in my late 20s to early 30s. The symptoms are insidious at their onset and can readily be excused away, especially for a man.

What has your experience been as a member of an underrepresented group with Sjögren’s? 

When I was insured by one of the major HMO (health maintenance organization) companies, I was sent to the psychiatrist because I was told that I had general anxiety disorder and there was nothing wrong with me. One doctor even pushed me back on my shoulders and told me to get out of his office because there was nothing wrong with me! 

I have been told by numerous doctors that I had nothing wrong with me even though I had obvious abnormalities in my labs. I was told that the lab abnormalities were “non-specific”. I was told “you’re a man and men don’t get Sjögren’s!”

Are there any symptoms or conditions you believe are specific to male patients with Sjögren’s that you think other men with Sjögren’s should be monitoring?

Everyone’s Sjögren’s journey is different. I believe there may be many more common denominators to consider as common for men with Sjögren’s, we just don’t know. A few that come to mind are peripheral neuropathy, GERD (gastroesophageal reflux disease), lack of sleep, and more. GERD is really an ominous factor as uncontrolled acid reflux can damage the esophagus that may potentially lead to cancer. Peripheral neuropathy can readily be excused away, as in its early stages, in my belief, may feel like water under the feet, or a string tied around a toe, or even being diagnosed as Morton's Neuroma. 

What would you like to see from the medical community in terms of acknowledging Sjögren's in men?

My biggest surprise is how little truths that are actually known in the medical community, especially on the subject of men with Sjögren’s. “Oh, it’s just a little dry mouth and a little dry eye!” is one of the biggest misnomers that I hear all the time. Unfortunately, I have also discovered that it seems that many men may not be taking their Sjögren’s diagnosis as a serious issue to be dealt with. 

I would like to see more information on things such as tinnitus, prostate issues, neck and back issues, fibromyalgia, POTS (postural orthostatic tachycardia syndrome), and dysautonomia. There are so many complaints about these related issues from men. I feel there is some validity as to Sjögren’s being a culprit with these things. I know that many in the general population may suffer from some of these issues as well, but let’s for a moment key in and look at these under the spotlight for men with Sjögren’s and not keep dismissing these bothersome issues!

Can you share more about your most common symptoms and your most debilitating symptom? Have you found ways or tips for managing these symptoms and living with Sjögren’s?

Sleep: Believe it or not, one of my worst issues is lack of a good night’s sleep! One of the best things that I’ve done to work with Sjögren’s is to see a sleep neurologist. I have used CPAP for about eight years now. It is a life changer! It’s true that because of Sjögren’s, I do have sleep issues, however, I have helped to eliminate other issues that cause a sleepless night by using my CPAP and keeping my appointments with my sleep doctor and keeping my equipment up to date. 

Dry eye: I use prescription medroxyprogesterone eye drops that are made in a sterile lab. A disclaimer that I have is that some insurance programs may not cover this. I’ve been fortunate that my insurance does cover this. 

Dry mouth: My #1 go to product is for dry mouth. I use Carifree oral rinse. A prescription is not required, and it can readily be found on Amazon. I also rely on sugar free candy to help keep my mouth moist. I may begin keeping a bottle of water bedside as well.

Peripheral neuropathy: My most debilitating symptom is peripheral neuropathy. I take gabapentin and have had to increase dosage lately because of that, thus making it more manageable. Managing burning pain helps me with sleep as well. I also have a “double crush” in my left foot. I have a crushed nerve there that at times causes much worse pain than my neuropathy. Having a size 12 wide foot doesn’t help me much either when shopping for shoes. It is so hard to find shoes that fit, coupled with my crushed nerve and neuropathy! That’s why I do not often buy shoes. My wife has to make me go shoe shopping! 

Is there any advice you would like to share with your fellow men with Sjögren’s?

Don’t give up! Keep on going! Don’t immediately blame Sjögren’s for every new issue that arises! It could be something non-related to Sjögren’s. For example, I have a genetic eye issue that was unknown to me.  My retinal ophthalmologist discovered and diagnosed it. It’s called pattern dystrophy. I also took plaquenil. So the issue now was, is the eye problem caused by the genetic disorder, or is it caused by plaquenil? There is no known way to determine which one it is. Fortunately, I do go to the best doctors that know the most about these issues. The decision to discontinue was made that after 14 years of being on plaquenil. I’ve been off plaquenil now for two years with no known worsening effects from Sjögren’s since I have now discontinued using it. However, with that said, I do have some plaquenil damage. It is being deemed as minimal as compared to the genetic disorder. I can still see fine, just bothersome, and sometimes I just have to sit back and chuckle a bit to deal with it! So, again, I would implore men to stay on top of their health and remember not to blame everything on Sjögren’s as it may be something else to be managed separately. Be your own advocate! Get second, and even third opinions if needed.

When I first started this journey, I was told there was nothing wrong with me and then I was diagnosed with Charcot Marie Tooth disease, diabetes, muscular dystrophy, multiple sclerosis, ALS, PLS, and rheumatoid arthritis. I was also told that I had general anxiety disorder. I eventually shared with those doctors that they were giving me the anxiety! I had none of those! For the physicians that told me rheumatoid arthritis, I asked them why they diagnosed me with rheumatoid arthritis instead of Sjögren’s? They told me “Men DON”T get Sjögren’s!” They are ALL WRONG!

MEN DO GET SJÖGREN”S!!!!! 

Peripheral Neuropathy in Sjögren’s

Peripheral neuropathy is a general term for a nerve condition that can cause a range of symptoms, including pain, numbness, tingling, swelling, muscle weakness, and/or nerve damage. 

Although common in patients with Sjögren’s, peripheral nervous system involvement in its various forms (see Table 1) may be underdiagnosed. Most population studies on peripheral neuropathy in Sjögren’s are over a decade old and have small sample sizes, so it is difficult to determine the frequency of peripheral neuropathy in patients with Sjögren’s. Current research estimates that approximately 20% of patients with Sjögren’s have peripheral neuropathy¹ but the prevalence of neuropathy greatly ranges from 2% to over 60% in these studies.²

According to our Living with Sjögren’s summary, 83% of patients reported at least one diagnosed nervous system-related health condition with 61% of patients reporting that they experience neuropathy and 80% experiencing cognitive dysfunction (brain fog)³, a symptom that can be linked to neuropathy. 

The most common types of peripheral neuropathy in patients with Sjögren’s⁴ are:

• Mononeuropathy
• Large fiber neuropathy
• Small fiber neuropathy
• Demyelinating polyradiculopathy
• Ganglionopathy
• Vasculitc neuropathy
• Autonomic nervous system (ANS) neuropathy

You can find these conditions defined in Table 1 below. 

Table 1: Definitions of Common Neuropathies

Neurological Involvement and Peripheral Neuropathy in Men with Sjögren’s

According to our Living with Sjögren’s patient survey, men with Sjögren’s reported that they were more likely to be diagnosed with nervous-system conditions than women. Fatigue and neuropathy were the most experienced symptoms reported by men with Sjögren’s. Men with Sjögren’s also reported experiencing daily symptoms of neuropathy, approximately 20% more than women. Approximately 78% of men with Sjögren’s compared to 56% of women also reported that neuropathy had a major or moderate impact on their life over the past 12 months. 

Men also reported experiencing the following neurological involvements:

• POTS (postural orthostatic tachycardia syndrome)- 6%
• Neuropathy (numbness/pain in extremities/trunk; small fiber neuropathy)- 59%
• Autonomic neuropathy (dysautonomia, impairment to "automatic" bodily functions)- 14%
• Migraine- 27%
• Trigeminal neuropathy (facial/head pain caused by stimulation to the area)- 8%
• Multiple Sclerosis (MS)-like symptoms- 4%
• Vasculitis- 6%
• Brain fog (cognitive dysfunction)- 57%
• Anxiety/depression- 48%

Ray's story highlights the resilience required to navigate a complicated disease and diagnosis, especially for those who are part of an underrepresented group with an invisible disease. His story underscores the importance of never giving up and continuing to advocate for your health even when no one else believes you. His experience with peripheral neuropathy is a common one for patients with Sjögren’s highlighting the need for a multi-specialty healthcare team to manage Sjögren’s.

Thank you, Ray for sharing your experience living with Sjögren’s and helping to increase awareness about men with Sjögren’s!

References: 

1. Berkowitz AL, Samuels MA. The neurology of Sjogren's syndrome and the rheumatology of peripheral neuropathy and myelitis. Pract Neurol. 2014;14(1):14-22. doi:10.1136/practneurol-2013-000651
2. Pavlakis PP, Alexopoulos H, Kosmidis ML, et al. Peripheral neuropathies in Sjogren syndrome: a new reappraisal. J Neurol Neurosurg Psychiatry. 2011;82(7):798-802. doi:10.1136/jnnp.2010.222109
3. Living with Sjögren’s: Summary of Patient Survey. The Sjögren’s Foundation; 2022. www.sjogrens.org
4. Noaiseh G, Deboo A, King JK, et al. Recommendations for aligned nomenclature of peripheral nervous system disorders across rheumatology and neurology. Arthritis Rheumatol. Published online November 3, 2024. doi:10.1002/art.43050