I was recently diagnosed with neuropathy as well and I’m concerned about the potential for even more medications. I’m in the very early stages of this diagnosis, and my rheumatologist wanted a neurology evaluation before even considering treatment. I’m curious how many of you have both conditions and which medications help you manage your symptoms?
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I’ve struggled with painful neuropathy for years. I started taking naloxone last month and it feels like I’ve reclaimed my life. I used to have to be home by 3 p.m. with my shoes off or I’d be in tears. I was talking to my rheumatologist about it yesterday, and he mentioned he’s been using it for many of his patients.
I have trigeminal neuralgia and experience random burning, numbness, or sensations of being wet (even though I’m dry) in various spots, but I’m not sure if I have small fiber neuropathy. I also deal with dysautonomia, which is frequently part of the package.
It’s extremely prevalent and is one of the most frequent symptoms. It’s especially common in men, but it affects women too. One survey indicated it’s a significant issue for 56% of women and 78% of men with a Sjogren’s diagnosis.
Yes, I take Lyrica for it. I also have small fiber neuropathy, occipital neuralgia, and hemifacial spasms. If possible, try to find a skilled neurologist. Not many are knowledgeable about Sjogren’s, particularly the neuropathy aspect. I had one doctor who challenged my information but then got curious; after doing some research, he told me I was right at the next appointment, which was a first for me.
Over the course of a year, IVIG and biologics have improved things to the point where I no longer have issues with shoes, socks, or leggings. It can get better, just very slowly. I still have the very fast heart rate, though…
I went to the doctor for POTS and ended up with peripheral neuropathy as well (confirmed by EMG and a positive neuropathy panel). He immediately knew it was related to my Sjogren’s. My father lost his ability to walk due to CIPD. I’m starting IVIG as soon as I get insurance approval. It seems like these conditions are a trio for many people. Fortunately, my Sjogren’s and neuropathy symptoms are fairly mild compared to many others. The POTS is by far the worst part for me since it impacts my quality of life the most.
I was prescribed pregabalin and then gabapentin but couldn’t tolerate either. I was told tapentadol was my only option, but I wasn’t comfortable with that, and my GP said that while he’d refer me to the pain management team because he couldn’t prescribe it, he wouldn’t recommend it. That was over a year ago, and my rheumatologist finally decided to try steroid injections for my nerve pain. I had one yesterday. The injection itself was virtually painless, but the pain today is worse than the neuropathy, which affects my entire left arm and hand—I really hope it’s worth it because this is definitely not fun.
Yes, it’s very common. If I remember correctly, small fiber neuropathy specifically is a frequent complication of Sjogren’s, though you could develop any type. Everyone here can share what medications they take, but that shouldn’t necessarily influence your own care because everyone’s body reacts differently and Sjogren’s varies so much! (I’m not sure how unique this is, but this disease certainly has a lot of variability in the type, number, and severity of symptoms across patients.) So, as always, you need to consult your doctor and often go through some trial and error before finding the right treatment. I think I found the correct one for me on the second try from a different doctor a few months later. As the neuropathy worsens over time (unfortunately, that’s the reality), you’ll start to notice more quickly when you don’t have that medication, so don’t hesitate to take advantage of the treatment. It’s really just extending the amount of time you have a higher quality of life, which is fantastic! It can also help you stay healthier overall and delay other complications because nerve pain won’t be stopping you from staying active.
I have Sjogren’s, and a couple of years ago it progressed to cryoglobulinemia, which includes neuropathy in my feet. I’m on rituximab (an immunosuppressant) because of the cryoglobulinemia, but only because of the neuropathy. If I didn’t have the neuropathy, I wouldn’t be on the immunosuppressant. We also monitor the severity of my cryoglobulinemia based on the neuropathy. Rituximab is the only medication I take for both Sjogren’s and cryoglobulinemia.