Topical cream brings relief for PN

I read an article on the Mayo website cautioning the use of Ketamin cream. Be careful, it sounds dangerous. Know we try everything to help reduce pain because it can be so debilitating, but using this compound may be worse than the symptom you are trying to relieve.

Thank you so much for sharing these resources. I’ve just left the Rheumatologist’s office with an order for an MRI of my leg. He told me that leg cramps, if severe enough, can cause muscle tears. Could be why I am having swelling there, we shall see. Keeping better track of my water intake to prevent becoming dehydrated.

It sounds like you have a lot of pain to bear, I’m so sorry, pain is debilitating. We just have to keep asking questions and trying things until something helps. Good luck!

Yes, water is important. In addition to the drying symptoms of Sjogren’s, I have to take a lot of meds which are hard on kidneys. I fill up a 20 fl. oz water bottle and keep it with me wherever I sit. I find it helps remind me to drink plenty and it makes it easy to keep track of how much I drink.

I’m glad you have orders for an MRI. Best wishes and let me know how it turns out.

Hi. I’m sorry you are suffering. I have similar pain and neuropathy from Sjogren’s. I have Primary Biliary Cholangitis, which caused liver cirrhosis. I had a liver transplant last August. My neuropathy symptoms, plus severe back and join pain, started in the fall. I saw a neurologist in March who thought I might have Sjogren’s, as PBC and Raynaud’s Syndrome (which I also have), are all ancillary. So, labs confirmed it. Many people with Sjogren’s do not get these “extra glandular” symptoms.

My neuropathy continues to increase, although the sharp pains have declined unless I drive for a couple hours, then the pain in my right leg shin area limits my ability to stand. I’ve always ate fairly well, but as recommended by experts and patients regarding neuropathy, as well as for Sjogren’s, I eat no longer eat refined sugar or flour, I have a low carb diet, lots of anti-inflammatory foods, some suggested supplements, and walk a lot and exercise. So, I believe this is helping. I also take 200-300 mg Gabapentin at night.

My back and joint pain is quite severe, however, so my neurologist referred me to a neuromuscular MD who I see in September.

You’ll find excellent patient advice and resources on the Connect neuropathy discussion group, so when I joined I went through all of those. There is also a Sjogren’s discussion which you might find helpful.

This is a good website -https://www.sjogrensadvocate.com/. Ankther website has some good patient discussions on Sjogren’s- https://www.smartpatients.com/. And, there area number of other websites that are helpful. John Hopkins has one of the more detailed websites on Sjogren’s neuropathy. And, there’s medical journal articles you can find by web searching.

Are you under a neurologist’s care? I didn’t get anywhere with Rheumatology Department at John Hopkins, which is the regional medical center for my area. I hope your experience with your rheumatologist is helpful, I do think they are key for long term care.

Thanks again for the links, I am reading more and more about Sjogren's Syndrome. It can definitely affect the entire body in many different manifestations. I have not yet been seen by a neurologist, although I saw a Physiatrist for a nerve test to confirm my neuropathy diagnosis but I have not had an guidance as to what the test actually means as far as severity or prognosis. I am counting on my Rheumatologist to guide me in the direction need as things develop. Thanks again for this great forum to discuss issues we have. My husband is a great caregiver so far, but he really doesn't want to hear all the details. He assures me we will do whatever we need to get me the care I need. It's really up to YOU to do the legwork and calling and asking. Doctors seem to want to pinpoint one problem and focus on that, or send you on to a specialist, passing you off, as it were, to the next doctor. I'm not giving up.

Someone asked about side effects of using a cream compound of 5%ketamine/2%amitriptyline: the scrip lists generic potential side effects for amitriptyline and ketamine, but notes that these should not be expected when applied in a topical cream. I have not experienced any side effects whatsoever.

Does anyone know if you Can you get the ketamine/amitriptyline ointment over the counter, Or do you need a prescription from a doctor?