Hi I was wondering if anyone with Sjogrens Syndrome have had Neuropathic symptoms. I am on Mepacrine for over 2 yrs now with no problems. Really helped fatigue. have skin Lupus On Methotexrate 8 months.
Monday I woke up with numb arm from elbow down and very unsteady when tried to walk . As I had a stroke in Jan thought it was happening again. I went to my rheumatologist on Tue and he said it was Neuroparpathic symptoms unusual but he has seen it before. He has contacted my Dermatologist and suggested coming off Methotrexate and starting on Azathioprine. Has anyone ever had these symptoms or taken this medication.
Thank you.
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Hi.sorry I cant help with the symptoms side of your post but I have taken azathioprine. Unfortunately it didnt work for me i managed 7 weeks on the drug before I started being sick 2 hrs after I'd taken it.my kidney specialist ( I have lupus nephritis as well as sle and sjorgens) stopped it and did bloods.i had developed drug induced hepatitis.i had to wait 3 months for my liver to recover before I could try mycophenolate. I also take pregabalin for nerve pain.good luck I hope it works for you 🤞
Yes. I have lupus. I just posted about this and you can go through my old ones too. My picture sounds similar. I got lupus from my dads side and some weird neuro stuff came from my moms. Never been diagnosed with sjogrens but my rheumatologist seemed highly suspicious of it in the beginning.
I’ve had unilateral weakness, facial droop before with negative MRI for stroke. That was 2 yrs ago. Steroids helped with that tremendously. Also have dysphagia with mild aspiration and esophageal dysmotility - both attributed to neuropathy. I have been very off balance since December 2019. Can’t walk a heel toe to save my life. Saw neuro optho and he suggested IVIG. Said I have neuropathy of the vestibular nerve. Just started IVIG yesterday so don’t know if it’s working yet.
I have tried azathioprine. Seemed to work well while on steroids. Really no issues other than headache when I got up to 100 mg. They had to take me off of it because it raised my liver enzymes. I did try it again off steroids and that was a huuuuuuge mistake. Had a very bad reaction. I can’t take MTX bc docs fear it’ll cause unchecked EBV and possible lymphoma.
We are zebras. But this stuff does occur and it causes true motor problems for me only in cranial nerves along with dysautonomia. My EMG/NCS was completely normal so it’s not a myopathy or something.
Hope this helps if even a little. Sending hugs your way. ❤️
Thank you so much this is all very helpful. I have thought my swallow was off for some time . Like I had to think before I swallow . After episode on Monday I keep thinking I have something like a tablet in my throat which I can’t clear? Good to speak to someone with similar symptoms as sometimes it’s easy to think your turning into a Hypochondriac!! Will read your other posts also. Again many thanks 👍
No problem. Yep... and on esophagram imaging the pill does get stuck for me. Takes me about 10 swallows before it goes down. I choke on my own spit sometimes. It’s definitely real. Just sucks because there is no test for neuro stuff. You have to be bad enough symptomatically and on physical exam for someone to notice and care. It took blurred vision and horrible nystagmus for anyone to notice. Like can you drive okay bad? When neuro asks that... you’re in trouble.
Thank you so much for all the information it is so helpful.
I am feeling a lot more mobile this afternoon and the terrible fatigue and brain fog has lifted. The heavy numb hand and unsteadiness when walking there. I wonder how long it will last.
If it lasts longer than days, I certainly would ask for a CT or MRI of the brain just to make sure. That’s just my opinion given your prior history of stroke. Btw, are you on anticoagulation for your old stroke?
I was diagnosed with Sjogrens Syndrome and then a year later SLE. I tried Hydroxychloroquine and then Mepacrine which worked at first but then my symptoms started getting worse again and it started giving me some side effects. I then tried Methotrexate but kept getting infections and kept having to stop it to go on antibiotics and then re start it so came off that and went back onto Hydroxychloroquine for the Sjogrens which mainly helps, especially with the dry mouth before I struggled to say a sentence without having a drink of water. I also started Azathioprine in March for the SLE. It took 3 months to notice a difference on the Azathioprine. The side effects I had were nausia, indigestion and worse headaches. I would take Omeprazole once a day to help with the nausia and the headaches have eased off to just my normal headaches now. When I did go from 50mg to 100mg (about 3 weeks from first taking it instead of the suggested 4 weeks as I had Costochondritis) the first time I had a bad turn and had to sleep for 14 hours and couldn't do anything so I went back to 50mg and tried the 100mg on the fourth week and tolerated it better.
I have had the numbness down my arm, it went from the elbow to my wrist but I was awake just watching TV, not sure if it was to do with the Sjogrens or SLE but I have been having more trouble with my hands so will be seeing my Rheumatologist about it on my next appointment.
I've found Azathioprine is the best one to work for me so far but everyone is different and it's probably best to try and see which works best for you.
Thanh you for all the information it all helps. When I saw the rheumatologist on Monday he said the numbness in the arm was a symptom of Sjogrens . Not so common but he has seen it. I hope to see Dermatologist next week and make decision about the Methotexrate. I live in Dublin and there is no Lupus or Sjogrens association here. With regard to health services here they are so overstretched it can take months to get Specialist appointment. Because of this a lot of people pay Private Health Ins ( very expensive) especially now not working. But it means you get apt much quicker if Consultants have private patients in private hospitals. I have tried to keep all 3 consultants I am attending in one hospital that way they know each other and communication is quicker which I think is an advantage.
I hope you get your apt soon to check out your arm.
No but I have taken Tegratol for nocturnal seizures for about 20 yrs Take less than min amount as could not tolerate 400. Have only ever had 2 seizures. I am attending Hospital for Stroke I had in January.
I am on methotrexate and was moved onto Azathioprene right uptown the max dose of 150mg. It did not seem to allay any of my symptoms so I was put back onto MTX. I still get weird sensations in my legs feet toes, which feel like someone is stubbing a cigarette out on them. My feet are currently making my life so miserable. Here is Wales I haven't seen my Consultant for 18 months.
Gosh that’s a lot of medication to cope with especially if still having symptoms . It’s a long time to wait for follow up apt. The sensation in arm and leg not so bed today. Arm still a bit heavy and leg wobbly but no pain at all. Will let you know next week If I get any more detail on this problem when I hopefully see Dermatologist .
Hi I was diagnosed Sjogrens first too then a year later told me SLE as primary disease. I get numbness one side of face arms feet. If i tripped on a kerb or stumbled used to set off a whole body numbness tingling electric shock type feeling over whole body. Have had nerve tests. Nothing dhowed up. I have strange episodes where i can be fine one second then the next i am aware of whats going on but its like someone has plugged me in to an electric socket. I can feel buzzing in my brain and electric type shocks all over. I sometimes have a tremor too. I can only communicate by holding up a thumb to let people know im ok. I feel i dont want to move or speak. Shirtest lasts couple minutes longest and just a few seconds st over half hours. Had mri brain shows white matter lesions but ok. Cannot find a reason. Thought was mini stroke first one but not. Have them irregularly. Could have none for a few weeks then three or four big ones within days. Docs gave no answers just my conditions! Put me on amitryptiline and gabapentin for nerve pain specifically and longtech for other pain plus the udual tray of stuff. Hope some of this helps. Just good to know someone else has similar sometimes. 😊
Almost forgot have had swallowing problems. Had assessment and the best tip i was given by the physio was if you are having difficulty swalloeing sit up straight and tuck your chin down towards your chest. Its the complete opposite of what you feel yiu want to do. I sometimes lose the ability to swallow for a minute or so at a time. Possible link to taking gabapentin but not sure.
Hi i have Sjogrens for years now, last year had terrible spasm in thigh muscles with stabbing pains in leg muscles numb cold feet hands numb and cold started tripping and falling, saw a neurologist he ordered biopsy of leg and calf muscles showed peripheral neuropathy axonal neuropathy, EMG and Scans of brain many labs to rule out other disease diagnosis after all that work up is axonal and peripheral neuropathy Autonomic neuropathy, i will be having testing for the autonomic dysfunction part next month that causes sweating dizziness heart palpatations dizziness blood pressure issues and more i may need a med for that if test shows needing it. I will be starting infusions of Gammaguard next week for 12 weeks to help with the peripheral neuropathy i am hoping it helps as it is progressing to where i can hardly walk normal some days. Hope this helps.
Hi thanks for your reply. Luckily I had no pain just needed to hold on to furniture when walking and arm was heavy to lift and numb. Yes I noticed the cold, my whole body particularly the hands and feet. Walking and hand back to normal.
I am due to see the dermatologist on Thursday and the rheumatologist was to contact her re neuropathic pain and make decision re medication. (Told to come off Methotexrate for now).
I had a MRI back in Jan when I had stroke so not sure if that will be sufficient to confirm what they are dealing with.
It’s so helpful to hear from people with similar symptoms.
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