Autonomic neuropathy

I was diagnosed with RA in 2009. It's been queried if I may have seronegative SLE, although this was a while ago and it has not since been discussed.

I'm asking on here as my gastoenterologist said that autonomic neuropathy is more common in people with lupus of scleroderma.

It's taken a while but gastro and rheum have diagnosed autonomic neuropathy. This explains my stomach disorder (gastroparesis), abnormal heart rate, shortness of breath and a few other random symptoms that I've never even considered investigating.

I've been prescribed 4 new medications, which gastro hopes will help manage some of my symptoms. Rheum said that I clearly have inflammation but she's concerned about my repeated infections and remains cautious about overloading me with immunosuppressants. Both said that this type of neuropathy is not that common with RA but not unheard of either. I was curious if anyone else has this and how it's managed?

9 Replies

  • Hello crashdoll. Am glad for you👌👍: good going!

    What meds have been prescribed?

    If you have a significant history of persistent complex recurring infections, rheumatology should be testing your immunoglobulins, white blood cells of all types (lymphocytes, neutrophils etc) etc etc and if the results are low (especially if these are low consistently) my own experience is that you should be referred to immunology for fuller profiling. Eg in my case, I have both an early onset immunodeficiency and infant onset lupus. The immunodeficiency existed way before treatment with immunosuppressives for SLE when my infant onset lupus was finally re-diagnosed and systemic treatment begun 4 years ago. I continue on daily immunosuppression meds (hydroxy + myco + pred tapers) even when I have infections. Immunology has me keep home emergency kits of prescription antibiotics (high dose and longer course than for normal patients) and I see immunology as regularly as I do rheumatology & all the other multi system hospital clinics monitoring my secondary conditions..including chronic upper & lower GI conditions (gastroporeses, oesophagitis, gastritis, IBS etc) & neuropathies agogo

    For what it's worth, I've got sero neg SLE & sjogrens, and am being watched for vasculitis BUT at 62 (after 4 years on lupus immunosuppression) have less infections and am feeling better than I have since my 20s in the 1970s. Yes, managing all my health issues means a lot of lifestyle tactics & meds taking, but: it's worth it! This seems to me all about risk benefit assessments, trial & error and taking the diagnosis & treatment process 1 step at a time, keeping calmn & carrying on...being the empowered patient who somehow manages to actively collaborate with your Drs even when you're feeling doubt you have plenty of experience of all this

    Hope this helps

    Looking forward to your updates (please keep us posted)


    PS my neuropathies are basically monitored regularly and managed via my lupus meds, and my GI conditions are handled similarly + managed via prescription oesomeprazole, domperidone as required, + constantly sipping fresh ginger tea & mainly sticking to an anti inflammation diet + lots of common sense lifestyle stuff (small meals, sleep with upper body raised, avoid tight clothes etc etc)

  • Hi Crashdoll. I think I have autonomic neuropathy as part of my multisystem connective tissue disease - which as you know has so far only been diagnosed as seronegative RA - although my RF was a weak positive of 24 when tested in 2011.

    I believe autonomic neuropathy often affects those with primary Sjogren's as well as Lupus, Vasculitis and Scleroderma - as does small fiber neuropathy which I have too.

    I asked about more specific tests for AN while having an EEG recently but the neurophysiologist said that apart from the standard nerve conduction tests there was nowhere she knew of in Scotland which tests for this. I think if I was younger than 52 this might be associated with POTS but maybe wrong. I sometimes use an international forum called NeuroTalk which has a whole discussion group relating to AN and people on there are terribly knowledgeable - mostly American as far as I can tell.

    I don't have Gastroparesis but I do have periods of severe Reflux - although I must say that things have been much better lately so maybe my gallbladder removal has helped with this symptom. My longstanding dizziness has also settled down recently which is wonderful although again I guess that autonomic neuropathy can wax and wain and affect different parts of us at different times. My classic Sjogrens type symptoms are bad just now and my heart rate and blood pressure are very high all the time.

    But the lack of temperature regulation is the thing I'm most aware of. I went through a year of not sweating at all despite exertion and now wake every night drenched in sweat. During the day I am often freezing- extremities especially but get these warm heat surges.

    Doctors have usually observed that I'm at menopausal age (not my new rheumy though) re sweats but I actually had my menopause relatively early and it's done and dusted and I don't think it's this. I am also hypothyroid and am presently being tested for Hughes Syndrome - which could be responsible for various symptoms if it comes back positive. I suspect all this is going to come under the heading of Undifferentiated Connective Tissue Disease for me although the RA presented very classically for the first two years so maybe this label will stand for my new rheumy too.

    Like Barnclown I'm intrigued to know which meds you have been prescribed for this?

  • Hi T, wow you've just described me!!! Can't wait now to have all these tests done. I will definitely let you know results and what diagnosis/treatment. Babs x

  • Sorry I wasn't very clear about the medications, they are all to treat the symptoms of gastroparesis; lansoprazole, domeperidone liquid, cyclizine and metaclopramine, although I am holding off on the latter. Gastro is a specialist professor in gastroparesis and advised that if we can settle the underlying cause, we can manage the GI disorder. He suggested infliximab which rheum also agreed would be the next one for me. I'm loathe to try this as it's an infusion and I have a real 'thing' about cannulas. Rheum has taken some convincing to see the bigger picture. She once referred to my gastroparesis as "your reflux" and I nearly hit the bloody roof. I'd love to have only reflux. I am lucky (?) that the tests I had show very pertinently that food is not moving from stomach to small intestine and nerve tests showed that the vagus nerve is sending the wrong signals.

    I'm not sure this would have been diagnosed but recent heart concerns helped create the bigger picture. They can hear my abnormal sounding heart beat on physical examination, so again lucky that it's all presented very classically. Apparently my age assists the diagnosis. I have been on gastroparesis forums for a while and autonomic neuropathy patients tend to be around my age.

    I am also 100% positive that my repeated infections are due to being immunosuppressed. I was on humira (biological anti TNF), MTX and leflunomide. I was never prone to infections at this level until they started me on biologics.

  • Sorry if this is a bit garbled, I'm still processing information and feeling quite emotional. I was diagnosed with gastoparesis quite a while ago but the local gastro was convinced it was "just one of those things". I never, in my wildest dreams, imagined this would all be connected.

    I feel upset about it all and not really coping with the idea of considering infliximab. I happily inject myself but cannulas are just a horrifying thought for me. :( That said, I desperately want to get better and my gastroparesis has begun to get worse and I'm now getting quite ill with it. I'm scared that it will progress to the point that I'll need tube feeding which is just as horrible as the thought of cannulas. I know it's pathetic to be so scared, I'm usually quite brave!

  • Crashdoll, I want to give you and long soothing hug. I, too am scared of this bloody illness. But it is here and I've got to deal with it. There are many days when I feel as the doctors say - F.I.N.E. - but today, i'm in pain, angry, and so so tired - good cry, and keep telling the bloody thing it is not going to beat me. The sacredness will pass its just really really hard dealing with it at the time and those closest to you think that because you look well everything is "normal" it just so infuriating. I keep saying to my hubby, shall I put a bandage on my head I might get a little sympathy from you, instead of asking whats for dinner you might ask me what I want!!!!! (that's my rant over - phew feel better for that).

    Please stay with it. Keep talking to the forums and hopefully you will feel better soon. Babs

  • Dear crashdoll: am also giving you a big gentle hug! Nothing about any of your posts seems "a bit garbled" to me! I think you explain all your diagnosis & treatment stuff vvvv clearly & concisely: you know your stuff! And I think you explain how you're feeling about this stuff in the most eloquent & moving way any human heart could: am giving you another big gentle hug. Thank you millions for explaining everything: you help me (all of us) just by doing this so beautifully. You've been through & are going through a lot (understatement of the year😉) and I am hugely inspired! Thank you! Am hugging you again 😘🍀🌻

  • We all have things that terrify us Crashdoll. I don't like cannulas much - have had about 12 this year. But I would put up with more without anxiety if I had to.

    However I spent a week in a tearful state in anticipation of an endoscopy and had to fight for sedation by saying, in all honesty, that I would only have one if unconscious.

    But just think wouldn't it be wonderful if Infliximab made your very multisystem RA go into remission? You deal with some awful things with much courage and as a young person you have many years ahead of you - so I do hope you can overcome your phobia of cannulas. Tx

  • Hi crashdoll !

    I can certainly relate to your condition. I have gastroparesis and I take domperidone for this.

    For the best part of three years I had been prescribed omeprazole, (awful for me) and then Lansoprazole (equally awful) until now when I decided to give the ppi's up and just try to manage my condition myself. Hard absolutely! but just about coping.

    My nervous system too is not functioning as it should. I was sent to a neurologist I think around four years ago and left in tears. (kept it together during the appointment) To this day he was the most intolerant professional I have consulted with. Not a great experience ! He did mumble something along the words to me as small fibre neuropathy.

    However it was quite a while after that I was diagnosed with the gastro condition. I also have problems with the facial nerve, in particular that of the eye, which was botoxed yesterday!!! Still trembling today but the opthamologist said it would take 3/4 days to be effective.

    My gastrologist also said that the stomach sphincter could also be treated with botox but as I am not nauseous it would not be worth my while.

    My blood work is out as well. I am under the care of a haematolgist whom I consult with again this week.

    I have had a weekly positive ana test but I have not had a complete diagnosis. Only individual systems if you like. eyes heart blood etc.)

    I think we sound quite similiar!?

    Take care,

    Midge :)

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