SLE and autonomic neuropathy

Hello,

I was diagnosed with inflammatory arthritis in 2009. Rheumatologist felt I had seronegative SLE but wasn't 100 percent sure. He sent me for a second opinion but this rheum diagnosed Rheumatoid Arthritis. I've retained this diagnosis ever since with my current rheum declining to re-test my antibodies as she says "they're expensive and the treatment would not change". My arthritis was very erosive in the early years but the joint damage has slowed considerably on injected MTX and anti-TNF therapy. I also had eye inflammation that has now settled. For me, the diagnosis didn't matter. It was just important that my symptoms are better controlled. I am not in remission but I'm better than I was.

Now, I am wondering if I should request another review. I have been diagnosed with Autonomic Neuropathy; gastroparesis (delayed gastric emptying), orthostatic hypotension (blood pressure drops when I get up) and postural tachycardia (fast heart rate) when I move around. Gastro (who specialises in this area) said that Autonomic Neuropathy is quite uncommon with RA and more common with SLE. He said said that he can treat symptoms but we need to treat underlying disease.

Does anyone else have AN? What has been the treatment plan? Thanks in advance. :)

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  • Hi Crashdoll

    I don't have an answer to your question as such but I wonder if perhaps you have some overlap disease ie MCTD involving SLE and RA which might explain your symptoms?

    Sorry I can't be any more help. Hopefully someone else will be along soon.

    Clare x

  • Hi Clare,

    I wonder if I do have some overlap. My symptoms do seem to be more clearly RA to me. So, if I did have SLE in addition, the other symptoms are relatively mild (skin - photosensitive rash and ulcers) it wouldn't change things massively. This is why I never felt I needed to request a review, as I wasn't convinced it would change things much.

    Due to my RA, I have a yearly cardiovascular check (ECG and bloods). I have monthly bloods which check all the usual; FBC and kidney function. I had some very minor changes on a lung CT scan and on lung function tests, so they'll repeat them in 6 months. All in all, I am being closely monitored.

    I will have a chat to rheum nurse when I next see her. I am fortunate enouh to have private health insurance, so if I really wanted, I could have a very specialist referral quickly. However, my excess is £500.00 and I need to weight up if I really want to spend that amount of money!

    Thanks for your reply. :) x

  • Hello crashdoll. Sorry, I don't actually have diagnosed AN, but I do share diagnosed AN-type conditions. In my case these conditions are of longstanding. At 62, I'm 5 years into being effectively treated for what has turned out to be infant onset SLE (hydroxy + myco + pred + amitrip). this treatment, alongside all my other treatment plans (gastro, ENT etc etc) + lifestyle management, is helping quite a lot with my AN symptoms...ok so my AN stuff hasn't cleared up altogether, but it is mainly at a level which is more easy to tolerate and it doesn't seem to be progressiing (of course, the AN stuff flares when I'm low (in a SLE flare, have a infection, am undergoing an operation etc)).

    My lupus clinic chief and I have agreed that so long as these AN indicators continue to be reasonably responsive to my SLE treatment plan

    + lifestyle management etc there is no need for referral for AN investigations

    Are you continuing to receive treatment (the injected MTX & anti TNF therapy)? I'm glad this has damped down some of your symptoms. But if other AN-indicator symptoms aren't significantly responding to treatment or seem to be increasing in intensity, yes I would for sure 👍 request a review from a mixed connective tissue disorder/lupus-experienced consultant.

    What's more: since your gastro consultant has actually raised the possibility of another underlying condition, and the importance of diagnosing this, and as he has specified SLE, it seems to me that he is, in effect, recommending a review by a mixed connective tissue disorder/lupus-experienced consultant.

    Am looking forward to reading the replies as they roll in. Hope you'll post updates

    🍀🌻 coco

  • Hello Barnclown,

    I'm sorry you are experiencing similar symptoms. It's just no fun! I find that, on their own, I can tolerate them but, as a collection, I just get overwhelmed. Last night I went out for dinner; only had chicken and rice but even that was too much and I was vomiting until 2 am. Of course, then everything was out of whack so I every time I attempted to crawl to the toilet, I was semi blacking out; losing my hearing and all.

    I am still on injected humira fortnightly and MTX. I have occasional flares but overall, I feel happy with my dampened down joint symptoms. Gastro was of the same opinion. He said although my joint and eye inflammation has significantly reduced, he believes there must be active disease or else my AN symptoms would be better managed.

    As I mentioned to Clare, I do have private health insurance and did wonder if I should ask my GP to refer me but I've got a £500 excess. I'm not convinced that I want to spend that money right now, especially with Christmas rolling around! I might have a think about it and speak to gastro again because he's a hero in his field and I trust his opinion much more than most other medical professionals I've seen.

    If you don't mind me being nosy, what are you taking for your GI symptoms?

    Thanks for taking the time to reply to me. I really appreciate it. :)

  • Hello again. I would speak to good guy gastro again: he'll respect that you've taken his comments into consideration + the amount of careful thought you're giving this. He may even be able to suggest a rheumatologist...perhaps there is another lupus patient they are treating together?

    Excuse my bluntness, but: it's not good you're having AN symptoms as severe as you've described. I feel very concerned for you. I'm so glad you've posted about this & I do hope someone with more experience replies

    Am happy to tell you a bit about my version of this, but apologies first...because I struggle to be brief!

    My AN stuff is of long standing but since my lupus was re-diagnosed, this stuff is only as severe as you're describing when I'm more poorly generally. E.g. now I'm on my lupus meds, normally, I can cope with my usual level if AN symptoms on a day to day basis via lifestyle management (eg pacing myself, sticking to foods I can keep down let alone tolerate, hydration inc sipping fresh ginger tea etc). But my NA stuff did flare a few weeks ago in response to my first IV zolendronate infusion at hospital for osteoporosis. So, for a few days I just sipped water & slept: the vomitting settled quickly and I stuck to tiny portions of dry toast all week.

    But back in the year of my 50th birthday, 2003, I went into a ghastly flare of GI + my sort of AN stuff generally, but the upper GI stuff seemed the most severe...so I was investigated thoroughly by gastro consultant & put on daily domperidone & oesomeprazole. I was on daily oesomeprazole 40mg for 6 years, while gradually going over to only having domperidone during flares. Meanwhile I went onto a strict antiinflammation diet (totally avoiding soya products, which are a big trigger in my case). Those 6 years were also when my lupus & sjogrens symptoms began to become more severe, I was more debilitated generally, at home most of the time, resting a lot & feeling quite low. But ALL of that 'go gently & go slowly' did seem to help me get my AN symptoms back to a more tolerable level. After 6 years of that, my GP told me I'd never come off daily oesomeprazole, but I decided to try anyway...partly because I'd learned this can interfere with bone density. I did, hurrah, find I could pretty much control the AN gastro stuff ok, but the lifestyle management had to be v conscientious (diet, eating little & often, some exercise, erect posture, sleeping on an incline, no tight clothing...etc etc...all that sort of stuff)

    Now I only take osemeprazole when am on meds that stir up my chronic upper GI symptoms, eg high dose long term antibiotics, and even gastro resistant pred doses higher than 3.5mg call for daily oesomeprazole. And back when I started both hydroxy & myco, my dr's specified I had to have gastro friendly makes (plaquenil & Cellceptb+ gastro resistant pred), but even so I needed daily oesomeprazole 20mg during the first 3 months of my body adjusting to both these meds. AND, my lupus clinic & I know for sure that my daily therapeutic doses of hydroxy 400mg + myco 1000mg + pred 3.5mg + 20mg amitriptyline DO help me A LOT to keep my more chronic neuro symptoms damped down (eg dizziness etc)....all of which my doctors attribute as much to SLE as sjogrens, but I also am ehlers danlos type hypermobile which affects all my connective tissues especially those involved in cardiac & vascular function

    Hope something in there is useful to you

    Please keep in touch

    🍀🍀🍀🍀🍀

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