I was diagnosed with inflammatory arthritis in 2009. I was negative for Systemic Lupus antibodies but my rheumatologist said "most likely Lupus". My second (and current) rheum feels it's fairly classic RA due to my joint damage. I am on an aggressive treatment regimen, so not overly fussed about the label. I'm in the UK where it doesn't seem to be as important, maybe because we don't have medical insurance? If it was SLE, it'd be very mild anyway. That was what my first rheum said and I trust his judgement.

In 2013, I started vomiting daily and getting horrendous stomach pains. I was diagnosed with Gastroparesis. I saw a professor who specialises in GP and did lots of tests and found that my muscles contract but the vagus nerve is not working as it should. He stated that it was unusual to have autonomic dysfunction with RA but not unheard of....although he did ask my rheum to re-check lupus and other antibodies as it'd been a few years. She said no, due to cost. Gastro thinks we need to get my autoimmune disease under control but rheum argues that it is under control. Technically, she's right; my joints aren't swollen and my inflammatory markers are fine. My other symptoms are pretty horrendous though.

In early 2015, I started getting episodes of breathlessness and a cough. I was anaemic (low iron and B12) but this improved and my symptoms didn't. I was checked for rheumatoid lung disease, found to have a mildly reduced lung function but it was felt I was breathless from reflux and referred back to gastro prof. He changed my medication and I had some improvement. I've just learned to live with it, to be honest.

In mid to late 2016, I started having passing out and semi 'black out' episodes. I mentioned it to gastro who did basic tests and found that my heart rate rises on standing and my blood pressure drops a lot. He referred me on to a cardiologist who said it is autonomic dysfunction because b/p doesn't drop instantly which indicates dehydration but it takes between 1 and 3 minutes. I'm starting midodrine and deciding whether I have the guts to brave a tilt table test.

So, I'm on meds for blood pressure and gastro symptoms and will likely end up with meds for my heart rate but is my GI right; do I need to dampen down the overall autoimmune disease even more? Or are we doing the right thing by treating my symptoms?

I've missed important things out, no doubt, but this is long and I didn't want to bore everyone.

Thanks in advance.

Hi Starburst, what is the treatment for your other autoimmune? The R.A or SLE?

I have the same pickle. I did have treatment for my original rheumatic type autoimmune. My nerve pain did feel better on this I feel. But I got worried about the poss risks of the treatment I was taking on the nerve damage. That's another story. Pretty sure it flared badly after I stopped treatment for the original. The original autoimmune also flared up again and stayed bad!

It's hard to know the answer. My rheum thought the neuro problem was related to the original autoimmune (A.S). However I amnin contact with numerous people who have A.S - none of them have the secondary nerve issue. So, I believe you can treat the original problem but it won't neccessarily address the nerve related problem. But you won't know until you have been on treatment for some time. I think the immune modulating treatment for Autonomic neuropathy is also ivig? Ibhad and still dobhabe the same question as to whether you could have ivig and another immune modulating treatment for the original autoimmune at the same time. My rheumatologist didn't know the answer to this.

Thanks for your reply. Food for thought.

I'm on methotrexate injections (15mg weekly) and humira (40mg fortnightly). My gastro felt infliximab would be a good option but rheum has held off, mostly on my account, to be honestly. While my body is doing weird and wonderful things, I don't want to add something new to the mix unless absolutely needed. My current combo works well for my RA and I don't want to mess with it; my RA is an aggressive beast.

You may want to consider posting your questions on the Arthritis and Autoimmune forums also, to get more feedback.

Hope someone will come along and be of assistance.

Hi Starburst, Sorry to hear about the autonomic dysfunction progression.
Have you considered Rituximab ? Here it is given for RA.
I have some neurological problems, most of them autonomic and it is probably caused by an autoimmune disorder. I got Rituximab and it helped tremendously with the POTS (high HR when standing).
Maybe you could pay for the antibodies tests that your gastro recommended ? if they are positive would it be easier to justify more expensive treatment?