Treating AN symptoms vs. treating the underlying disease
 

I'm in the UK, so I'm aware things may be different but I really value your input.

I have Rheumatoid Arthritis and autonomic neuropathy which is strongly believed to be caused by my autoimmune disease. I've had RA since mid 2009 and my first concrete sign of 'something else' was in mid 2013. In the last 3 years, I have been diagnosed with; gastroparesis, intestinal dysmotility, orthostatic hypotension and PoTS. I've been having difficulty in emptying my bladder but we are trying to see if it is the impaction causing the issue or if I need further investigation. It has since been suggested that a sensory neuropathy is the cause of some other symptoms I've been having. Each specialist doctor has put me on medication to control various symptoms. However, my rheumatologist and gastroenterologist state that their primary goal is to manage the underlying issue which is most likely my RA. Unfortunately,my here is nothing concrete they can do to prove this, so I have to trust both their expertise. As it happens, my inflammatory markers are elevated and my joints are visibly swollen. Prior to this, I had a good period of time where my disease was well controlled and due to this, I refused to allow them to increase any autoimmune disease specific medication.

I find it difficult to achieve the delicate balance between good disease control and functioning immune system. It seems that every time they increase my immunosuppressive (subcut methotrexate and subcut humira) drugs, I pick up an infection which means a) I end up missing doses while I recover and b) all my symptoms flare because they always do when I've got an infection.

From my time on forums and social media groups, it seems that most people are treated symptomatically. Obviously my doctors are the experts but I feel a bit like we are using a sledgehammer to crack a nut. While I am deeply affected by my symptoms, I am equally anxious about - what feels like - the doctors trying to batter my immune system. As mentioned above, it feels counterproductive due to the side effects. I'm curious as to how others manage their autonomic dysfunction symptoms. Any input would be much appreciated, thank you.

I am in a similar situation and have begun to accept that medication might improve my quality of life. I have high full body SFPN with dysautonomia. Due to my high speckled ANA, they suspect autoimmune process, but can't pin it down. One neurologist is confident that it is sjogrens and offered plaquenil. I haven't taken it, and still I leave it an open option, but I feel since I really have no concrete cause found, I keep waiting for new opinions. In the mean time I am trying out mestinon and midodrine which are commonly prescribed to manage some symptoms of dysautonomia from any cause.

First thing I would suggest is to have your IgG subclasses checked. 25% of people with autoimmune disease are also immune deficient. Since you get an infection every time you increase the immune suppression you might just have a weak immune system to begin with. Many doctors check the IgG level but they don't check the subclasses. MANY people (myself included) have a normal total IgG, but are deficient in 1, 2 or more of the 4 subclasses. This would explain why you have a hard time with your current treatment regimen.

You may find it helpful to treat the underlining cause...but sadly, it's not always effective for autonomic dysfunction. When autoimmune disease attacks the autonomic ganglia, it is often permanent. Therefore, symptomatic treatment is used. There are good treatments for gastroparesis, and orthostatic hypotension, along with POTS. The neurogenic bladder is a bit harder to treat, but hopefully they have some new treatments out there now.

I'm sorry to hear you are in a similar position. In some ways for me it is easier because the autoimmune disease came first.

I don't know how I would go about having IgG tested. Would it be an immunologist that I would need to see?

I do have this suspicious feeling that my symptoms are permanent, hence my nastiness in increasing the immunosuppressive drugs.

I was trailed on midodrine which was helpful but the NHS (well only in my area!) won't fund this due to cost and my cardiologist has concerns about me paying for it privately and not being monitored properly. That said, I am seeing cardio again to discuss.

I hear that there are good gastoparesis treatments but my experience has not been good. I've tried many treatments without success. I am awaiting another opinion but I am looking at a wait for around a year to be seen. :(

Your primary care doctor should be able to order the simple lab for IgG subclasses.

Midodrine is a good drug (I use it along with Florinef---another good option). I hope your new cardio can get it for you, or at least allow you to get it privately and help with monitoring.

Have you tried Domperidone for the gastroparesis?

I'm on the maximum dose of Domperidone. It's helpful in terms of I'm not vomiting without warning as often as I was but I am still having cycles of vomiting and pain. I'm going to trial metaclopramide next hopefully.

What changes about the treatment or disease management if someone has IGG deficiency?

The only change would be to properly address the immune deficiency...with IVIG. Then you might have more success with the Methotrexate and Humira. It would help stop the infections, so you can continue treatment cycles better.

There is a new option you may want to consider for the gastroparesis...Mestinon. it is used for Myasthenia Gravis, but it has been found to help autonomic dysfunction....including GI motility issues. The Mayo Clinic discusses it on the website for increasing BP in those with autonomic neuroapthy, but it can also help GI issues. Worth talking to your doctor about it as an option. You can google Mestinon for gastroparesis and get numerous articles to read.

I tried it, but had a bad side-effect...caused me to have asthma attack after each dose.

Hope this helps.