MAT - Wow, that is probably the most helpful thing I've heard yet during my months and months of trying to figure out what is happening to me. I am so sorry that I hijacked your thread here, that was not my intent, I am just so desperate to figure things out. My primary doctor, neurologist, and rheumatologist COMBINED have not been as helpful as your response once.

I truly hope you don't mind me going into a bit more detail about my situation. You're the first person I've seen here with a RA diagnosis, granted seronegative, but you still have shed so much light on this for me. I can't thank you enough.

I am seropositive RA - rheumatoid factor high, anti-ccp positive. Negative ANA, negative everything else. And I mean everything, not a single positive IgA, IgG, nothing. Vasculitis negative, ALL extractable nuclear antigen antibody tests negative, including the ones for sjorgens, etc. The only thing I have tying me to my RA diagnosis is the RF and the Anti-CCP, which are both good indicators of RA, oh and right, my horrible migrating joint pain that I've had for 3 years now.

That all said, the only other health issues I have are that I was extremely anemic for a long time (iron deficient) and I have high blood pressure - both have improved with medication and supplementation. I am also overweight, but am now down 100 pounds. The neuropathy is an absolute mystery to me AND to all of my doctors. My rheumy said she doesn't see peripheral neuropathy with RA patients. That really confused me. I'm not diabetic, but I am borderline PRE diabetic. I did take a PPI for heartburn for 3 straight years (not on it anymore since changing my diet) I can't help but wonder if my PN is stemming from poor nutrition and lack of absorbing nutrients for so long? Maybe a gluten sensitivity (tested negative for celiac)

Anyway, did NOT mean to hijack this thread from you, you're just so knowledgable and you really helped me to understand. I could not get a straight answer on how PN and RA were connected and now I'm not entirely sure they are. I wouldn't be super surprised to see a positive ANA someday, I just didn't know neuropathy would proceed that and be the first thing to go south. It's annoying to not know what is causing it because I'm just getting worse and I feel like I can't do anything about it.

Thank you again for your insight. Means a lot.

Yes thanks very much glenntaj - so helpful to learn more - have saved the two links for future reference.

I'm delighted to have been of assistance although I'm no medic - but just a very interested person with previously unaccounted symptoms and a geekish disposition! Your RA sounds positively primary ie your main disease. So what medications are you taking for it? Have you researched whether these could cause peripheral neuropathy as a side effect? I took Sulfasalazine, methotrexate, Hydroxichloraquine and Imuran - only methotrexate did not hospitalise me with allergic reactions. All potentially can cause parasthesia - especially Hydroxichloraquine.

If you aren't on any medications that could be responsible then perhaps the active RA is paving the way for Osteoarthritis, which in turn is causing damage to your joints and affecting your nerves? I would try to see a neurologist if I were in your shoes and have investigations such as nerve conduction, brain, neck and lumbar, MRI etc. You can have RA with another non rheumatic disease of course, such as Hypothyrodism, cancer, MS, Diabetes, Parkinson's etc. But an endo told me that PN would be in longstanding diabetes only. If your RA is active and seropositive then perhaps it is causing your PN. I don't see how this could be ruled out if you still have high amounts of inflammation. There is a connective tissue involvement for many with RA after all. You will get there in the end as I have - a few years ahead of you with my symptoms and diagnosis. Nothing is black and white in rheumatology!

Thank you so much for your response - yet again. I am taking methotrexate for the RA. I've only been on it for a little over a month. I just got my RA diagnosis July 1, 2016. I actually went to the doctor in May for my PN, which I have been dealing with since January of this year. Then I mentioned my joint pain, which I always attributed to being overweight, and she ran blood tests. Then suddenly I'm at a rheumatologist with rheumatoid arthritis, not a single clue what it was, being sent home with some folder of information about it and a medication prescription for MTX. Still no clue why the PN, which is why I went to the doctor to begin with.

I am rather inflamed. But because I am overweight, it's hard for me to SEE how much. My hands hurt like absolute hell, even using the turn signal in the car is painful. I feel like every one of my finger joints are broken. My Rheumy prescribed me prednisone, haven't taken it yet, I am too scared. So, like I mentioned, I've had this joint pain for 3 years now. I kind of thought MAYBE it was something not great but I think I was too afraid to know. Then came the PN this year (long before I started taking any meds for RA) and when the PN got worse in May, so did the joint pain. So, I have to believe there is some correlation.

Thanks for the information, once again. I am so glad you got a diagnosis. I wish none of us had to deal with any of this, it really does not seem fair, but it must be nice to have an answer finally. I hope I will someday too.

OH I forgot to mention, the craziest thing, I've never ever had any joint pain or pain in my feet. Just woke up one day and had numb toes. So strange.

I also forgot to mention, I did have an MRI - nothing found there. I am having an EMG on Tuesday on my hand and foot. Not excited but I know it needs to be done. I will update elsewhere, maybe in a new thread since I have so rudely hijacked yours, what is discovered.

I can't tell you how much I relate to what you are experiencing. My seronegative RA was pretty much as you describe yours. I too was overweight, also grieving having lost both parents suddenly and prematurely. I was menopausal so assumed it was all hormones but it did seem strange to have both wrists, both sets of knuckles and both knees all excruciatingly painful. I thought it was a combination of my weight, hormones, grief and hypothyroidism with osteoarthritis.

My Rheumatoid Factor was a low positive and rose over 2011. My inflammatory markers were soaring. But the small fibre neuropathy had started the year before and then these and Raynauds (which I'd never previously suffered from) would flare in tandem. Like you I couldn't drive - couldn't turn the key in the ignition even - wrists felt fractured and I lived in splints. Then I was given a steroid injection and my symptoms clean disappeared for a few months. Since then I've had methotrexate and three others plus several long courses of Prednisolone - which masks things brilliantly but made me eat more. I can't take NSAIDs anymore.

It's only now that I look back on my pre-RA days and see a rather poorly woman with severe eczema, alopecia and rhinitis. I think I've had Sjogrens for decades. The RA was just a new manifestation of the same thing. In this sense it wasn't proper RA - it was synovial swelling caused by the Sjogrens.

I think three years is quite a long time to put off diagnosis for and still think your peripheral neuropathy may be an unusual complication of your RA. And you do at least have certainty with your diagnosis of RA - which is more than I ever did. Even my original rheumy said as he diagnosed me I should "keep an open mind - things could change". Methotrexate with Hydroxichloraquine knocked my Sjogrens RA into the long grass but it took about six months to a year. Hang in there - there are lots more medications a seropositive person like you can try. Take care. Mat x

[QUOTE=MAT52;1219627]I can't tell you how much I relate to what you are experiencing. My seronegative RA was pretty much as you describe yours. I too was overweight, also grieving having lost both parents suddenly and prematurely. I was menopausal so assumed it was all hormones but it did seem strange to have both wrists, both sets of knuckles and both knees all excruciatingly painful. I thought it was a combination of my weight, hormones, grief and hypothyroidism with osteoarthritis.

My Rheumatoid Factor was a low positive and rose over 2011. My inflammatory markers were soaring. But the small fibre neuropathy had started the year before and then these and Raynauds (which I'd never previously suffered from) would flare in tandem. Like you I couldn't drive - couldn't turn the key in the ignition even - wrists felt fractured and I lived in splints. Then I was given a steroid injection and my symptoms clean disappeared for a few months. Since then I've had methotrexate and three others plus several long courses of Prednisolone - which masks things brilliantly but made me eat more. I can't take NSAIDs anymore.

It's only now that I look back on my pre-RA days and see a rather poorly woman with severe eczema, alopecia and rhinitis. I think I've had Sjogrens for decades. The RA was just a new manifestation of the same thing. In this sense it wasn't proper RA - it was synovial swelling caused by the Sjogrens.

I think three years is quite a long time to put off diagnosis for and still think your peripheral neuropathy may be an unusual complication of your RA. And you do at least have certainty with your diagnosis of RA - which is more than I ever did. Even my original rheumy said as he diagnosed me I should "keep an open mind - things could change". Methotrexate with Hydroxichloraquine knocked my Sjogrens RA into the long grass but it took about six months to a year. Hang in there - there are lots more medications a seropositive person like you can try. Take care. Mat x[/QUOTE

Please don't worry about hijacking my post - you aren't really. I haven't come across anyone else dealing with this type of problem either. I don't know how severe or widespread your neuropathy is but mine affects my entire body including my face. It didn't show up in nerve conduction tests or brain MRI but it did show up in my CSF taken with a lumbar puncture early last year. The paired oligloclonal bands they found indicate various systemic processes including primary Sjogren's - but not RA. My presentation of Sjogren's is very like MS.

This is why I'm so relieved to have a new diagnosis that I can relate so much better and which probably explains my non length dependent SFN at last. My new rheumy said that SFN is not associated with seronegative RA. He did not mention seropositive RA in connection with neuropathy because I don't have this presentation. This and my clear positive ANA and immunoglobulins A and G led him to request the lip biopsy which vindicated my research journey and all the invasive tests I've had. I also have strong signs of autonomic neuropathy with nasty GI/ swallowing problems.

Anyway I wonder if this link I just found may be of interest to you:
Medscape: Medscape Access

Mskari85, for a long time RA and OA have been thought of as separate conditions - the immune system is involved in RA but not in OA.

However, this is a bit simplistic - immune system proteins, notably some of the complement proteins, seem to be involved in the inflammatory response in OA - see Identification of a central role for complement in osteoarthritis.

I don't know if this has led to improved therapy but it is something that you could discuss with your rheumatologist.

Sorry to be late in reply. I'm so glad you finally have answers...and to be honest, I'm not surprised at the answers you received. Being that I have primary Sjogren's and ganglionopathy, I could see some of your history matching mine. I too am sero-negative for Sjogren's, but very positive via lip biopsy. Actually, my lip biopsy report says that there was so much loss of acinar structures and the degree of fibrosis was significant, that they considered it consistent with Sjogren's at end stage.

I hope they still follow up with checking for Scerloderma based on your ANA nucleolar pattern. As I told you before, it is possible to have overlap of autoimmune disease processes...and the member from Sjogren's World had both along with profound neuropathy.

There are actually many people with Sjogren's that don't have overly dry mouth. My mouth isn't that dry any more. I have times when it is more dry, and times when it isn't that bad. You should see a dentist though, as dental problems are common with Sjogren's and even slight bacterial changes in the mouth (from less saliva) can cause gum disease, cavities, etc.

Your new GI symptoms (constipation, etc) may be explained by some autonomic neuropathy...also very common with Sjogren's and ganglionopathy/neuronopathy.

I know you have tried various DMARDS, like Plaquenil without success and having many side-effects. I hope they consider IVIG for your symptoms and neuropathy...you would definitely be a good candidate. I have found IVIG to help Sjogren's symptoms and some of my neuropathy symptoms. However my neuropathy and Sjogren's was confirmed too late and therefore there was too much permanent damage for significant improvement with biologics and IVIG. But I do have less pain and I think it's has helped with slowing further progression. My autonomic symptoms also seem to be better managed, which I attribute to IVIG. With your new Sjogren's Dx and history of confirmed SFN, you should not have a problem being approved for IVIG...even in your location.

Please keep us posted.

Thanks Enbloc. Yes whenever you've described your neuro experiences I feel I'm somewhere behind you with very similar symptoms. Very helpful to know that your mouth isn't usually severely dry. Like you mine goes in stages. I know my teeth are weak and I have had many fillings and have had plenty of root canal treatments and crowns.

However, some years ago I took my sons to a dentist. He looked at youngest son's teeth and said that, unlike the other two, he obviously slept with his mouth open. He explained that this has a pretty devastating impact on oral hygiene as the saliva doesn't flow overnight, leaving bacteria to do their thing unimpeded.

Ever since then I've woken, as I always do because of bladder calls and pain, and found myself clenching my mouth shut for dear life! I now have to wear a mouth guard because bruxism has made its mark, but I'm convinced that keeping my lips closed at night is one of the reasons my teeth are much improved from how they were in my younger days. I do get a very blocked, dry nose - periodically full of ulcers that trigger nose bleeds. And have had a bothersome dry cough for years. Also I'm getting these severe palpitations after eating now which I think are vagus nerve related to the act of swallowing/ chewing. So it seems to me that this must be where my Sjogren's lands. But I also think I've had it for decades and that the RA symptoms were just a manifestation of it. The neuro symptoms started well before the polyarthritis and synovial swelling.

I don't think I do have Scleroderma - or maybe a mild version (ie CREST) because I really don't have the external skin hardening apart from on my toes and one elbow- and no ulceration or calcium deposits, only mild Raynaud's and circulation madness caused by the SFN. If a nail fold capillary test is ever done then I think they will only see telangliectasias at the tops like red halos with the odd splinter haemorrhage - none in the nail folds themselves, a very reliable indicator of Scleroderma I'm told. My nails are more PsA/ Lupus-like.

Interesting about constipation. I'm convinced it is autonomic because it isn't stress related and I have no abdominal discomfort. It's as if my brain has forgotten to signal to my bowels to work - so, like a broken lift, the doors don't open often and the lift shaft is now not functioning properly either despite all the Laxido! It reminds me of a friend with MS's description of hers.