Burning Soles and test results help please

[MAT51]

Hi - not been here for a while. I see a Professor of rheumatology who specialises in immunology and CT diseases a week tomorrow for a second opinion followed a week later by an dermatologist who specialises in immunology so I'm trying to work what to proritise talking about with these two specialists. I have a diagnosis of RA that I'm querying now because joint pain has more or less faded into the very distant background compared to peripheral neuropathy, dry eyes and nose (sores and nose bleeds) with a feeling that the skin on my face and neck is all drying out to the point where I feel as though I'm made of blotting paper. The oiliest creams just seem to soak up in minutes and my eye drops are great but I'm using them constantly just now and feeling very tired all the time. The hives that I was referred to the dermatologist for have taken a hike apart from the odd itchy spot now that I'm back on 10mg of injectable Methotrexate. Also the intense peripheral neuropathy has been lessened a lot by the introduction of a low dose of slow release Nifedipine into my drug regime. But my soles still burn every night. I know that Sjogren's causes drying out of mucous producing glands but I don't understand how it causes this neuropathy at all?

I really do believe that I probably have Sjogren's rather than RA because of the sense of drying out - although perhaps it is secondary Sjogrens so that the RA might be in remission but the rest is still active perhaps?  but what I can't get to grips with is how my rheumatologist is so dismissive of the idea that you can still have Sjogren's with negative immunology despite diagnosing me in 2011 with sero-negative RA. So I thought perhaps people here could take a look at my test results for autoantibodies and tell me what they mean? I realise they are broadly negative from my rheumatologist and my GP's responses but are these likely to change and do they make it more likely that my Sjogren's is secondary or primary please?

Also my ESR has gone up from 17 where it was when I was taking Hydroxichloraquine (came off because it made my skin painful and swollen around my face) to 44. I can always predict my ESR by how stiff and achy I'm feeling. Would this be the same with primary SS?

Anti-nuclear ab (immunoassay) = Equivocal
Anti ds DNA  =  <0.1
ENA = Negative

ENA antibody profile and Anti nuclear ab (immunoassay) includes: Ro, La, Sm, UIRNP (RNP70,
Scl-70, Jo-1, centromere B and dsDNA (IgG)

Anti ds DNA ref range (NOTE RANGE CHANGE)
Negative: <10 IU/ml
Equivocal: - 10-15 IU/Ml
Positive: >15 IU/ml

[Carolina]

Neurologic complications
A PRIMER ON THE NEUROLOGICAL
COMPLICATIONS OF SJÖGREN'S
By Julius Birnbaum, MD
Johns Hopkins Neurology-Rheumatology Clinic

http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

Try this.

Hugs,  Elaine

[anita]

It is certainly possible (and probable) that you have Sjogren's, either with RA or that the main problem is Sjogren's.  Joint pain can come with either.  I don't see a lab for RF (rheumatoid factor) which is to determine RA...nor do I see SSA or SSB for Sjogren's.  So, as far as I can tell, it could be either.

The peripheral neuropathy (PN) can come from Sjogren's.  It is quite common with Sjogren's, as a matter of fact.  The burning, is the most common symptom of small fiber neuropathy (as form of PN).  The neurolologist will likely send you for EMG and NCS studies (because that's how they usually start their testing to rule out large fiber neuropathy) BUT these will NOT show small fiber neuropathy.  You must have a skin biopsy to confirm SFN.

So you have some testing ahead of you to figure out the RA, Sjogren's, and then the neuropathy.  At your appointment with your rheumy next week, I would inquire about other labs, and a consult with a neurologist for the PN.  The only self help remedy I can offer for the burning until you get a diagnosis and treatment started (and IVIG is used for this in some cases) is a product called Biofreeze.  It's over the counter (OTC) in Walmart or any drug store...or online.  It can help a little for some people with the burning.

Hope you stay in touch and let us know how these appointments go and whether they figure everything out for you.

[MAT51]

Thank-you both very much. I didn't realise that these blood tests didn't include more specific ones for Sjogren's. My RF was taken in 2011 and 2012 and was around 26 - so a low positive. Then it was 15 in August. The lab wouldn't re-test this time as they said only once a year on the NHS. Maybe this is why my results are equivocal?

I've not been referred to a neurologist yet. My rheumatologist said simply observing my neuro symptoms is the right thing for now.  I was dismayed by this and my GP suggested treating it as Raynauds with a vasodilator, Nifedipine, and that seems to have taken the more severe neuropathic pain in my legs and feet down to a manageable level while also reducing my slightly high blood pressure. Combined with the methotrexate everything has improved apart from very dry eyes, nose and face and lips and the awful fatigue. My ESR is still raised at 40 but it has come down a little from 44 since I restarted the Methotrexate four weeks ago.

But it doesn't feel right to take these two drugs without knowing what disease process they are actually supposed to be suppressing? So I pushed my rheumatologist to recommend someone for a second opinion and that's what I will hopefully be getting from the professor I see a week tomorrow!

[Linda196]

As Anita said, there doesn't seem to be any testing for RA, although the RF isn't the test I'd look for, since it's as indicative of Sjogren's as RA anyway, the definitive test for RA is anti-CCP. You did mention that you were diagnosed sero-negative RA, but it might be useful to have follow-up testing.

The Ro and La listed in your results are other names for anti-SSA and -SSB, and both are negative.

[MAT51]

Thanks Linda. I did think the Ro and La were the ones for SS. I was anti-CCP negative in 2011 and don't see why it would have changed as I don't have any RA symptoms currently apart From raised ESR, which is a very general test of inflammation I know. I do have strange things happening with my nails - Beau's lines on my toenails and pale clouding at the bottom of all my finger nails with a distinct pink ridge at the top of each. A friend who has Psoriatic Arthritis suggested I might have PsA without the Psoraisis - but as my joint pain is minimal presently I don't think this is so likely. The other possibility is some type of Vasculitis - and both Spondiloarthritis and Vasculitus are usually sero negative.

Whatever I have I'm definitely drying up just now like an old prune so I feel Sjogrens of some sort is a definite!

[quietdynamics]

Dryness.

DH has neuropathy due to diabetes.
So it was he who helped me with some information.

I was drying out so fast .. I thought I would turn into a 'cranrasin"... just everywhere.
Times the bottom of my feet felt as though they had been dragged along course concrete, raw. Dry heel crack open .. I was amazed.. I had never had anything like before. We glued it with some liquid product..

DH had a cream for generic foot cream for diabetics ( came from walmart), he suggested I try it and it really soften and soothed my feet. Think Gold Bond is one brand, this one was the generic. Helped so much I even used it one some spots on my forehead.. and it worked.

I tried buying, borrowing products.. they did not work. The collection of 'fail' products was growing $$$

So if you have seen my posts.. I turned to "Virgin Olive Oil".
I had it in the kitchen, just dab two finger tips in it and that is enough... in a few minutes is absorbs and leaves skin smooth with protected against UV rays ( who knew?.. but, it is true)  Capillaries receded, and it and it has anti-oxidants, anti-inflammation benefits. Look up the chemical components of Olive oil. Interesting. 

DH also had a Rx for Neurontin for neruopathy.. so I discussed that med with my Dr. and it has helped with pain management and quality of life for me.   

Eye drops I needed to change to one with higher viscosity. More soothing and lasts longer. Drops and gel at night.
OTC Drops: Telling the Tears Apart   http://www.revophth.com/content/i/2133/c/36940/

2 liters of water/day is important. Your urine should be close to clear.

[Jasper]

As Linda mentioned, you did have the negative Sjogren's antibodies in the ENA panel. However, those can change. Mine did.

I have had Sjogren's symptoms for decades, starting way back in the early 90s. However, everyone missed those symptoms (the doctors, I mean) and I was never diagnosed August 2013 (just last summer). My Rheumatologist agrees that I have had Sjogren's for decades, just never diagnosed until August 2013.

In January 2012, I had an ENA panel and the Sjogren's antibodies were negative. A year later, when I wanted more testing because I was sure I had an Autoimmune Disease, I was told I already had the ENA and it was negative so I did not need more testing.  Therefore, I sought out a Rheumatologist on my own and luckily I found a very competent Rheumatologist last July. She tested me in July 2013 and the SS-A had changed to positive. She said it was possible that they had just not turned positive until 2013. She also told me at that time that the various test results can change.  Therefore she runs several of the tests every 3 months. Incidentally, all of my other tests were negative/normal except for low Vit. D.

Basically, what I am saying, is that you very well could be negative for Sjogren's and still have it. I believe about 40-50% of people are negative even though they do have Sjogren's. You certainly have the bizarre array of symptoms many of us have. Plus, the dryness seems to be pretty prominent for you now.

I also have Peripheral Neuropathy and my Neurologist (who specializes in immune mediated neuropathies) says it is Sjogren's related neuropathy (small fiber neuropathy). Basically, Sjogren's attacks the small fibers of the nervous system (as opposed to the large fibers). That article Elain linked to is an excellent article.

My Rheumatologist always looks at my nails and nail beds. I have the red line at the base of each fingernail too. This is on the skin, not the nail, and it is just behind where the nail ends and the skin begins. My Rheumatoloist said it is from the Sjogren's and it has to do with the frail capillaries and capillary disorder. (Other AI Diseases can also cause nail bed capillary problems and she is always keeping her eyes out for any additional AI Diseases to present in me.) Here is an article that discusses the nail bed capillary problems.

http://rheumatology.oxfordjournals.org/content/45/suppl_4/iv43.full

For photos, I just googled nail bed capillary photos. Some of the photos look worse than mine are, but one can get an idea.

Mine are just red lines following the curve of the nail, but the redness in on the skin just at the base of the nail bed and proximal to the nail.

Another link:

http://rheumatology.oxfordjournals.org/content/38/9/826.full

And one final link to a shorter article, part of which I quoted:

"Conclusion:"
"The prevalence and severity of nailfold capillary changes in pts with PSS is significantly higher than that of nonautoimmune sicca pts and healthy controls. Capillary changes may occur in the presence or absence of RP (Reynaud's). These results suggest that diagnostic sensitivity of AECG classification criteria or other criteria sets for PSS could be further improved by addition of simple variable like nailfold capillaroscopy scores."

http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=781&id=95225


For the dry eyes, I need Restasis drops (over the counters are not strong enough).

[MAT51]

Thanks - you are very helpful. But I should say that my nail problems appear to be in the nail bed rather than capillaries. I looked this up recently and it is called Terry's Nails. It says this relates to Sclerosis of the liver or heart conditions but I'm fairly sure I have neither. My GP believes the Hydroxichloraquine caused this and it certainly made my face swell with hives. But this is odd because I was on it for a year previously with Methotrexate and never had these Terry's Nails then?!

I use Hylo Forte intensive lubrication with alacrity-lube at night. On my face I use Johnston's Baby Oil gel with Cammomile or diprobase ointment - both give good relief for a short time but I'm constantly going back for more and my lips are terribly dry - nothing works for longer than ten minutes just now but I have no flaking just a feeling of tightness as if my skin was withering away.

Fortunately for me my doctors do know I have an autoimmune problem despite lack of positive autoantibodies. The RA made itself fairly clear in the form of swelling for a few years and still affects my feet although it is non erosive so far. But no one has yet paid much heed to the neuropathy although they have taken blood and ruled out diabetes, B12, Ceoliacs and anaemia. This makes me feel as though the rheumy thinks I'm making it up. The fact that the nifedipine made a difference convinced me that I should pursue the wider connective tissue links and also look more closely into my nails. Again thanks I will ask the rheumy doc and dermatologist about nail capillaries.

[jazzlover]

See bartonella for "burning soles"

-

http://www.mybrainhealth.org/files/Lyme_check_list_06_01_12.pdf

[Tivia]

Im going through the red burning soles and palms now also. The weather hit 91 and i seemed to have gotten more inflamed. And my nasal passages and sinuses are inflamed and killing me. Not infected just swollen and dry. Doc gave me flonase? but im hesitant to try anything that sounds like it may dry me up more. My skin is parchment too lol. I do have nerve damage but its not clear to me whats causing this warm kinda inflamed feeling on my palms and soles. Any one use flonase with sjs, does it help with nasal inflamation without drying you up? Summer looks like a killer if the weather is already in the 90s here in missouri

[machenza]

Im going through the red burning soles and palms now also. The weather hit 91 and i seemed to have gotten more inflamed. And my nasal passages and sinuses are inflamed and killing me. Not infected just swollen and dry. Doc gave me flonase? but im hesitant to try anything that sounds like it may dry me up more. My skin is parchment too lol. I do have nerve damage but its not clear to me whats causing this warm kinda inflamed feeling on my palms and soles. Any one use flonase with sjs, does it help with nasal inflamation without drying you up? Summer looks like a killer if the weather is already in the 90s here in missouri

I use Flonase. It does not dry me much, but it makes a difference in the swallen tissues. I can breathe better with it.

Nellie

[irish]

Chances are you do have Sjogrens secondary to your RA plus if you read for any length of time on this forum you will find that many people here have many negative tests but still have the symptoms of Sjogrens and many other autoimmune diseases.

The main thing is that your doctor is treating the symptoms. Being on Methtrexate is probably helping and sometimes docs will put people on another drug such as Plaquenil to help with some of the issues. It does sound as though most of your symptoms are not inflammatory/pain/joints, etc. but related to the neuropathy. Have you been put on Lyrica or Gabapentin for this burning?

Autoimmune diseases have a lot of cross over symptoms and it is impossible to nail down certain symptoms for a specific disease---mainly because we all respond differently to the assault on our body. I know that early on -- many years ago, one of my first symptoms was burning on the sides and tops of my feet. It hurt just to place my feet on the sheets at night. This lasted for a time and then disappeared, but I am sure that it will show up again sometime.

There is a product called Blue Goo that I buy at Walmart. It is in the pharmacy department and in a flat metal container that is about 2+ inches in diameter and about1" high. This is made from papaya, bees wax and some other thing, maybe emu oil. When my feet get so dry and so I put this on and it is wonderful as it oils and relaxes the tissues. I doubt it will help the neuropathy pain, but it might ease some of the dryness/skin issues which may help. It is great on hands also. Good luck. Irish

[anita]

While you are trying to get appointments set and diagnosis made, it can't hurt to try various OTC products that may just help relieve  your symptoms.  And being able to report what brought your relief, can help with the diagnostics, sometimes,  The blue goo is good for dryness, but if you had the typical burning pain in the feet/soles or palms of hands, then Biofreeze is worth a try.  Same goes for soak in warm/tap (not hot, not cold) water with epsom salt...magnesium sulfate,  It is also available as a lotion at Wal-mart.  It works wonders for those suffering on the PN neuro forum I visit...  Its worth a try.

There is also lidoderm patches (rx though).  They are hit/miss for pain burning relief as they have to be placed at the right spot, which may not be the spot of the pain...it may be further up the nerve-root.  But there is HELP...just some trial and error, which we are all used to here!!

Hope you got a few things to consider and try,  Please post back and tell us how things are going.  Your experiences can help even more people.  Take care, Have a good night,

Anita

[MAT51]

Just woken up to Bank Holiday Monday here in the far north of Scotland. Had a rare lie in as the weather here is cold and grey and a little wet!

We don't have Walmart here I should say firstly. I do use a lovely baby oil gel on my face which is where all the dryness is - not sure that Blue Goo is appropriate for the face? It is presently in my scalp, face and neck but things change as Irish says. I should be used to this as I've always had ongoing health problems relating to my skin and allergies all my life. Just as I would think I'd nailed it to one cause the wretched symptom would disappear only to be replaced by another equally rubbish one!  The constants were eczema and bouts of alopecia. Now, with my early menopause, these disappeared (hooray!) only to be replaced a few years later by RA symptoms (less hooray )

I use Naseptin that my doctor prescriped for my nasal passages - not too often because it really is yiucky to put stuff up my nose but it works very efficiently when I do.

I suspect some trade names are different here in the UK - but I have a stupidly high pain threshold and sometimes, when I'm feeling particularly low and tired, I become aware of pain long after it's started and realise that the pain is exhausting me without me even cottoning on to it properly? This was how the peripheral neuropathy affected me so badly and why I was so upset when my rheumatologist dismissed it as being nothing rheumatic - but neurological. I know Sjogrens and Lupus can both cause neuro symptoms and I feel he should have tried a lot harder to help me with the pain I was in. Thankfully I have an excellent GP (primary) who decided to treat me for secondary Raynauds with Nifedipine.

The Methotrexate has already improved things I feel. Perhaps it works quicker having been in my system previously for 18 months?  But what I'm starting to realise is that I need quite a high dose to get the full benefit and I cannot tolerate it at a high dose at all. It gives me the most obnoxious taste and I lose my sense of smell and taste once on a high dose - plus there's nausea. Then there's Plaquenil (Hydroxichloraquine) which worked brilliantly on my joints up until a few months ago but my face was covered in hives and my lips and the rest kept swelling up after I'd taken the tablets.  I was heading for anaphylaxis so I had to stop. Sulfasalazine was even worse - ended up in hosptital with the itchiest, purple rash from head to toe and a swollen neck and ears!

What I have observed is that the low dose of injectable Methotrexate works for the first 4 days quite well and then, over the weekend (days 5&6) my symptoms return and I start getting itchy spots on my face (like insect bites) and my scalp, nose and eyes are dryer than ever and the burning soles return with a vengeance. I do not have the peripheral neuropathy as painfully now I'm on Nifedipine - which dilates the blood vessels - so I'm guessing that this is a circulation problem in part. I know I can't tolerate MTX at a higher dose and have tried and failed two other DMARDs. So I'm wondering what next in terms of immune suppression because - after 8 months off these drugs I find I do need really them, in fact a quite a high dosage, to make a difference. For 8 months I thought I could sort myself out through good diet and exercise and vitamins and minerals as my vitamin D levels were really low. All this lifestyle stuff helps a lot but after 8 months I was pretty unwell and my inflammation markers were very high so I ended up on oral steroids for a month just to get everything back under control.

Anyway thanks to everyone for advising. I will look out for the treatments you suggest.
Warm regards,
Mat51