Hi all,

I have posted before quite recently, I have a rhematic autoimmune disease called ankylosing spondylitis and now recently diagnosed with SFN following skin biopsy. Im seeing my rheum this Monday to discuss possible treatment options. He is keen on something called an anti TNF inhibitor,brand name humira (studies have linked this to causing demylinating neuropathies and in some instances SFN. It is however effective in many cases of ankylosing spondylitis - my primary original disease).

What I wanted to ask was- is it worth exploring whether the SFN is due to ganglion root damage? Might this help guide treatment or help further with diagnosis? I have read threads about specific MRI tests for that. I just wonder if it will get me any further along the road in trying some treatment or understanding the cause and therfore understanding treatment options.
My SFN symptoms are quite random which makes me think this may be the issue. The burning started in the top of my back, then mainly in the skin of my buttocks and then down the front of my thighs, knees ,lips and tongue, so in a non length dependant fashion. My feet hurt and go cold but that came later down the line.

If the ganglion root is the focus of damage am I right in thinking chances of recovery just go down the pan and regeneration of the root or nerve fibres isnt possible? :-(

On another note, I feel pretty worried about my skin. Before the awful burning started I noticed my skin changed overnight almost all over. It went white, really thin and like tissue paper, especially my legs where SFN is worst and hands and feet- this is still the case but worse. I worry that the skin on my legs will just split open and start ulcerating all over at some point down the line. I know it sounds dramatic but I do feel like that could happen in the near future. Do others have skin changes? Is it ultimately my destiny to have ulcers all over my legs if the SFN continues to point of total degredation? I already have significant loss of density according to my biopsy and the awful pain only started in October.
Thanks everyone for reading.

Yes, my skin in my arms and legs became whiter, quite shiny and thinner within a few days of the painful symptoms. It was very disconcerting at first. When I mentioned it to the doctors, they each said that my skin looked good for my age (accustomed to seeing unhealthy sick patient's skin).

Mind you, before the SFN, I had skin that looked exceptionally great (actually was quite vain about this prior due to lifetime compliments). Now as I don't shave or even focus on any of that anymore due to the allodynia, I just want the pain to stop. It has not changed much in the last eight months, but I can tell you it changed dramatically late last summer.

I hope this helps and you get some answers from your treatments.

I just came across your post but it;s been a very long day after my IVIG infusion. So , I'm hoping you won't if I mind wait to reply tomorrow, to discuss the new MRI to look at the dorsal root ganglia...I had one done several years ago. I'm just very tired tonight and spending more time correcting spelling errors, then making a point. So I'll write more in tomorrow...sorry for the delay.

Humira has been around a while, the way it works, its artifical antibody, against tnf(Tumor necrosis factor), which is a potent stimulator of inflammation, hence the target. Its considered an immune suppresive therapy(not steroids), iTS ALSo known to result in cancers like lymphomas in long term use(because the immune suppression prevents your immune system from fighting off infections/tumors), the most serious complication of humira. you are also more vulnerable to infections as well.

Thanks Baba. I thought this must be something others have experienced with SFN. I laughed at your comment ref shaving - I too have had to let all that go now and just focus on pain mnagement and trying to feel comfortable. My rheum says they look relatively normal, and they do compared to the worse cases he must see.

Thanks for replying en bloc, especially after a long day infusing.

Neuro, thanks for reply ref humira. I have read that there are lots of risks like you say. I am more concerned about impact upon neuropathy and any worsening of that. I am at a point where i am willing to try something and accept risks. Its just a case of choosing the right one. I am keen to learn the source of what i am certain is immune mediated SFN in order to know which treatment - like everyone else here I am sure

Hi JoannaP79

There is evidence that Humira (and the other TNF-blocking monoclonal antibodies) can lead to neuropathy and spinal demyelination.

You might find the information here helpful; http://onlinelibrary.wiley.com/doi/1...apt.12385/full .

Sorry Joanna for the delay.

I thought maybe I have some information that may be helpful to you. I have an autoimmune condition called Sjogren's, which has also attacked and caused damage to the dorsal root ganglia, evidenced by special MRI/MRN done at Johns Hopkins. This scan is done with a special protocol (called DRG protocol, for dorsal root ganglia) to look specifically at the dorsal root ganglia. It was still considered experimental when I had this done in 2011, but in my case they could definitively see enlargement and increased signal (bilaterally) of the dorsal root ganglia, which is consistent with ganglionitis.

Although this test may have given us confirmation of what we suspected in regards to the cause of my PN, it didn't proved us with any useful treatment options...since the damage consistent from Sjogren's is typically only treatable if caught with the first year of onset...and sometimes, not even that long, according to my neurologist/rheumatologist (he is BOTH specialties that focuses on the neurological complications of rheumatic disease---only one in the country to be both specialties).

So, yes, for me it was worth 'exploring' the SFN/PN damage back to the ganglia (just because I wanted the confirmation), but it doesn't always mean that it will open the door for options of treatment. That being said, I don't know whether it would make a difference for a patient with AS vs Sjogren's. But all depending on where you live and your ability to travel to Hopkins, it might be worth while for you to consider contacting the neurologist dept and see if this test is available for this purpose (mine was done in early 2011, so it may be more widely used).

Damage at the dorsal root doesn't usually have very optimistic recovery options, but it can't hurt to discuss this with a neurologist that would know more about the link with AS and SFN.

As for Humira, I have heard the same as others here mentioned about its link to neuropathy. I have just recently been Dx with what they know is an inflammatory arthritis (they believe is psoriatic arthritis), and of course the treatment that would be considered, is Humira. I'm not sure i'm interested in possibly increasing my neuropathy problems with this medication...not to mention I am immune deficient and this is an immune suppressor (so I may not even be considered to receive this).

Just thought you might want to know that exploration ganglion damage is possible, but it might not give you any useful or positive outcomes in regards to treatments. but Johns Hopkins is place to go if you are interested in pursuing it.

Hope this is helpful.

Thank you en bloc, this is very helpful. I hope you dont mind but have sent you a message.

Yes, my skin changed as well.

It hasn't thinned to the point that I fear rupture, but I can now see a roadmap of veins on the tops of my feet and the palms of my hands-all the way up to my fingertips. It is kinda creepy looking.

I can also see the tiny veins all around my eyes on my eyelids.

I do hope it stops eventually-my hubby and I joke about me being invisible someday skin-wise haha.

For now, I try to really take care of my skin. Lots of lotioning, lots of water.

Luckily I haven't heard of anyone having skin that ruptures and splits due to neuropathy alone-so god willing it stops at some point.

Also-if you take steroids at all for your AS-they also thin the skin. I take steroids everyday in really small doses for autoimmune Addison's Disease, so it really shouldn't thin my skin, as it is just replacing cortisol that my body doesn't make anymore-but I'm sure it doesn't help, either.

Aging will also cause skin changes. I am 35, and I noticed my body has changed in other ways in the past year or so. My cycle is still regular-but it has changed its behavior and presentation if that makes any sense haha, and age and hormones really affect skin. I think I read that mid thirties is about when a woman's cycle starts to change a bit-heading to the big finally. It isn't full blown perimenopause or anything-but something to think about.