Hello, I seem to remember posts on here where people have mentioned seeing Dr. Birnbaum for SJS with neuropathy, but can't remember if they mentioned what treatment he recommended for them. Just wondering if they learned anything from Dr. Birnbaum that might be helpful to others on this site that will never, ever get a chance to see this doctor. Maybe if we can get some ideas we can ask our doctors for the same kind of treatment. If we can educate the other doctors of the world about what Dr. Birnbaum has figured out...imagine all the people that could finally be helped. I know that for myself, I will never get to see Dr. Birnbaum because I barely have health insurance and they will never pay for any treatment in Baltimore. Saving enough money to go there is out of the question for me when having enough money to make ends meet is always a daily struggle in itself. I wish I could find a golden ticket that would get me treated by Dr. Birnbaum so that I could live again. Take Care......Mary
I would not overestimate what Birnbaum can do. I saw him and he advised to keep doing what my neuro was already doing. In no way, was my visit there, and I travelled 1200 miles, life changing. Maybe it was because I already get IVIG, maybe it is my 'stage' of disease or complications, but, it was pretty much another neuro visit for me.
Thanks for your reply Inga :) Does the IVIG make you feel better like less pain and burning? I am on plaquenil and I am handling it well. It has helped with giving more energy and has taken away some of the aches, but I am thinking I need to add methotrexate or prednisone to see if it will help my neuropathy? You and I have things in common with symptoms and I respect your opinion. If you learn ANYTHING else that helps you at all could you please, please share the information. I am having a couple bad days where I can barely walk on my feet and I am willing to hear any ideas as to what can help. I promise that if I learn anything along the way I will let everyone know, no matter how minor it may seem, every little bit of info is helpful. :) Thanks, Mary
Saw my neuro today also,,, no more in the way of treatment,,, while driving home got a call from Mayo,, the biopsy I had done over a year ago which showed SFN,, ALSO showed Long nerve deteriotion, so much for Pittsburgh cutting edge technoloigy,, now I have to call neuro tomorrow to see what they want to do,, neuro from Mayo asked what are they doing now,, I told her not a thing,, she advised me to come back up there soon,,
Plaquenil does not treat neuropathy, neither does methotrexate. These drugs are used more for mild to moderate autoimmune symptoms.
IVIG, rituxan and steroids are used to try to stop serious neuropathy....or to slow it, more accurately. How well any of these really work is still debatable. All 3 of these have major risk. IVIG is a blood product and some people have transfusion reactions. There have been recalls on the product due to disease at times. Rituxan carries the risk of PML, albeit it rare, of fatal brain infection. Prednisone can cause a lot of problems including severe osteoporosis and myopathy, so the benefit must outweigh the risk. The cost of one month of IVIG is $6000-8000. The cost of Rituxan $20000.
There is no effective treatment to cure neuropathy. There are medications to take the edge off. SSRIs such as Cymbalta work for some. Drugs like Lyrica, or Neurontin work for others. Some get some help from beta blockers, or from antiseizure meds like Topomax. Others need to use opiates. None of them works completely.
It takes a while to figure out what works the best for you. I would work with your neurologist and primary.
As it heats up outside,, I am finding this out,, I cook outside and freeze inside,, no happy medium,,, its going to be along slow painfull life,,,
Mary,
Dr. Birnbaum has been my doctor for several years. He's great a putting the pieces together (as in my case) where others lack, but he is no magician. He can only offer the same treatments available everywhere else. Like inga said, Plaquenil is good for autoimmune, but does nothing for neuropathy. Actually, I have found that there is not much that does help neuropathy, but I haven't tried Rituxan yet (don't think I will). Neuropathy is the hardest to treat, I think. IVIG was a good stabilizer of neuro symptoms, until the aseptic meningitis, so no more. I have also done high dose IV steroids here & there in an attempt to settle down the neuropathy and other symptoms during a bad flare....somewhat effective. I also used Cellcept for a short time, but a massive hematoma got infected and curtailed my treatment. Dr. Birnbaum uses these types of intervention only when absolutely necessary, and only when problems/diagnosis are well documented. He is actually very cautious about treatments.
I personally think he's great. I had been to Mayo and Dallas and only got a list of this and that wrong, but no one could find the one thing causing it all...until Birnbaum. Not to mention that now he is doing extensive research to find better ways to diagnose and document treatments, which is so important for those coming along behind us. Many people don't know this, but you don't have to drive/fly to Baltimore to see him. The Sjogrne's Center at Hopkins (including Birnbaum) will participate in what they call Remote Consultation. It has to be done through your doctor not you (because legally he cannot talk/treat you until a doctor/patient relationship is established), but it's basically a consult over the phone or video. Records are sent and he evaluates them, then consults with your doctor for treatment options, etc. The following link has the information about the Center. Contact the office (Caitlin) about the remote consultation if you're interested. She can get you started.
Good luck.
Anita
Sorry Mary, just noticed that the link wasn't there...Brain fog at it's finest...LOL
http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html
Hi,
Dr. Birnbaum is my doctor and I am really happy with the what he has done for me so far. My other doctors didn't know anything about getting a skin biopsy for small fiber neruopathy and he's the one that ordered that test and that's what finally showed the reason for the constant burning ache that I feel. He was also diagnosed me with Sjogren's even though I don't have dry mouth or dry eye, only PN, vaginal dryness and small joint pain. He really knows this disease.
Now as I am feeling this burning ache more pronounced in my arms, on my scalp, across my back and in my legs he wants to do a specialized MRI that he says has just been developed in the last 6 months. This would show any damage to the dorsal nerve ganglion and he wants me to have a spinal tap as well. I still have lots of questions about this and will ask him at my next apt. this month.
He mentioned steroid shots to relieve the nerve pain, but I really want to ask more about that as well.
Reading what Inga and Anita have written I think my neuropathy is nowhere near what they are experiencing. I was told though that since mine continues to progress it could eventually affect muscle weakness and coordination if I just continue to take meds without any other treatment. Right now I'm on Neurontin and I only get minimal relief. I'm not big on taking pills anyway and take as little as possible.
I'm always trying to keep this all in perspective by thinking how much this is this really bothering me and how far am I willing to go with treatment. I don't want to do something that will make me feel worse, because right now the neuropathy is only mildly effecting my daily life. It's annoying and painful at times, but that's about it. I do get tired if I walk for long distances though, and I notice it more when I'm under stress.
I'm eager to hear other people's thoughts on all this.
I was very fortunate in that I had a neuro who put things together very fast. He wanted me to see a rheum and there wasn't one he could recommend in our area. Birnbaum really had nothing else to offer me, other than to look at my stuff and maybe take blood and look to see if there was something else other than SjS going on, and that I did not get. It's fine really, since, as Anita said, and I said before....neuropathy is notoriously hard to treat. I already had the skin biopsy, muscle biopsy, lip biopsy, autonomic battery etc. There was really not much for him to run. I was hoping he would look farther than Sjogrens. He did not. My SSA and B are negative, and we hoped he would look for something else that could be causing the highly +ANA. He was very rushed the day I saw him and I was one of the later appointments, and I should have had the sense not to take an afternoon appointment, which is my rule....never take one. Wait a week or more longer, but don't take afternoons.
I am by no means doing a jig on IVIG, nor do I hold out hope that any other thing would allow me that pleasure. We are tending to think my decline is somewhat decelerated from where it would be, had I not been anything, which in my condition could be life-saving. Navydad puts it less delicately but more succinctly....it is slow, long and painful and I won't belabor the point. (I would only wish this on my worst enemies....the very worst ones.)
I am with Anita on the Rituxan. I would try Cellcept at a very low dose in addition to IVIG....for now.....I am staying the course with the IVIG until my kidneys start to buck more than they are, which is likely coming in the near future. I forgot to mention that IVIG is very hard on kidneys, in addition to the aseptic meningitis, which is a bear as well. I have also landed in the ER with skull splitting headaches, vomitting until I was inside out. IVIG has been known to induce myocardial infarction, kidney failure and any number of issues.
In general tho, I have had only intermittent problems with IVIG, so far.
I am not sure if they will prescribe any of these big guns for burning. My experience is that people need substantial autonomic issues or mobility issues and they need to substantiate them. Docs have to really go to bat for you. Then there is the insurance maze, which gets real interesting when on IVIG. Always something.
Thanks for the replies so far from all of you!! I really don't know what I would do without all of you on this forum. I feel so much better now because I am really seeing what I have control over and what I don't...something I need to accept. :( I really don't know what is going to happen, but I do know that I will NOT take the big gun treatments. I will take short term steroids and Neurotin or something of the like, but that is it. Other than that I am going to have to deal with the pain the best that I can. I am going to continue with the Plaquenil just in case something autoimmune is causing my neuropathy plus it does help some of the pain along with helping with fatigue and brain fog. i am not having any bad side effects from it so far.
I am also looking into some kind of detox of my body just in case I have something toxic making my neuropathy. As soon as I can afford it, I am going to start taking Acetyl L carnitine and alpha lipoic acid just in case it can help with nerve pain and regeneration..can't hurt. I have also been trying to exercise the best that I can so that my muscles don't atrophy and weaken even more. I read somewhere that if you exercise that maybe you can gain some control back of the nerve impulses to the muscles and counteract against the misfires.
I guess I will have to continue being my own doctor until I can find something that can help me. Like all of you, I don't want to feel GREAT..I just want to feel normal like the people I see everday walking around...like I used to feel. I want to live a day where this illness is not lurking in the back of my mind putting a damper on everything. I have a degree in elementary education and am no longer able to teach. I am now in retail where I find it hard to work 15 hours a week...sooo sad for me because I feel like a loser. If I find something that works I will pass it along because that is what the teacher in me likes to do ;) Take care......Mary
Mary,
I'm in elementary education, too. I teach 1st grade...it wears me out!!!
This topic was loaded with great information. Thanks
I strongly suggest that if you have biopsy proven small fiber neuropathy, that you get an autonomic battery done. You won't notice the changes occurring with autonomic neuropathy until it is late in the game. I would consider IVIG, if that was an option, if you have autonomic changes starting.
What would the autonomic changes be? Is that progressing neuropathy or something more?
Inga, yes I am planning on asking Rheumy about the neuropathy at my next appointment with him. I mentioned it at my first appointment and he said maybe we should do an EMG and I jumped in and said well that won't show small fiber neuropathy will it ? And he said well...no....LMAO thanks because I learned that from you Inga. So funny because he changed the subject when I mentioned skin biopsy and said well first things first. Doctors are so shocked when we actually know what we are talking about and give them a run for their money. I do plan on asking though at my next appointment for a EMG and or a skin biopsy along with an MRI of the brain and cervical spine to check to see if anyhting there is causing this mess. He will probably have to refer me to a neuro doc for things he can't order himself. So I am taking the necessary steps thanks to you and others on this site.......thank you all very much!!! Mary
Mom16,
Yes, progressing neuropathy can lead to autonomic changes. Autonomic neuropathy consists of misfiring signals to control BP, heart rate, temperature, balance, GI motility, vascular spasticity (livedo reticularis and arterial spasms) and even make it difficult to start urinating. It can reeks havoc and cam be very debilitating. Mine is very severe at this point with problems in every area mentioned. I had to have a pacemaker implanted and now have worsening cardiac function limiting me in every way. Inga is right, don't wait to be tested for autonomic neuropathy if you have small fiber or peripheral neuropathy. Getting control early in the game might make a big difference.
Anita put it pretty plainly. I posted about autonomic neuropathy and also posted a link to a site explaining all that the autonomic system governs.
My heart too has now started to cause issues. I am bradycardic and then convert to supraventricular tach, which is scary. They gave me a beta blocker which isn't doing much right now, but, given my BP drops out, it is hard to know what to do. I have had hypotension, now hypertension off and on. I gray out and get dizzy. I have gastroparesis, constipation(severe), diffuse esophageal spasm, severe spasm caused nutcracker esophagus, migraines, severe sicca, total loss of sensation of temperature resulting in total anhidrosis to heat, (IVIG has resolved this somewhat). I can't eat normally. I get early saiety, nausea, and even feel like passing out after a meal. At times I can't swallow effectively, and things urp back up, very gently....if I bend over....stuff will just gently go in reverse mode. My circadian rhythm is non-existent. Then there is pain, numbness, tingling, inability to feel foot plants, feeling like walking on a mattress, like being on a boat, like being seasick.
You may not notice Autonomic changes creeping up. You just start to feel unwell. It isn't real specific. You may notice the things Anita mentions then again, perhaps not. As she said, it become extremely difficult to control the AUTOMATIC functions of your body, which most people do not appreciate until they are gone.
Also, for skin biopsy, one needs a NEUROLOGIST, not a rheumatologist. A rheumie won't do the neuro things. A neuro will be able to get you to the proper place for the skin biopsy, which will need to be a research center. A neuro will get you an autonomic battery as well....which needs to be done at a place with an autonomic center and those are somewhat limited depending on your location. EMGs will not show small fiber neuropathy. An autonomic battery likely will, because I would venture a guess that most of us with SFN have some degree of dysautonomia.
I had the autonomic battery first and flunked so much they sent me for the skin biopsy. After they determined I had small fiber, they then did a lot of other tests to find a cause and nothing came up, so they went with the lip biopsy I had done many years before. Later, I went to a positive ANA.
On the ANA....I also posted that IVIG WILL give you a +ANA for up to 4 months after discontining treatment. It does not mean you have disease. The half life of IVIG is 21 days, so in 21 days, half the antibodies are gone.....in the next 21 days half of those left are gone.....in the next 21 days half of the ones are gone etc.....by 4 months they are all gone.
What testing is done for autonomic neuropathy,, at Mayo I had a sweat test,,, tilt table test, Qsart test,, and according to them I passed that,,, but I still think something is going on,, today food is just going down so far,, and as for bowels,,, everything broke loose this moring,,, last couple of days,, not much of anything,,, I cango all day without the need to urinate,, I just dont feel like i need to,,, the neuropathy is just getting worse,, and I have been on hte phone all morning,, but like most of teh doctors here,, NOTHING
Sounds like they did an autonomic battery.
I had to discontinue almost all of my meds to unblock my system....then only add a little at a time. I can barely tolerate ANY meds.
Thanks Inga,, I do recall when they did tilt test that when they stood me up,, my blood pressure dropped,, and heart rate went up, or maybe I have it reversed,,, but they said that was supposed to happen,,, when all the blood starts to run to hte legs,, the sweat test,, they put that powder,, corn starch with dye on it and then stick you in the oven,, I sweated normally except for top and bottom of feet and hands,,, all I can tell you is that pain is horrible,, and almost every move I make feels like its not normal,, like my body is just trying to respond to commands,, but its not wanting too,,, I have no idea whats going on,,,
I passed out on the tilt table, BP went to 56/30. The orange powder did not turn purple anywhere. I emerged orange, same as when I went in. I had abnormal QSARTS and valsalva. I was not on any meds to speak of when I had this testing. There are a lot of meds they don't want you on when you take the test.
I know you are in pain, and neuropathy, either large or small or both, causes some awful pain. I am having that issue right now myself....only if I take anything very strong, it shuts me down autonomically. I really have a mess.
I was denied the new painpills the Neuro wanted me to take,,, Insurance wont cover it,, its 240.00 for the meds,,, guess I suffer,,, SIGH
Just wanted to comment on treatments for neuropathy for those with less severe cases so they won't be discouraged from trying plaquenil and other similar drugs.
"Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. "
This was in the article Carolina shared with us earlier:
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#115883208
I personally have improved a lot with plaquenil and NSAIDs and lots of exercise. I went from barely making it through the day from horrible neuropathic pain to being able to avoid almost all of it.
It's all so complicated. I saw this thread because Dr. Birnbaum was mentioned. He's the one who got my doctors pointed in the right direction.
Good luck to all of you. I'm really sorry so many of you suffer.
Neuropathic pain is not responsive to NSAIDS or DMARDS.
Neuropathy generally requires something that whaps the nervous system down. Horrible neuropathic pain is that....non-responsive. It is hard to believe that neuropathic pain would not respond to ever increasing doses of narcotics, but it doesn't. One ends up on more and more and more, just to end up feeling awful from it. There is a limit to what one can take. SSRIs, SNRIs work for some folks, not me. Antiseizure meds work for some....they do a bit better for me, but I become a moron. Beta blockers help some, except lately, now I get severe leg pain from them....Narcotics in effective doses plug me up royally. I suspect the problem affects some of us with bad neuropathy.
I think that if Plaquenil helps a person, they should take it.
DMARDS don't do a thing for neuropathy, but, pain comes from OTHER things too. My bursitis feels like a neuropathic pain, is quite severe and is NOT neurological pain, it is inflammatory pain. So by all means, try a DMARD. I have a great deal of joint pain which is separate from the neuro pain.
Autoimmune disease is inflammatory, regardless of the etiology of the neuropathy, and DMARDS and NSAIDS can help with the connective tissue inflammation which can also be disabling.
These are TWO different types of pain. Of course all pain is 'neurological' since nerves carry pain signals. But the pain signals from a bursitis are due to the nerves being compressed due to inflammation and an anti-inflammatory will bring down inflammation. Neuropathic pain is due to damaged nerves, and they will continue to fire and cause pain, until medical science finds a way to knock them out. So far, they haven't done real well with that.
Severe neuropathy IS bleak. I will be honest. That said, one can fight to overcome the effects of it. It requires the mental conditioning of a professional endurance athlete. It requires that one push with the energy needed to do a marathon, every day.....without the medal when one is done. I was an endurance athlete and I can say this is harder. I farm, so I do get a lot of resistance exercise but not the cardio I am used to. That said, I am tearing things constantly due to connective tissue disease.
People won't be discouraged from trying plaquenil. To get the 'big guns' most people have already tried Plaquenil. BTW, Plaquenil is an itch inducer and those with neuropathy may not tolerate it. My rheum put me on it, and I called my neuro with horrible itching and he said, he knew that would happen and explained that the skin is full of small nerve fibers and Plaquenil aggravates them. They stopped the Plaq and put me on IVIG and Lyrica. Insurance won't pay for Lyrica.
Prednisone is used for neuropathy. I had 16 weeks of methlypred IV. I still get shots occassionally in the bursae.
Navydad, appeal the decision on the pain meds. I have won my appeals for meds. I am at the point now, that I take very little.....not because I want to, but because my autonomic system is such a mess, we can't figure out what it tolerates.