Have posted about a flare that started late in May and my flares usually begin with neuropathic issues. I had my first flare in 2003 and it got better before I got into a rheumy. Tests have never been positive blood work wise, other than a raised high sensitivity CRP. I am gluten intolerant and am so very careful and hardly eat out as I am that sensitive (no antibodies, but my mom doesn't either and hers is severe with digestion). Usually prednisone reverses a flare in high doses pretty well. I have been off prednisone and any immunosupresive meds and been okay, but this flare isn't responding. My legs hurt so bad and they are weak and I am on 50 mg of pred and 1000 mg of cellcept daily and still it hasn't stopped. I have had 3 - 4 EMG's in the past 12 years and only one showed neuropathy and the arthritis clinic lost it, but it got me on Imuran which helped over time. I don't have a current neuro and the rheumy is unsure how to treat different. I have had MS testing and they wrote that off about 5 years ago. If the flare is bad, it gets in my face and jaw and I suppose that's trigeminal neuralgia. I just need to get better as I have to go back to work as a teacher in early September and I am really getting scared. Any info is appreciated as I feel I am kind of flummoxed and worried. I don't have disability insurance as I don't qualify and I just want to know we are treating in the right direction. I thought small fiber neuropathy didn't cause weakness? Thanks, sorry its so long, I am just upset about this.
Hi trc1962.
Sorry to hear you are struggling. I have just come back from Johns Hopkins where they did the punch biopsy to test for small fiber neuropathy. No results yet. Neuropathy is indeed my worst problem currently. I really have no dryness that bothers me. The neuropathy makes my legs weak. They feel like I've run a for miles! I think the neuropathy causes the weakness.
The Doctor at JH told me to continue the Plaquenil and Lyrica for a few more weeks to give them enough time to be effective. My local rheumatologist suggested Rituxan when I saw him in June. I have an appointment with him this Thursday and will really appeal for the Rituxan. I too teach and want to go back in Sseptember. I took a leave of absence last semester because I was so ill and of course it took months to figure out what I had and then to figure out treatment. The neuropathy scares me but the JH Doctor said that it typically does not progress rapidly.
I couldn't tell from your post what your actual diagnosis is. It's also interesting that you aren't responding to the prednisone. I did prednisone when I was first diagnosed and my neuropathy improved considerably.
If you put "neuropathy " into the search bar on this site, you will get a lot of information about what others use. I think some have had success with methotrexate, others with I V I G.
What do you teach? I hope you get help soon - I so well know the feeling of September looming and not being sure if you're quite up to it!
Take care! Anastasia.
Thanks for the reply. I teach elementary fitness and health and really love it! What do you teach and at what level? After the 12+ years of dealing with the autoimmune issues what they call mine is gluten sensitivity/vascular neuropathy and possibly secondary sjogrens. When this all started my eyes were very dry but I was on restasis for awhile and then the Imuran really kicked in and I haven't dealt with truly dry issues in years. I was tried on plaquenil at the beginning of all this and unfortunately it causes my scalp to be intolerably sore after 2 doses so it had to be stopped. I felt terribly sick systemically when this all began and the Imuran lifted all that as well. I would love to still be on it, but my body got used to going around it and I needed higher doses and it was made me jaundiced. The prednisone is helping I am sure or I wouldn't be functioning, it just isn't stopping the inflammation as much as in the past. My dr. has spoken of rituxan next and I see him on Monday and am hoping he will consider it. I deal with raynauds in my fingers and feet and this winter I became sun sensitive on my face which is new - even under my hair line and bangs would turn it an awful red. I have had some hair loss as well but the prednisone helps that. My TSH has been testing high for over a year now but the thyroid hormone has not. The endo says he cannot test me until I am off the prednisone for a month to get an accurate reading. I am hoping that that isn't playing into this flare too. I will hope you can return to teach and maybe rituxan will help us both! Sometimes I just have to vent about all this than a family member who doesn't deserve it. Thanks!
I am negative for antibodies as well. I was having tingling in my toes and sometimes in my hands. Being 60 years old, some of this may just be degenerative in nature, but it did coincide with the sicca symptoms. I had very low vitamin D and after taking 4,000 iu's for one month, it totally resolved. This is only anecdotal, but worth mentioning. Now if I could only find something to help with fatigue??
I take liquid D and vitamin B complex as I don't absorb oral stuff well - damage maybe from the gluten sensitivity? I really think my present flare goes back to a respiratory virus I got on about May 14th, a respiratory virus has set me off before. I can tell when I get the crawling feeling on my scalp, although most times a prednisone course shuts it down. This time it has effected my legs up to my waist but long ago it bothered predominantly my left side - arm, leg and face and thus they just kept thinking MS. I do have a couple of UBO's and 2 stable white matter lesions that haven't changed since I had my first MRI 12 years ago. Thanks for the reply and I will remind my dr. to check my levels tomorrow.
My PN is so severe I wear braces to walk and my lower legs have atrophied terribly.
It is the most disabling of my Immune Disorder conditions.
The most painful is my Osteoarthritis, because the inflammation of my Immune Disorder plays havoc with my OA.
My coronary artery disease, also a result of my Immune Disorder, is the most dangerous condition, of course.
That I am alive and enjoying life and the beautiful sunny day (tho 88 and humid, thank goodness for AC) is a true miracle.
This forum is my lifeline.
Hugs, Elaine
First, sorry to hear all of this.
Second, neuropathy can have many causes. After years of chasing my SjS I found a good rheumatologist and my neurologist came to know me well enough, and both ran enough tests, to learn that my bigger problem is really my spine.
I have degenerative disc disease in my neck and lumbar spine, stenosis, and multiple bulging discs. I have neuropathy in my toes that I just reported to my neurologist on my last visit (which resulted in a lower lumbar MRI which showed the stenosis in my lumbar spine).
While I'm not sure whether your circumstances permit, I strongly suggest finding a neurologist if you are able. Frankly, mine has been best overall at assessing and figuring out both that I had an AI and have the other issues that I have.
FYI I've not found that my neuropathy makes me weak. I do get fatigued, which I believe is from my SjS, but that's different. I do sometimes have trouble climbing stairs, three flights is nearly impossible, but attribute it to my back not weakness.
I teach too, but all online thankfully so don't have to do a lot of running around. That said I walk a lot, but always in short spurts.
Best to you.
Wow, so many do deal with so very much and it makes me thankful that I am not in a worse position. I have worked with a neuro before, but usually I see them, they test for neuropathy and find nothing and therefore just send me back to my rheumy because "there isn't anything wrong with you neurologically." I want to (through this issue) have a neuro on board all the time to help with the situation as that might give me more treatment options. I do have some cervical issues in my neck, although they don't seem to be presently causing issues it is something to watch out for. I see my rheumy tomorrow and we have talked about a cervical MRI to rule out anything that might be contributing, but he has not ordered it quite yet. I do have connective tissue issues with my skin and raynauds but so far I have not had any organ involvement. I hate prednisone because of the moon face/double chin and bone loss, but right now I am trying to remember that it is helping with inflammation and I am watching what I eat and drinking lots of water - and taking extra calcium and D. Hoping everyone has a good day and that we all find the strength to deal with these autoimmune disorders however we can. I had been well so long that I kind of thought it was gone...not to be, however, I can live more carefully in the future and not stress my body.
Hi :)
Have you had your VitD levels checked out? I used to wake up eveery porning with numb hands and numb feet and tingling right up to my knees.
My VitD levels were low. Once i started to take a VitD supplement the tingling improved significantly. Hands to elbows now find. Feet still burn but the tingling up to the knees has gone.
Not a cure all - but worth investigating.
Take care - Scottie :)
Thanks for the suggestion, I will ask my rheumy about checking this. I do take liquid D and B12 and I know the B12 is very good - can't hurt to ask about the D though. I saw my rheumy this morning and he seemed uncomfortable with my neuropathic stuff and is ready to hand me off to a neuro tomorrow (the apt isn't until the end of the month). I just have to do all I can to take care of me the best I can until I can see the neuro - waiting if frustrating when I need to find of what is going on...part of how medicine works I guess. My legs ache and burn bad between 2 -6 am and drive me nuts. They also feel wiggly. The rheumy suggested gabapentin but it makes my head so heavy the next morning, so I asked for lyrica and we will see if the insurance wants to cover it.
I have some questions as I am exploring all of this on my own (as we all do to help ourselves and be informed). Can small fiber neuropathy cause this? My rheumy said it wouldn't cause the pain in my face, but I always get it with a flare. I just can't poop well for the life of me and I have tried miralax to no avail - lots of cherries helped a little but usually they leave me using the bathroom quite often. Maybe I am having some autonomic issues as well. I am uneasy on 50 mg of prednisone for the unknown future. trying to stay positive and care for me the best I can until I can hopefully get answers. The rheumy did track down my lip biopsy from 12 years ago and said it was somewhat positive, but not definitive...sigh.
Hi there. Since I have the same problem when I flare of weak legs, numbness and pain in face, bowel issues, I am thinking that I might have autonomic neuropathy. I have suggested it to my NP, but she wants me to be regular first. Right..... Metamucil, and all those other wonderful things only cause me to have the pressure of diarrhea but all that comes out is marbles. So, I canceled the appointment with the NP this Friday morning and am going to wait until I see my rheumy on August 5 to bring this up. However, the last time I saw a neuro, he thought I was silly. I wish you luck. Read about autonomic neuropathy and see if it fits.
Yes, I believe when I flare I deal with some autonomic neuropathy with my stomach not emptying and not being able to poop anything like usual. I went and did some gentle swimming this morning and it felt good, but now the burning is very bad in my legs and left arm. I can get a neuro consult/EMG done at a hospital in Seattle in a few days instead of waiting until the end of the month here and I am considering it. The dr. (neuro) here will have his nurse practitioner see me July 27th and talk with me about avoiding gluten...I have not had gluten in 12 years and I don't need to talk about this, I need a test to figure out what this is and if the treatment is correct. It is like banging your head off a cement wall sometimes just to get basic stuff done. Test for the neuropathy now, while it is active so I might have a more accurate diagnosis and treatment plan. They (doctors) need to trust those of us who deal with autoimmune issues with our bodies over many years as we are usually pretty dialed in...it is how we function! I think that is a prednisone rant because 50 mg is making me crazy!
I've had sensory disturbances on and off for 8-9 yrs. No one could find what was wrong. Now I have the dryness. My sensory issues were tingling, crawling, pin prick and burning sensations. Anxiety made it worse. Movement helped. It was weird. During my last episode, I started taking magnesium and the flare slowly went away....
Dear trc,
I, personally, think that when we have an Immune Disorder, a FLARE highlights all the ways in which our Immune System has been attacking us because the Inflammation spotlights them with pain, burning, tingling, autonomic problems,and in a myriad of other ways.
My Immune System attacks me using biochemicals not autoantibodies. Medical science only has tests for autoantibodies at this point. This is why what we are suffering isn't always showing up on tests.
You do need to see a neurologist because there are good tests to establish the damage that comes from Neuropathy.
I have pain, tingling and burning and stabbing, in my face, lips and tongue from small fiber neuropathy. So I take 3600 mg of neurontin to keep the discomfort at a minimum. Perhaps I should try 4800 mg to see if the minimal discomfort will go away? It is hard to know. It's always trial and error.
I am overwhelmingly tired of this now. The attack of sciatica is lingering, and my Essential Myoclonus is still present. I just seem to keep adding problems, trc. So I understand your rant!
Hugs, Elaine
Did you ever have your Vitamin D checked? How is your stress right now? Both of those can make whatever is happening, worse.
Julie, I didn't know whether or not you were asking me about my Vitamin D level.
So I checked it.
I take a Vitamin D3 supplement and with it my results are:
Your Value Standard Range
Vitamin D Total, 25OH 34 ng/ml 30-100 ng/ml
So even with the supplement my number is on the low side, but I don't have a deficiency.
Stress, I've been very stressed by Sciatica, limb jerking, 94 degree heat, and constant medical tests.
It will get better, right?
Hugs, Elaine
I am going to ask my rheumy to check vitamin levels to see if that could be effecting me. A few years back I saw a neuro that said I had no thiamin levels in my body and I was on a supplement for quite awhile - it wouldn't hurt to ask my rheumy to check things. I dropped my prednisone down to 40 mg (at rheummy's request) the past 3 days and I was hurting sooo bad I had to take 10 more...it helped quite a bit, so I guess that will help him know that despite normal sed rate numbers this is inflammatory in nature. I am convinced.
I have bizarre NP. I feet itch. Then when it gets bad, I get the bee sting feeling and generalized pain and tingling.
When the itching first started, I thought I was getting bitten by small spiders or something. It would only be one small area and I would scratch myself to the point of bleeding and bruising. My Rheumatologist said, no, that's not neuropathy, it sounds like and allergy and gave me a long list of substances to avoid. Three months later, I'd ruled out an allergy to each of the items, and he agreed that it had to be Neuropathy of some type.
Today, I take Neurontin for other nerve problems I have related to a back injury and Klonopin for the Neuropathy. If I miss a dose of the Klonopin, though, I'm back to scratching myself bloody and get the bee stings and pain.
My family doctor says I do everything differently than expected and she's learned to listen to what I say because she believes I know my body best. Too bad it's taken so long to find such an understanding doctor.
I hope you can find a way to get your neuropathy under control,
Tracy