Author Topic: help with neuropathy and what helps you  (Read 519 times)

trc1962

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help with neuropathy and what helps you
« on: March 21, 2021, 05:51:05 PM »
I have had neuropathy for many years and although they have no proof, they call it small fiber neuropathy. I haven't really had much going on with it for 10 years as long as I listen to my body and then I got the vaccine and it has returned strongly. I am so sad about this as my life has been very good. I opted for the vaccine as I don't want covid, I knew there were risks with my neuropathy, but I was hoping to get through it okay and I didn't. I got a lot of help from 2003-2011 from Imuran, but eventually it caused my liver #"s to rise so I had to stop. I was put on mycophenolate sodium and it has helped some. I had an infusion of rituxan in 2017 and while it did help I think in quieting things down, it gave me terrible seb derm with large weeping sores that lasted over a year. I lost a lot of hair from the inflammation and it was an oil slick and that was not fun at all. Has anyone tried IVIG? I just want to be ready when I meet with my rheummy later this week to ask questions about. I also get some atonomic neuropathy where my stomach doesn't empty right and my eyes don't adjust to light correctly, wierd I know. I have been on a low prednisone taper 3x10 mg and 3x5 mg and it hasn't seemed super helpful but maybe because the dose is so low. Thanks for any input. Please don't be scared of the vaccine if you do fine with them overall, the virus can be bad. Thanks.

Floridalady

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Re: help with neuropathy and what helps you
« Reply #1 on: March 21, 2021, 07:07:10 PM »
My friend started taking Cymbalta and it has helped her quite a bit.

Anna


meirish

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Re: help with neuropathy and what helps you
« Reply #2 on: March 21, 2021, 07:48:02 PM »
I am s sorry that you are having so many issues with the neuropathy. I have it in my hands and arms but I know that it is not as bad as yours.

I have been on IVIG since 2006 when I was diagnosed with Myasthenia graves which is an autoimmune neurological disease. I have 5 autoimmune diseases all total and I know the IVIG has saved me from a world of misery and possibly early death from the myasthenia. However, I don't think it has done a whole lot for my sjogrens and hard to tell if it has helped the hashimotos or autoimmune hearing loss.

I think it would be wise for you to bring this up to your doctor. IVIG is given for neurological issues such as small fiber neuropathy. There is a huge demand for IVIG and doctors write the script for their patient and it has to go before a board that decides when and if a person can get it at the present time. They have to be very careful not to run out or to overuse it as there has to be IVIG enough to treat the illnesses that come up that need it to get them through really severe illnesses on an emergency basis.

I do think that they are fair but doctors have to be prudent. Go for it as  you are suffering and need the help. I get 80 grams which is a big dose and got it every month since 2006 until a few months ago when it was changed to every 6 months due to my decreased kidney function.I have gotten along quite well on it. When you get it they give you something like Benadryl and tylenol and usually some type of short acting IV steroid that protects you from having any type of reaction. The nurses are knowledgeable and you have to be sent to a special floor or place that does only infusions.

I made a lot of friends over the years at my infusions and I always slept a lot as this is one place that no one can make you go or come or work. You are a captive audience and napping is really nice. Please let us know if you are able to get some help. Good luck. meirish

Carolina

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Re: help with neuropathy and what helps you
« Reply #3 on: March 22, 2021, 04:05:41 AM »
I have small fiber neuropathy.  When untreated my skin feels like it's on fire and that there are needles poking into the ends of my fingers.  Even my eye lids burn, my lips and the tip of my tongue burn as well.

To stop the pain of small fiber neuropathy I take 3600 mg of gabapentin daily.  It works.

I have profound peripheral neuropathy in my legs and feet.  I wear braces and walk with a walker.  It's not painful, although the sensation in my feet is such that contact with metal feels like burning, I don't know why.

For the pain of my osteoarthritis, which is severe, Cymbalta and Aleve were my salvation, for years.  After 6 years I developed a serious side effect from Cymbalta (and all SSNI and SSRI drugs), and had to stop.  I also developed gastric and esophageal erosions, and can no longer take any NSAID.

The nerves that control my moisture system (tears and saliva) are damaged, my esophagus has nerve damage, as does my small intestine, and my bladder.

I am also Immune Deficient and have had IVIG every four weeks, since 2013.  35 g of Gamunex C.   I have my infusions at home now: a nurse comes and stays with me for four hours every four weeks. But this is NOT the therapeutic High Dose of IVIG that is given for neuropathy and autoimmune conditions.

The therapeutic HIGH dose of IVIG for neuropathy autoimmune conditions is some version: beginning at .25 gm per Kilogram body weight gradually increasing to 1 gm per Kilogram, increasing as rapidly as possible, and the doses are given fairly close together until the highest level is reached.   You can Google this topic.

I was not considered a good candidate for High Dose IVIG because my neuropathies were severe and of long duration.  I think treatment with High Dose IVIG is most effective when started early in the neuropathy.  But I'm not sure.

I wish you all the best.

Elaine




Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

trc1962

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Re: help with neuropathy and what helps you
« Reply #4 on: March 22, 2021, 07:06:02 PM »
Thanks for your answers. I let my rheummy know what was going on, the burning, the pain, the buzzing feeling, slightly off balance at times-all things I have experienced before and he said I should see my primary, I am flabbergasted and angry. He is a new rheummy in the past year and obviously doesn't understand sjogren's and the neuropathy that can come along with it. I miss my old rheummy who was very involved, consulted other doctors and was really great, of course that is why he left and went to a very large rheumatological clinic. I get some relief from gabapentin, but the feeling of constantly having to go to the bathroom is not fun. Where do I go from here, I don't know. I just wish I had lots of positive test results so it was easy to treat me. Any ideas you all have are appreciated. I received the vaccine 3 weeks ago this Friday and it took about 1 week before I noticed symptoms of a flare (neuropathy) returning. Thanks.

Carolina

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Re: help with neuropathy and what helps you
« Reply #5 on: March 23, 2021, 08:21:46 AM »
Dear trc,

Neuropathy is, in my opinion, best assessed and treated by Neurologists.

They have the training, the experience, and the tools to assess and manage neuropathy.

You must rule out several causes, and consider several ways to treat neuropathy.  There are genetic causes, environmental causes (toxins), spine nerve compression problems, conditions like MS that can cause neuropathy, brain tumors, chemotherapy treatments, diabetes, many Auto Immune conditions, and more. 

My pervasive neuropathies are caused by my Immune System using Cytokines to attack the organs and systems (mostly nerves) of my body. 

My general takeaway after over 10 years of neuropathy and neurologists:  there is usually nothing to cure neuropathy, or even slow down the progress.

See a neurologist and don't expect miracles.

Best wishes, Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

rnathans

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Re: help with neuropathy and what helps you
« Reply #6 on: March 23, 2021, 09:29:25 PM »
I agree with Elaine that you should find a good neurologist to manage your neuropathy. I also think you need a new rheumatologist. These problems should not be managed by your primary. Not fair to you or your primary.

meirish

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Re: help with neuropathy and what helps you
« Reply #7 on: March 24, 2021, 05:43:14 PM »
It is normal for a primary to refer a person with neuropathy of any kind to a neurologist. A primary doesn't have the knowledge to deal with this. It is amazing how complex these issues are. Unfortunately with sjogrens a person ends up with many specialists. The medical profession has become so much more complicated because of the huge increase in knowledge over the years.

I graduated from nurses training years ago and can believe how much more the nursing education books are. So much to learn these days. I have been going to a neurologist for years and it really helps as I have so much problem with neuropathy caused by carpal tunnel etc and she does the EGM testing for these problems.

She also does MRIs of the brain on occasion to make sure I a not having any autoimmune issues in the brain. Sjogrens can cause so many problems that are seldom talked about so we have to be proactive. I have an ENT for ear, nose and throat problems and have had one salivary gland surgically removed.

I also have a Gastrointestinal doc as I have issues with my colon from Sjogrens. Not everyone has every issue but be aware that our primaries can't deal with it all. I go to an internist and he cant deal with everything either. Hoping you can get some relief and answers. Also, if you are going to be assessed and need IVIG the neurologist can order it. A primary cant as they are not specialists in a specific part of the body. MOre of a generalist on things and knowing where to send us off to a specialist. Good luck. meirish
« Last Edit: March 25, 2021, 09:08:21 PM by meirish »

trc1962

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Re: help with neuropathy and what helps you
« Reply #8 on: March 25, 2021, 07:56:25 PM »
Well the rheummy says 7-10 more days lo steroids 5x10, 5x5. I take gabapentin about 2 or 3 times a day (100 mg) if the pain is bad. Ii is worse in the afternoon and evening. I am looking for a neurologist that is familiar with sjogrens and the neuropathic side of it. My brother lives in Seattle and I can visit and I will look there for the neurologist. Nobody in Spokane specializes in neuropathy and I will need it. I always need to remember sjogrens is always there under the surface even when things are good. I have gluten intolerence (mom and brother are celiac), I have raynauds, neuropathy and sometimes autonomic symptoms when flares are active and now the derm says erythromelagia in my hands, feet, face and ears. This stuff is not fun and I am learning to deal with it and watch my diet and not eat things that flare it. Thanks for your replies, I learn a lot from this board from those who have lived it.

SjoGirl

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Re: help with neuropathy and what helps you
« Reply #9 on: March 28, 2021, 12:04:32 PM »
You have gotten great advice. What I found is that the right neurologist, who understands all of your ailments and also understands possible treatments can be a life-saver. Mine does not have a great bedside manner, but it was he who referred me to a second rheumatologist after the first one had ample evidence of my illness but never told me.

He also figured things out every time a drug was giving me trouble and he ordered EMG testing for suspected neuropathy. The first time I had the EMG done I wanted to yank the probe away from the technician because it was so painful (my neuropathy on my right side was minor). The second time, on the left side, I barely felt it (not a good thing).

I took Gabapentin for a time but I'm oddly on in pain from my neuropathy (literally knocking on wood), rather I become concerned because I can't feel what I should be able to feel.

FYI the Foundation for Peripheral Neuropathy (copy to search online) foundationforpn.org/what-is-peripheral-neuropathy/evaluation-and-tests/. There is also a good book on the topic although what I learned is that neuropathy is not well understood and like Sjogren's, there are only treatments for the pain.

On a related note, I was told this week that it was a good thing that I stopped Imuran about three months ago (due to other health issues and treatments). My rheumy said that they are finding that the risk of melanoma increases after four years on that drug.

Wishing you the best.

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« Last Edit: March 29, 2021, 03:46:01 AM by Linda196 »
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

trc1962

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Re: help with neuropathy and what helps you
« Reply #10 on: March 28, 2021, 06:20:19 PM »
I appreciate the tips and ideas as those who live with this have experiences and information to share. Yes, Imuran can eventually lead to b cell lymphoma in some people and with needing a higher dose it was causing liver #'s to rise. I have never found anything that totally put me in remission like imuran did. I did take the H1N1 vaccine and though I was achy, no big flare like this one. I have developed what looks like livedo reticularis on my legs and behind and it is quite red and gross looking and I wonder if this is a sign of the inflammation? They call my neuropathy a "vascular neuropathy" so I wonder. It is painful and it is terrible in my rectal area, where it burns and creates strange symptoms. I believe the prednisone helps, but when the short course is over I will be back where I was. On a plus side, the prednisone makes me quite busy (I have ADD) and my kitchen is very clean today. How does one go about finding a neuro in the Seattle area that treats my form of neuropathy? The peripheral neuropathy society? Mine hides and only once has it been found with EMG. I was sent to an MS specialist 17 years ago who looked at my legs and said that is vascular my dear and you do not have MS. Thanks to all.

I deal with: Sjogren's, raynaud's, gluten intolerence, neuropathy, flushing in hands, feet, face and one ear, chiari malformation and a mast cell issue of some type.

meirish

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Re: help with neuropathy and what helps you
« Reply #11 on: March 28, 2021, 11:22:20 PM »
Have your checked out the universities that are in the area. Most teaching hospitals are a good place to start as they usually have doctors on staff for teaching medical courses plus running clinics associated with the universities.

Also, try calling the doctors offices associated with some of the big hospitals and asking to speak to the nurse manager or the head nurse. You can explain your dilemma and that you are planning to come to Seattle in order to have an assessment done and need a neurologist who deals with autoimmune diseases. Actually, many neurologists do deal with neuropathies of many kinds and with autoimmune diseases. Myasthenia Travis, multiple sclerosis and many diseases that neurologists deal with are autoimmune in origin. There are many neuropathies that neurologists have to sort out.

Many times a nurse manager will know which doctor is one that would be good for you to see. Do not be discouraged though if you are not happy with him/her. There is a murphy's law associated with finding a good doctor. Just because they have all the credentials you may find that they don't meet up with  your expectations. Anyone with autoimmune or any chronic disease can attest to that. I was lucky and the first one I tried was great and I still have her. I have some other specialists that I have traded in for new ones. It is hard at times and we just have to keep plugging.

It took me close to 40 years to get my sjogrens diagnosis and then another 3 years to get my other 3 diagnosis. I got one diagnosis one year before the sjogrens. However, the old saying that autoimmune diseases run in packs did not seem to get anyone else attention for a year. I have had to go actively seeking for doctors except for one. In fact, my good ENT I called a big hospital in the cities and got a name from some service they had referring people to doctors and I lucked out on him in 1997,

Keep the faith as you will find one and you also learn a lot on the way to finding new doctors but it is a real drag plus being exhausting. Good luck. meirish

trc1962

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Re: help with neuropathy and what helps you
« Reply #12 on: March 29, 2021, 09:59:12 PM »
Thank you meirish, I will check with the university of Washington as I am sure they have some neurologists that treat neuropathy. I will keep at it until I find somebody that I feel good about following me. There are always good times with little issues, but then flares happen and it would be so good to have a neurologist on board to help me through these times. It is strange, but my legs don't bother me at night , but during the day. This makes sense if it is vascular as the inflammation keeps my nerves from getting what they need. Everyday I learn more. Thank you.

trc1962

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Re: help with neuropathy and what helps you
« Reply #13 on: April 02, 2021, 03:06:47 PM »
Still dealing with excruitiating pain in the afternoons and evenings and I did more research. I read that ciprofloxacin (I was given for my kidney infection) can cause neuropathy, nerve damage and tendon issues...crazy. I can't understand a doctor giving it to me with my chart full of neuropathy. It is probably a rare side effect, but gosh I didn't need help restarting neuropathy. Well, it is never boring this life we lead.