Neuropathy and SLE

[Mari]

Hi,

I have posted a question before and thank you very much for your answer. I would like to ask another question about peripheral neuropathy and SLE.

I am on Neurontin 200 mg twice a day. My question is if the cause is an inflammatory response will Neurontin help? I still continue to take IV Solumedrol and this is helping the numbness and tingling I have. It is hard for me to tell if the Neurontin is helping or not or if it's the Soludmedrol. I am wondering should I ask my doctor about this.

Also I have benign fasciculations that have been going on for years. I have severe cramping in my feet and calves mostly at night. Is this associated with the fasciculations? I take Klonopin at night and it does help, but I wake up several times during the night with the cramping and usually the fasciculations are bothering me at that time also.

Again hank you for your time and help.

[mstaffo]

I was diagnosed with idiopathic peripheral neuropathy two years ago & suffered with severe pain in the feet and hands until I began a regime of B12/B1 injections along with Vitamin E (1200 IU of a brand with high levels of gamma tocopherol), alpha-lipoic acid and B-complex.  In addition, I was told by an N.D. that clorella, colostrum and cetylmirastoliate would be helpful. I am faithfully injecting 2 cc of B12 along with 1 cc of B1 two to three times per week. When the dosage was lowered, the pain returned. A test for B12 levels was taken & it was low/normal. Hope this helps someone else...

[Snowy]

Hi Mari, I also have SLE and have peripheral neuropathies. Your question about the neurtroin and inflammation and is it helping you. Yes the steroids are to help with the inflammation but the neurtroin is to help the nerves in the area to calm down so that they can heal or just stop causing you so many problems. Neurtroin is somewhat like my Elvail is but it is classified as a eplisepy drug and the Elvail is an antidepressent medicine.  God knows we should be depressed, but for unknown reason to doctors these meds. help the nerves to settle down enough for us to give us some kind of relief.  So with the steriods and the Neurtroin, in your case the doctor is trying to get your condition under control. I don't think there is much more they can really try at this time.  I am in the same boat.  I hope this has helped is some way.  And I am sorry I rambled on like this.  Email me if you have any questions.  Ava

[franny faye]

Certainly I agree that the steroids are probably necessary for controlling the inflmation from your lupus.  I just wanted you to know that the neurontin, which is desgined to control the sensation of the neuropathy (though not its cause) can be increased to control the pain.  Like you, I suppose I fear the masking of symptoms.  You are a step ahead of many people, because you really care about your treatment and are concerned about all aspects.  I hope you do well.

[franny faye]

Certainly I agree that the steroids are probably necessary for controlling the inflmation from your lupus.  I just wanted you to know that the neurontin, which is desgined to control the sensation of the neuropathy (though not its cause) can be increased to control the pain.  Like you, I suppose I fear the masking of symptoms.  You are a step ahead of many people, because you really care about your treatment and are concerned about all aspects.  I hope you do well.

[Mari]

Thanks for your concern,

Yes, I am VERY aware of all the side effects of steroids. I don't take them that often, and don't like to take them, and my doctor does not plan on me staying on them long term. He is careful and uses the lowest possible dose.

I have been in a very bad flare from my Lupus and the numbness/tingling has been bad so that is why the Soumedrol right now. It does help. I'm just not sure if Neurontin helps with this also if it's inflamation causing this. That was my question. Lupus doctor says this can cause permanent nerve damage if not gotten under control with steroids.

Good luck to you also

Mari

[Mari]

Hi,

Thanks for your concern. Yes I'm aware that the dose can be titrated up much higher than what I'm taking. The question is does Neurontin help if my problem is from inflamation from Lupus?

My Lupus doctor says if this is not gotten under control it can be permanent. That is why the steroids. I had a neurologist put me on the neurontin.

Take care,

Mari

[Mari]

Thanks for the sugestion. I'll give it a try.

Good luck,

Mari

[AMO]

Hi Mari,
I don't know about neurontin myself but know folks on it, some it helps others not. I am concerned about your solumed treatments, how often and how long do you have them? and has your doc explained all the long term side effects? It may be wise to really figure out if it is helping you or not, you wouldn't want to be taking it if it isn't doing anything for you.
Good luck Mari

[franny faye]

I came today to try to post a question myself.  I couldn't get in, but I did read your question.  I thought I could mention a couple of things.  I am also on neurontin (I have MS).  I understand that patients are to be titrated up on doses (your dose will increase as you tolerate the medicince).  I have heard of patients who take huge doses.  To me, the medicine lasts about two-three hours, and then it simply stops working at all.  I am up to 300 mg twice a day and 600 mg at night.  I understand that this does can safely go higher, as the doctors may order.  I share your frustration over trying to get relief for what is going on.  I only recently started coming to this forum, but I think it is a great thing.  I hope you get relief from your neuropathy, and I hope you maintain your health.  Blessings to you.

[kd re: longstanding MR]

I don't know if this will help in your situation but I have peripheral vascular disease and I would get severe cramping in my legs and feet at night.  I have finally found relief by untucking the covers at the end of the bed and folding a bath towel to about 12" square, putting it in a pillowcase, and then placing it between my knees as I sleep.  The towel moves with you as you turn and takes some of the pressure off of your other leg while giving you a better position.  You might want to give it a try.

[CCF Neuro[P]-M.D.-RPS]

Dear Mari:

As we talked about previously, SLE is an autoimmune disease.  One of the symptoms of SLE can be peripheral neuropathy, the exact etiology of this is unknown but likely it is an inflammatory reaction.  The neurotin does not treat the inflammatory response, but it will help with the symptoms of the peripheral neuropathy.  The steriods actual help treat the underlying cause of the peripheral neuropathy-your SLE disease.  Yes, cramping can be associated with benign fasciculations.

Sincerely,

CCF Neuro MD