RA in remission. Why is SFN not better?
 

My rheummy and neuro both agree that my neuropathy was caused by my RA. I was diagnosed with both in 2007. Now that my RA is in medicated remission (with enbrel and leflunomide) why is my neuropathy (both legs and arms, hands) not getting any better? I thought if you control the cause then it would get better or even resolve. I have a positive marker for connective tissue disease, but I do not have any other diseases. My rheummy checks me over and does lots of blood testing every 2 months.

Shouldn't my sfn be getting better?

It may be the leflunomide:

http://www.medscape.com/viewarticle/538209

You can join medscape for free easily. They have a strict copyright so I cannot copy things here from there.

This drug has always been controversial, and FDA at one point was accused for favoritism for approving it in the beginning.

The damage done to nerves takes a long time to repair itself, even longer if the axon is damaged. To expedite this you should be doing everything you can to provide an optimal environment for your nerves to heal, nutrition, supplements, exercize, avoiding substances or medications that are toxic to nerves.

Thank you, mrsD. I never thought about the leflunomide. I was put on it after I couldn't handle the methotrexate. I actually had sfn symptoms before RA symptoms and prior to being put on any meds. I will discuss with my rheummy on my Monday appointment.

Thank you, echoes. I am working on all your suggestions. Exercise is difficult because my left leg is weak and causes me balance problems so I have been using a cane for the last 2 years. I just moved to an apartment with a small gym, so I will try the treadmill at very slow speed and hang on to the sides. I also need to quit smoking.

I haven't been able to exercise, but I did quit smoking on Aug 1st of last year.
I used Chantix for 12 weeks and it worked quite well to reduce the urge to smoke. I haven't smoked in over 6 months.

Catloucle i was just listing things that could help nerves to heal. I know firsthand how hard it can be and sometimes impossible to do everything that someone else may be able to do. All we can do is our best. If you cant do the exercize thing as much as you would like,maybe you could concentrate more on the supplements, diet and as Dahlek points out here from time to time, find out about those side effects and interactions with medicines and herbs.

EXERCISE is anything you can do to Move your body! there are ex. to be done from a chair....etc

Hi, Bob. Whenever I hear Chantix it makes me shudder. My husband had used it a couple of years ago and never stopped smoking the entire time. And it turned him into King Crab-***.

Hi, mrsD. I spoke to my rheummy about the leflunomide and he said if it did effect my sfn that I would be the first in all his years of practice. I told him that I was always special. He is very afraid of my falling out of remission since it took me 3 years to attain it. He suggested that I take half my dose (10mg instead of usual 20) and see how I feel after 3 weeks. If I flare after 3 weeks to go back on usual dose. If still ok, then I could stop taking it and keep taking the fish oil. And of course to stay on the Enbrel injections.

Here are some medical studies on this drug:

http://www.ncbi.nlm.nih.gov/pubmed/17229252

http://www.ncbi.nlm.nih.gov/pubmed/19916579
Benefit-risk assessment of leflunomide: an appraisal of leflunomide in rheumatoid arthritis 10 years after licensing.

mrsD, I am now completely off the leflumonide and so far my RA is behaving. I was on statin med for high cholesterol, but stopped that months ago and am currently taking the red yeast rice in its place.

So now I am off all PN offending meds and concentrating on my supplements and here's hoping I can see some progress in calming down my SNF symptoms and pain.

Red yeast rice contains compounds similar to lovastatin, and carries a "statin" warning. It may not be 100% safe, PN wise.

It will take some time to resolve, if it is going to at all.

You can help with CoQ-10, acetyl carnitine and lipoic acid.

It will take some time to resolve, if it is going to at all.
************************************************** *

mrsD...I feel like a dagger just went thru my heart. Are you trying to tell me that I may be wasting my time and my money on supplements (that I cannot afford) trying to ease my RA and SFN? This board has always been so encouraging and positive for everyone else. I am only 53 and have had RA and SFN for only 4 years. I am trying so hard to try to get off disability and go back to work to get off this crappy medicare so I can afford my medications. Please tell me why you think I am just spinning my wheels. (I am crying as I am writing this)

No, I am just encouraging you to be patient.:hug:

It takes time for healing to occur. The drug you were on, the studies say the neuropathy may resolve... but they don't give time frames.

Also everyone is different. Damage to nerves is tricky and some people heal quickly. I would not take the red yeast rice now at all...it complicates things. Some brands have illegal lovatstatin added to them, and the FDA is always gunning for this product and removing things. Swanson just had some taken off the market just over a year ago! (China is common in the adulteration of red yeast rice before it gets to USA).

People often expect fast results from supplements. We have learned to expect drugs to work fast. Swallow a pill, and that all there is to it. And that mindset is not what works for PN patients at all.

We've had posters here who start to improve in say 3 months.
Those who were low in D and B12 improve faster. The mitochondrial support supplements are slower.

But there are no guarantees here unfortunately. If you saw Dr. Oz yesterday, you'd be afraid to drink water from your tap....he is pushing water filters in the home big time. Lead, perchlorates, arsenic, Chromium-6 etc! :yikes:

I am so sorry you are feeling alone and in pain that way. It all can be very overwhelming at times. I do not think you are spinning your wheels at all. One does however, need to be patient. Stress is very bad for PN, and seems to make it flare and hurt more. This is an inflammatory response that is difficult to control. We all get that way at times here.:hug:

Catloucle? please heed Mrs D, and be patient?
 

WHY? Because nerves can die in seconds [and in a very painful way to boot] But they regrow about 1/4-1/2" a month! That 'seems' painfully slow? But when you consider ALL your nerves are like plant roots? [Ever take a pot grown seedling out of the pot? All those tiny fibers?] We are talking about a lot of new nerves [or, a heap of them] growing and trying to find and learn their directions and instructions!
All I've been able to learn about nerve re-growth has been hard to find and usually NOT about sensory nerves. What I have learned is the following:
When nerves die-It's a constant, continuous pain until they die completely...if they die completely? There is NOTHING! If partly dead? They will essentially keep trying to 'send' signals to the brain or wherever asking for instructions. Which they may or may not get correctly this time. Depends on the overall damages.
When nerves HEAL? This is a different sort of pain...to me it's eye-opening and downright startling, as I can feel a whole nerve line either tremor of do a lot of ZAPS for about 5-10 minutes. They then either 'connect' or try another route and you get 'relief' of sorts.
So the latter Pains? I sort of look forward to... the others? Well, not a lot you can do for them other than get good suggested vitamins and supplements into you to help the nerves heal properly and more rapidly.
Think of one set of key nerves re-growing at that 1/4-1/2" each month? That many nerves likely equals MILES of nerves! It's your own personal 'highway', in a way, ever see a highway built overnite?
As long as you can FEEL SOMETHING? That IS good! To feel absolutely nothing? THAT is cause for concerns...and call the neuro rite away and see him/her!
Either way, the different pains to me, are GOOD signs. That I still have some nerves to work with! So take that in stride, learn to distinguish the different pains and learn more about how to adequately describe your pain[s]. It's not easy, it's very subjective and each of us feels things differently and, at different 'levels' of pain. :hug::hug::hug:'s!! Just do your best to get the best help you can and don't give up! - j

I totally understand the process and patience required with very slowly regenerating nerves. I am even having new pains in my feet which I have not had in over 3 years. Although painful, I consider it progress.

The part of the referenced quote from mrsD that upset me was the "...if it is going to at all." I am sorry for overreacting. Because I very much respect all her knowledge and willingness to help others, and positive disposition--that is why I freaked out.

mrsD, please accept my apology. I was simply trying to let you know how I was feeling in my neurotic (maybe borderline psychotic) words.

Hey cat, I betcha most of us have freaked over PN at one time or another.:hug:

hi there
I have lupus (which is a connective tissue disease like RA) and my sensorimotor neuropathy is caused by my lupus. But, treating my lupus has never had any affect on my neuropathy. I even have rituxan treatments, and my neuropathy continues to deteriorate.

So, I have absolutely no faith in the 'treat the disease and the neuropathy will improve' theory. It doesn't with lupus, which is in the same group of diseases as RA, so personally I don't like your chances. I post on a lupus board, many have neuropathy, and they seem to have the same experience as me.

Sorry to be so pessimistic, just the way it's been for me.

regards

raglet

There is no cure for PN. If it is a result of another ailment or disease, treating one probably will have little or no effect on the other. You can be cured of a 'curable' problem, but if it has created nerve damage or nerve death, you still will be stuck with PN- chronic and at this point incurable. PN problems have been known to subside with treatment, or surgery- of nerve compression, but that's another story. So is supplements, and meds, to promote nerve growth.

Dear Raglet, the theory is "controlling" or "putting into remission" the disease that is causing the neuropathy. I gather your lupus has never been in remission and I am so sorry about that. Of course if lupus is not in remission then you cannot halt the progress of neuropathy. I have been lucky enought to undergo 2 treatments of plasmapheresis and 1 of ivig which has halted further progression of my neuropathy past my knees. I hope you can find a treatment for your lupus that will help you go into a remission. There is no way of knowing how long a remission will last as it it not a cure.

Dear Bob B, I am fully aware there is no cure for my neuropathy or my RA. The theory states as long as there is control (for ex, diabetes or pre diabetes) or remission (like in RA), of the disease causing the neuropathy, at that point, correctly handling the neuropathy thru supplements, diet and exercise should help bring down the pain a few steps so that the neuropathy should feel better. Also use of amiltryp... (forgot the spelling) has a chance of promoting possible nerve growth. All this per postings on this PN site. I have no areas of numbness and no nerve death. That is why I am trying to stay so positive.

Hello to all. I Sincerely appreciated all your input whether I view it as positive or negative for my situation. I now have "complicated grief" from my husband's death 6 months ago and am now dealing with my sister having terminal cancer of the cerebellum and brain stem.
I know stress makes my neuropathy worse, but I am seeking help to deal with it. I am not a ticking time bomb, and I have a couple of friends keeping an eye on me.
I am now being weaned off my effexor and adding elavil at night by my neuro. I am off my simvastatin, leflunomide, xanax, tramadol, ambien and red yeast rice. I have added a very slow workout on the treadmil, and trying to eat healthier and take all suggested supplements.
My stressors are going to be a roadbump in my progress for awhile, but I am working on those also. I have hope that as long as I can keep my RA in remission all my work to help my sfn will help to make my sfn pain better or at least more manageable so I can eventually get off disability (thru their "Ticket to Work" program) and work full time again. That is my hope and my prayer. I am going to work really hard to make this happen eventually, as I know I must be very patient.

Sounds like you're doing all the right things, catloucle. I'm so very sorry to hear about your sister. You have had such a hard time of it without this new burden.


But I'm rooting for you. Please keep us updated on how you're doing.:hug:

Thank you, JoanB. My sister died yesterday at 2:45pm. Thank God it was peaceful. She was only 48. That is such a damn shame. I can't take too much more right now...Cat

I am so sorry for your loss :hug:

At such a young age too!

i am sorry to hear of the passing of your sister and your husband. May they both rest in peace and look over you.

So sorry to hear about your losses. I hope you can find some solace in their memories and that better days are coming your way. You certainly deserve that.