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Old 01-19-2011, 09:26 AM #1
catloucle catloucle is offline
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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.

Last edited by catloucle; 01-19-2011 at 09:27 AM. Reason: to add content
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Old 01-19-2011, 09:39 AM #2
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Here are some medical studies on this drug:

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

Quote:
Fifty-four per cent of the leflunomide group and 8% of the control group had an increase in their neuropathy symptom score 6 months into the study
http://www.ncbi.nlm.nih.gov/pubmed/19916579
Benefit-risk assessment of leflunomide: an appraisal of leflunomide in rheumatoid arthritis 10 years after licensing.
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Old 02-16-2011, 07:33 AM #3
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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.
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Old 02-16-2011, 07:58 AM #4
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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.
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Old 02-16-2011, 10:49 AM #5
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It will take some time to resolve, if it is going to at all.
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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)
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Old 02-16-2011, 11:11 AM #6
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No, I am just encouraging you to be patient.

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!

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.
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Last edited by mrsD; 02-16-2011 at 12:05 PM.
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Old 02-16-2011, 07:52 PM #7
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Default 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. 's!! Just do your best to get the best help you can and don't give up! - j
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