Glutamine and RLS Does anyone have any info please?

[charlottesgrandmom]

Hi! Please help if you can. I just finished breast cancer chemo and have now developed peripheral neuropathy despite wearing ice on my hands and feet for two hours during treatment. My RLS was finally pretty under control because I went on Trazadone 50 mg. Still taking. .25 Mirapex and Lunesta. Now they said to take Glutamine for the neuropathy and it did help but low and behold the RLS came back. I read a little bit that it might be from the Glutamine? And possibly NAC - N acetyl cysteine might help? Does anyone have any experience with either Glutamine or NAC?

I stopped the glutamine and Neuropathy is coming back.

Thanks so much.

[SueJohnson]

Glutamine is known to make RLS worse in many as you found out.

[charlottesgrandmom in reply to SueJohnson]

Hi Sue, What about NAC? Thanks alot!

[SueJohnson in reply to charlottesgrandmom]

I don't know much about it. I would ask your doctor.

[charlottesgrandmom in reply to SueJohnson]

Thanks Sue. I was doing so much better since you had alerted me to the trazadone.

[ChrisColumbus]

A couple of possibly helpful comments and link about NAC in this chain:

healthunlocked.com/rlsuk/po...

[DicCarlson]

I have tried NAC numerous times - as recently as a few nights ago. I see that I commented in the link above as not seeing much benefit. But, I noticed the other night that when waking in the middle of the night - I felt "drowsy" as opposed to my usual "wide-awake" feeling. So, I will give it another try in succeeding days and report back. I am terrible for not keeping track of daily supplement and food intake and possible effects good and bad. Here is a good article...

selfhacked.com/blog/nac-top...

[Hidden in reply to DicCarlson]

Any updates on NAC DicCarlson?

[DicCarlson in reply to Hidden]

Yes, I stopped taking it. (NAC Sustain by Jarrow). It seems to be excitable for me. Of course it could be the combination with other supplements I take. I am having fairly good sleep with Ashwagandha (ksm-66, 200mg) and L-Theanine (100 mg). I take other supplements during the day, but these 2 right at bedtime and another L-Theanine if I wake up early enough.

[Hidden in reply to DicCarlson]

Thanks for the update. Were you taking NAC in the morning or nighttime?Similarly, I tried COQ10 recently. It gave me an amazing all day energy boost but sadly I had to stop it as it caused insomnia, even taking a low dose first thing in the morning.

[DicCarlson in reply to Hidden]

I took it at night - it a Jarrow is a bilayer tablet - immediate release then extended release. I thought of taking it in the AM. Beware of paradoxical reactions. Forever I tried Magnesium - many different forms and it totally kept me awake (it's supposed to be relaxing) - even taking it in the morning! Lots of anecdotal reports of the same thing - but could never see any reasoning for a cause.

[BoldMove]

I am planning to try NAC on the advice of a friend whose daughter has had great success using it for her RLS.

[108512bea]

I would stay away from the mirapex at all cost! That came straight from my doc at Mayo. Unfortunately I was on for about 15 years with providers adding the dosage as symptoms got worse. Dopamine agonists are bad news as far as withdrawal…currently on neupro patch but symptoms seem to be lessened but still have. I hope you get some good advice in feeling better. I’m

[charlottesgrandmom in reply to 108512bea]

Hi , I have had severe RLS for 23 years. About 21 years ago I was prescribed 1-4 Mirapex (.125 mg ) per night. That was before we knew any better and it worked for years until last summer when it got so bad and I found out about this forum and realized I had to get off it. So I got down to 2 pills from 4 or 5. Finally got on the trazadone and that has helped it tremendously. I recently went through chemo and now have side effects from that. Couldn't deal with withdrawing any more till I got through the chemo. It has been ok but it kicked up again with the glutathiamene which I started taking for the neuropathy, I might try glutathione now or NAC. No Dr. around who is an expert. Neurologists just want to prescribe you neurontin or more mirapex. Johns Hopkins has not been accepting new patients though I am trying that route again.

[tagaxel]

Why is the Mirapex prescribed?

[charlottesgrandmom]

Hi , I have had severe RLS for 23 years. About 21 years ago I was prescribed 1-4 Mirapex (.125 mg ) per night. That was before we knew any better and it worked for years until last summer when it got so bad and I found out about this forum and realized I had to get off it. So I got down to 2 pills from 4 or 5. Finally got on the trazadone and that has helped it tremendously. I recently went through chemo and now have side effects from that. Couldn't deal with withdrawing any more till I got through the chemo. It has been ok but it kicked up again with the glutathiamene which I started taking for the neuropathy, I might try glutathione now or NAC. No Dr. around who is an expert. Neurologists just want to prescribe you neurontin or more mirapex. Johns Hopkins has not been accepting new patients though I am trying that route again.

[Pam34]

I too developed peripheral neuropathy while having chemo for breast cancer. How long since you finished the treatment? Mine did clear up or at least to a level where I could stop worrying about it.

Pam

[charlottesgrandmom in reply to Pam34]

hi pam. Thanks for getting back to me. I finished three weeks ago. Now I might get have facial neuropathy too. Feet and hands were bad but now are settling down. How long did yours last? I did the ice treatments too which was painful and I guess didn’t work.

[Pam34 in reply to charlottesgrandmom]

I don’t think it took too long but I don’t think it has ever gone completely. I’ve just got used to it. Never tried the ice treatments. It’s the fatigue that gets me more than anything else. And the worry of course.

Really hope it continues to improve for you. It all becomes a bit too much sometimes doesn’t it?!

[KellyDBrille in reply to Pam34]

Have you tried vitamin D? A study showed that Vitamin D helped prevent the neuropathy associated with the drug used to treat breast cancer, so perhaps it might help diminish it?