Neurofolin

[dugga]

Hi @Kira - I just googled neurofolin and you can buy it online for AU $62.95 - I'd never heard of it. There was a link on the online store to this article: http://www.9news.com.au/national/2017/09/16/19/12/depression-folate-supplement-australians-suffer
I tried St. John's Wort years ago and all I got was a bad reaction so I'm not convinced when I read of the latest fad supplement. Doesn't sound like enough research has been done with drug interactions and side-effects. @Ash600 thanks for your research - when I got prescribed pristiq there was a warning to avoid grapefruit so I asked the pharmacist and she told me that grapefruit contains an enzyme that effects how drugs are absorbed in your gut and can magnify side-effects. Bit annoyed as I have a large grapefruit tree and I enjoyed a grapefruit juice

 

[SillyOldBear]

@Ash600. thanks Ash. I just got home from ER. Could not pee again. They did NOTHING for me. Told me to stop the celexa and metha....whatever. Go ahead with Diclofenac. And see a urologist. They did force a urine sample and peed after that and peed a few minutes ago when I got home. Will email my doctor shortly and try to get in to a urologist sooner then next Thursday and pray that I can pee until I see one.
PS I have used a PPI, but those can cause either liver or kidney damage long term so stopped taking it.

 

[Ash600]

Hi @Kira - I just googled neurofolin and you can buy it online for AU $62.95 - I'd never heard of it. There was a link on the online store to this article: http://www.9news.com.au/national/2017/09/16/19/12/depression-folate-supplement-australians-suffer
I tried St. John's Wort years ago and all I got was a bad reaction so I'm not convinced when I read of the latest fad supplement. Doesn't sound like enough research has been done with drug interactions and side-effects. @Ash600 thanks for your research - when I got prescribed pristiq there was a warning to avoid grapefruit so I asked the pharmacist and she told me that grapefruit contains an enzyme that effects how drugs are absorbed in your gut and can magnify side-effects. Bit annoyed as I have a large grapefruit tree and I enjoyed a grapefruit juice

Pity about your grapefruit tree @dugga. Its the substances contained within the grapefruit called furanocoumarins and to a leser extent flavoinoids which are the culprits. These will inhibit the cytachrome P450 3A4 enzymes which are foumd within the gut and liver and is responsible for breaking down many drugs. As a result, this can lead to elevated drug plasma levels and hence the likelihood of increased side effects.

Following link will give more details and which drug groups are more susceptible to this type of interaction:

https://www.nhs.uk/news/medication/prescription-drugs-and-grapefruit-a-deadly-mix/

 

[Ash600]

PS I have used a PPI, but those can cause either liver or kidney damage long term so stopped taking it.

It is a rare occurence that PPIs can cause hepatitis, jaundice or interstitial nephritis. It really depends on which particular one has been prescribed, sometimes they are given at no more than upto a certain dose in patients with hepatic or renal impairment.
However, I understand your concerns for not wanting to take PPIs, but an alternative may need to be considered if you are to continue with Diclofenac so as to prevent the possibility of any NSAID induced ulcerations.

 

[dugga]

Pity about your grapefruit tree @dugga. Its the substances contained within the grapefruit called furanocoumarins and to a leser extent flavoinoids which are the culprits. These will inhibit the cytachrome P450 3A4 enzymes which are foumd within the gut and liver and is responsible for breaking down many drugs. As a result, this can lead to elevated drug plasma levels and hence the likelihood of increased side effects.

Following link will give more details and which drug groups are more susceptible to this type of interaction:

https://www.nhs.uk/news/medication/prescription-drugs-and-grapefruit-a-deadly-mix/

Thanks for that @Ash600 - that's quite a comprehensive list of medications and it seems more are being added all the time. Also limes are listed as another fruit to avoid... that's another tree I have. Looks like I'm OK with my lemons, mandarines and naval oranges though. So can I interest anyone in a few dozen ripe grapefruits? free :rolleyes: Limes aren't ready yet.... give it a couple of months.

 

[Ash600]

Thanks for that @Ash600 - that's quite a comprehensive list of medications and it seems more are being added all the time. Also limes are listed as another fruit to avoid... that's another tree I have. Looks like I'm OK with my lemons, mandarines and naval oranges though. So can I interest anyone in a few dozen ripe grapefruits? free :rolleyes: Limes aren't ready yet.... give it a couple of months.

Throw the limes my way, they go well with vodka!!:cool:

 

[Karen Triggs]

In Australia it hit the Pharmacy shelves only last month so no "public" responses on if it's helpful/side effects etc.
It takes 6-8 weeks to see any benefits so there's no feedback here yet.

Anyone from overseas have any experience or knowledge of this?

One the 4th day of taking it I was so bad emotionally that I had to call a crisis line. Something had just hit me like a ton of bricks. I couldn't even explain why I was feeling that bad. I've honestly never felt that bad before. I stopped taking it after about 6 days as it was the only new thing that I had started taking. Within about a week of stopping it I went back to feeling "normal".

Any info would be helpful and appreciated. You don't need a prescription for it either which seems odd as it's for "depression".

@Ash600 I'd love to hear what you have to say Thanks.

In Australia it hit the Pharmacy shelves only last month so no "public" responses on if it's helpful/side effects etc.
It takes 6-8 weeks to see any benefits so there's no feedback here yet.

Anyone from overseas have any experience or knowledge of this?

One the 4th day of taking it I was so bad emotionally that I had to call a crisis line. Something had just hit me like a ton of bricks. I couldn't even explain why I was feeling that bad. I've honestly never felt that bad before. I stopped taking it after about 6 days as it was the only new thing that I had started taking. Within about a week of stopping it I went back to feeling "normal".

Any info would be helpful and appreciated. You don't need a prescription for it either which seems odd as it's for "depression".

@Ash600 I'd love to hear what you have to say Thanks.

 

[Karen Triggs]

I know that folate, which may be slightly different from Neurofolin, can aggravate depression in some people as it has an effect on the methylation of neurotransmitters. I am an undermethylator so folate is not recommended for me. I cannot explain the science or neurochemistry clearly. This apparantly also the reason why SSRIs may work well for some but not others. The important thing I think it to be able to speak with medical professional who is knowledgable and knows your history well. I am going to do some more investigation on this.

 

[Debarina]

Kira- my GP recommended this last Mon so I've been on it for week & a bit. I take it in sachet each morning & notice my very down mood is levelling out to a numb feeling & my constant crying prior to taking has stopped

I take no meds so I'm only on this so all I can do is but trial it

I've taken 2 weeks off work to rest so the only thing I've noticed is at night I have these yawning fits for a few minutes. I'm sleeping better tho & I'm sure once I get back to the gym will de stress further so for now I'll give it a crack.

 

[Yums]

Kira- my GP recommended this last Mon so I've been on it for week & a bit. I take it in sachet each morning & notice my very down mood is levelling out to a numb feeling & my constant crying prior to taking has stopped

I take no meds so I'm only on this so all I can do is but trial it

I've taken 2 weeks off work to rest so the only thing I've noticed is at night I have these yawning fits for a few minutes. I'm sleeping better tho & I'm sure once I get back to the gym will de stress further so for now I'll give it a crack.

So I started taking Neurofolin in Australia for 2 weeks now, I have never been more angry, irritable in my entire life. I just can’t do prescription meds so I thought taking natural remedies would be better. I was so wrong, this made me so teary and partner told me to put in the trash 2 days ago. So it’s been 2 days that I have not taken it and I feel so much better. I had a really tough year thus far. Things are slowly but surely getting better. There’s some light at the end of the dark dark tunnel.

 

[Debarina]

Now months later I'm taking it every other day it's super helpful with clearing dark moods

 

[Ever Ready Bunny]

Hi Kira, I did some digging around for you, results were a bit variable, but here goes....

So Neurofolin contains L-methylfolate as the "active ingredient." which is a vitamin B group derivative. Therefore it can be classified as a health supplement and so does not really have to be licensed as a medicine. As a result of it being placed under the grouping of the vitamin and the mineral market, it can be widely available to the general public. Although it is claimed to be used for depression, the loop hole used to avoid it only being available via prescription is by not having a direct claim to be used for the treatment of depression. The magic words "may be useful for the managment/treatment of...." is permisable as its not a direct claim. and so is not subject to the stringent restrictions/regulations of actually classified medicines. (Don't know about you, but these technicalities are beginnning to give me a head spasm :eek.

Anyhow, L-methylfolate is still undergoing research. The basic claim is that it can be used as an adjunct in the treatment of depression, whereby it is thought it may help to augment the effect of currently prescribed meds. It is thought to be able to increase the production of the neurotransmitters serotonin and dopamine which play a role in mood regulation. Now I'm just hypothesing here, but if you are on any prescribed meds for depression or anything else for that matter, then there could have been an interaction causing you to feel the way you did. Or it could have been just a reaction you had to only Neurofolin.

As you are probably aware, people can react differently to medicines and vitamin (and herbal) supplements. Things to also bear in mind generally regarding the vitamin/mineral/herbal supplement market, is that the level of active ingredient actually available for absoption can actually vary between manufacturers hence the potential for variable responses.

The jury is still out on L-methylfolate regarding its effectiveness (and safety) for depression as more studies are needed. I've provided a link here which may help to illustrate this :

https://www.nhs.uk/news/mental-health/vitamin-d-fish-oil-and-folates-may-enhance-antidepressants/

All this draws to mind the time when St Johns Wort first hit the market for helping with depression. At first it was hailed as the "feel good" or "sunshine drug" because if its apparent effectiveness. However, it had a propensity to interact with so many drugs, including those for the treatment of mental illnesses, resulting in serious side effects so now it is hardly recommended.


In terms of safety, Kira, (and anyone else brave enough to have read up to this point ) please always let your doctor or pharmacist now should you wish to use any over the counter supplements in case they might conflict either with your prescribed medication or an existing medical condition.

Phew, that's me done now, hopefully this will have earned me the Nobel Peace Prize or at least one cold beer:p.

I have severe treatment resistant depression- failed so many drugs, TMS, ECT left me with long term memory loss -and have been tested for the MTHFR enzyme. I have 3 out of 4 deletions. I am homozygous for C667T and heterozygous for A1298C which means I only have 10% of normal activity, so 10% of the normal ability to change folate in my diet to methylfolate and hence make neurotransmitters. I was tested just over 3 years ago and commenced Thornes methyguard version of methylfolate which helped enormously- not just my depression but my skin, hair, nails, energy, healing of cuts- I’d never realised how slowly I healed- and I was no longer covered in bruises. I also went from not being able to run 10k in less than an hour to a PB of 47 mins!!
I changed to Neurofolin at the end of 2018 and was dramatically better. Neurofolin is 15mg if L- methylfolate which is the form of methylfolate that helps depression. Most methylfolate you can buy is a combination of the 2 forms of methylfolate- L and R, mirror images of each other- and therefore not as effective.
In November 2019 the TGA suddenly withdrew Neurofolin over the wording and the debate over it being a medical food supplement which can be bought over the counter - as I understand it and I find the legal Info very confusing- versus a medical drug therapy which would need prescribing.
Anyway I ran out 2 weeks ago and changed back to my old version and within 48hrs was depressed. I doubled the dose and was a bit better but Wednesday I relapsed badly and am now in hospital with suicidal ideation having ketamine.
A friend without deletions had tried it- under recommendation of her psychiatrist - and found no benefit, she didn’t like the taste and she stopped it. I now have her box and within an hour of taking it I was 100% again.
I’m writing this in case other people have had the same experience since stopping it.i have 2 friends who also have deletions and also benefited incredibly from it and have also relapsed since stopping it.
I have contacted grunbiotics who make it and although you can’t buy it over the counter your doctor can still apply for it under the special access scheme. I am going to be on to my doctor first thing today! The federal health minister is making a decision very soon as to whether to overturn the TGA’s decision and make it available over the counter again. If he upholds the TGA’s decision it could be 1-3years before it is available again which is terrible for the people who benefit from it-it’s just a vitamin but one that is essential for those of us with a genetic deletions.

 

[Ever Ready Bunny]

The only other thing I’d add is to get tested for MTHFR deletions - it’s just a blood test via QML or S and N in Australia- before taking it. I don’t know but I’m guessing people who have bad reactions to it may not have deletions and not need it.