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Patient LDN experiences

Posted today at ldnresearchtrust.org/

Kristie, Tennessee
Hi All
I am on LDN for 3 months now and feel WONDERFUL!!! My neuro studied all I gave her on Ldn for 4 months before she started it on me. I was in a study for antibodies for Rebif and tested very high so I was taking shots for years that wasn’t working at all…I took copaxone first,then rebif.the betaseron and solumedrol every 2 months and still had exasberations every few months. I have over 50 lesions in my brain & spine and am walking.climbing,watching grandchildren again and working outside in extreme heat now with no problems..
my neuro has started another patient ( a nurse on ldn ) I saw her the other day at doc’s office and she too is great. she comes far away to see my neuro and works herself at a doc’s office. That doctor is so impressed he started a patient with pancreatic cancer on ldn…Her blood levels have dropped significantly…Hope she stays that way..
just had to let all know how ell LDN is doing for me

http://www.ldnresearchtrust.org/forums/index.php?showtopic=975

From:

http://www.revolutionhealth.com/forums/brain-nerves/multiple-sclerosis/1249

earthling's Profile
Anyone care to discuss their experience with low dose Naltrexone (LDN)?

Posted 06:21PM (EDT) on 2006-10-26 in Multiple sclerosis by Site Presenceearthling

Responses 1-33 of 33 Average Rating9.2


pageNum = 1;
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JaminJim's Profile
I have been on Low Dose Naltrexone 3mg 1 x day for more than 2 years now.  I have not noticed anything other than my mood was a bit less depressed when I first began taking Low Dose Naltrexone.  I have not had an MS attack during that time.  It is hard to say whether that is from the Naltrexone or the Rebif or the weekly 50,000mg vitiman C IV.  Who knows what has been the reason, maybe just the luck of the draw.

I also have been thinking about talking to the Doc who prescribes Naltrexone to change the dose to 4mg.

0 Ratings & reviews

Posted 08:32PM (EST) on 2006-12-29 by Site PresenceJaminJim

JoyceF's Profile
I’ve been on 4.5mg of LDN for almost 5 years. No MS attacks but there may be some slight progression. I feel this is the best thing going for those with MS, personally. I’ts not easy to convince neuros to try something that is not mainstream but hey, this is our life and we all have the right to it so don’t take no for an answer. Join the group at yahoogroups to connect with thousands that are taking it. Good luck to all that come here to read and hope for answers.

10.0 1 Rating & review

Posted 11:34AM (EST) on 2007-01-05 by Site PresenceJoyceF

SammyJo's Profile
I just posted my story on LDN for MS at this site, and the news that patients have banded together to fund the 1st human trial of LDN for MS at Univ. CA. see http://www.LDNers.org

10.0 1 Rating & review

Posted 02:29PM (EST) on 2007-01-15 by Site PresenceSammyJo

scrifton's Profile
I started on 3 mg of LDN in May ’06. My flexibility seemed to improve immediately and I began sleeping through the night ( didn’t have to get up 3 times to go to the bathroom!). We were in France in July during the hottest week on record and usually that kind of heat would be a huge problem for me, but I actually kept up with my husband as we walked through all the hill towns in 100 degree heat. That was amazing to me!

I upped my dosage to 4.5 in October and didn’t seem to be doing nearly as well. My left leg started dragging again and I stopped sleeping well.

I’ve dropped back down to 3.0 but it’s only been 2 weeks so I haven’t noticed too much improvement yet. I’m definitely going to stick with it – the first 3 months were fantastic and I’m hoping to get back to that stage if I persevere. I have read that it can take 6 to 9 months to really make a difference.

I was on Rebif for 4 years prior to the LDN and that was a very expensive joke. When I started it, I was classed as very mild relapsing-remitting and my neuro at the time told me Rebif would dramatically slow progression. Well, now I’m Secondary Progressive and my new neuro said that Rebif  has no effect whatsoever after 2 years! So why was I on it for 4? Could it be because it costs $2000.00 a month?

LDN is cheap and effective unlike Rebif, so give it a try. It has no side effects  whatsoever so what have you got to lose? I would also like to recommend a book called “Up The Creek With A Paddle” about LDN. It had a lot of helpful information.

Good luck, everyone 🙂

10.0 1 Rating & review

Posted 06:24PM (EST) on 2007-01-17 by Site Presencescrifton

Gabi's Profile
I was diagnosed in May of 2004 but all symptoms were very mild so I opted to just wait and see instead of the taking the typical ABCRT drugs. When my feet began to tingle 18 months later I knew for sure that I had MS and since I did a lot of research in those 18 months I decided that LDN offers the most hope. I have been on 4.5 mg for over a year and all symptoms that were just mild to start out with are now gone completely. No more tingling feet, no more weak legs, no more cold hands but lot’s more energy. I think that taking LDN, especially so early in my progression, was the best decision of my life. I get it from Skip’s Pharmacy in Florida and anyone considering LDN  should call him up and talk to him. It is an amazing drug with no long term side effects and it has so much to offer, not only for MS.

10.0 1 Rating & review

Posted 08:20PM (EST) on 2007-01-18 by Site PresenceGabi

pjmax023's Profile
I’ve been taking LDN for about 4 years.  I feel that it has me at about 75% of my former self.  I still cannot run and I still fall over particularly in the summer at Cedar Point (which I go to with my daughter a couple of times a year).  All in all I feel it is a wonderful drug.  pjmax023@yahoo.com

7.0 1 Rating & review

Posted 09:09AM (EST) on 2007-01-21 by Site Presencepjmax023

pjmax023's Profile
I’ve been taking LDN for 4 years.  I feel it has brought me back to 75% of my former self.  I still cannot run and also fall over periodically particularly at Cedar Point (which I go to a couple of times each summer with my daughter).  I am taking 4.5mg.

8.0 1 Rating & review

Posted 09:13AM (EST) on 2007-01-21 by Site Presencepjmax023

anonymous
16 days ago JoyceF wrote:

I’ve been on 4.5mg of LDN for almost 5 years. No MS attacks but there may be some slight progression. I feel this is the best thing going for those with MS, personally. I’ts not easy to convince neuros to try something that is not mainstream but hey, this is our life and we all have the right to it so don’t take no for an answer. Join the group at yahoogroups to connect with thousands that are taking it. Good luck to all that come here to read and hope for answers.

10.0 1 Rating & review

Posted 10:55AM (EST) on 2007-01-22 by Anonymous

Aletha's Profile

My husband started symptoms for MS in Sept. of 2004, right after a very stressful month in his life. His symptoms came on very quickly and strongly.  He was greatly fatigued, depressed, he had bladder frequency, he could not use the cordless screw driver and he could not shoot baskets.  For 2.5 months he would go to work and come home right after lunch.  The Nero wanted to put him on one of the crab medications, but we found LDN and decided to try that first.  The first day after taking LDN, he went to work and stayed the whole day, his fatigue was gone.  Within a week his bladder frequency was gone.  Within the next few months he was back to 2 sports a day.  It has been over 2.5 years now and he is still doing great.  His MRI’s show no new progression.  In fact the one lesion he has no longer enhances.  He gets his LDN from Irmats in New York.  The chat site on Yahoo for LDN has grown from just over 200 people to over 2000 people in the past 2.5 years.  People all over the world have been finding out about LDN.  It is only about $15-30 per month and there are only minor side effects that typically go away within the first month.  It is non-toxic.  The longest that someone has been taking it for MS has been 17 years and she is still doing great.  This is the way to go for MS’rs.  If I had MS, Parkinson’s, Fibro or any other auto-immune disorder this is the way I would go, without a question.  It is good to have my husband healthy and happy.

9.0 1 Rating & review

Posted 02:58AM (EDT) on 2007-05-04 by Site PresenceAletha Updated 03:02AM (EDT) on 2007-05-04 (view previous version)

earthling's Profile
Thanks everyone!  It would be terrific if you have a few minutes to do a rating of your LDN experience. This is a more permanent way to document the experiences. Here is the page where you can rate LDN for Relapsing-remitting MS.

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Posted 02:08PM (EDT) on 2007-05-04 by Site Presenceearthling

earthling's Profile
Apparently UC San Francisco is running a clinical trial on LDN for RRMS (its the third item on the page).

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Posted 01:13AM (EDT) on 2007-05-15 by Site Presenceearthling

NathanKennard's Profile
2 years on 4.5 mg / night LDN has resulted in halting of disease progression and an infusion of hope coupled with a bright expectation for a long and healthy life. Copaxone on the other hand had provided only pain, depression, site reactions and increased brain damage. LDN should be a first recommendation.

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Posted 08:48AM (EDT) on 2007-06-07 by Site PresenceNathanKennard

momofsix's Profile
Suddenly, in mid-September 2006 I lost my ability to walk.  I was 39 years old and I considered myself in good shape — my weight was under control, I was walking 3 or more miles every day, I was probably in the best shape of my life!  But over the course of a week my legs stopped functioning.  Doctors were baffled by me and after spending 4 days in the hospital, they still did not understand why I couldn’t walk.  I spent the next 5 weeks using a walker and being told that my symptoms would go away on their own.  I was told repeatedly that I did not have MS.  On the recommendation of a friend who has MS, I began 3 mg of LDN in late October 2006.  Within three days my symptoms had reversed themselves and I was walking again — without a walker, without a cane — it was nothing short of an amazing miracle and a gift from God!

I was on 3 mg of LDN until February 2007 then switched to 4.5 mg.  I continue to do well!  I still have symptoms (twitching in my arms and legs, occasional muscle spasms, aching and pain, shaky legs, fatigue, etc.).  However, the main difference now is that my legs are under control again.  As I’ve repeatedly explained to my doctors, I still feel everything going on in my legs the main difference now is that my brain controls my legs again and they can function and walk again.  I’m even back to walking for exercise purposes.  I can’t do everything that I did before (I really need to pace myself) but I’ve been walking about 2 miles a day 3 to 4 times a week.  Pretty good for someone who used to walk with a walker, huh?  One of the best things is that my husband and kids now have their wife and mother back.  To God be the glory — He has been very good to me!

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Posted 10:04AM (EDT) on 2007-06-07 by Site Presencemomofsix Updated 10:33AM (EDT) on 2007-06-07 (view previous version)

NathanKennard's Profile
I have been on LDN 4.5 mg / night since June, 2005.Prior to that, 1 year on Copaxone. Whereas on C I had new lesions and the old ones enlarged, on LDN, all lesion activity in my brain became inactive. Most importantly, the downside of Copaxone was reversed. On LDN, depression went away, MS symptoms went away, I have had no exacerbations, I have tons of energy, and my outlook on life is filled with hope and a bright expectation of a long, healthy and productive life.

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Posted 10:34AM (EDT) on 2007-06-07 by Site PresenceNathanKennard

beaniedee4's Profile
My husband is 51 years old and just found out he has MS. He will be taking Copaxone once a day is this a good medicine. Can someone tell my about it please
Thanks

0 Ratings & reviews

Posted 07:40PM (EDT) on 2007-08-07 by Site Presencebeaniedee4 Updated 07:40PM (EDT) on 2007-08-07 (view previous version)

earthling's Profile
Hi beaniedee – yes, Copaxone is one of the primary medications used to treat RRMS (along with Avonex, Rebif, Betaseron and now Tysabri).  Here is where you can read up on the user ratings of Copaxone for RRMS.

Interestingly, LDN is said to be compatible with Copaxone, but not wth the interferon meds (and I don’t know about Tysabri).  Does anyone else wish to say anything about using LDN with one of the other meds?

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Posted 08:48PM (EDT) on 2007-08-07 by Site Presenceearthling

gagirl7's Profile
I was diagnosed almost 5 months ago.  I was on Avonex but my liver enzymes went up. I am still in the process of getting them back down – it has been 4 weeks today since my last Avonex injection.  I know my Dr. will want to put me on something else, but I am scared and am unfamiliar with LDN.  What is it? Do ya’ll recommend Copaxone, Rebif, Betaseron? This is confusing.

To top it off my precious 15 year probably has Chrohns disease. We will know after the colonoscopy this week – help.

gagirl

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Posted 01:39PM (EDT) on 2007-08-15 by Site Presencegagirl7

earthling's Profile
Hi gagirl – here’s a summary of Low dose Naltrexone (LDN) which hopefully is helpful. User experiences are typically very positive, but everyone is waiting for clinical studies to be conducted.

Oh – be sure to ask your doctor about the newly reapproved option for RRMS – Tysabri (Natalizumab). It involves a once a month infusion – a lot more user friendly than the weekly shots.

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Posted 02:00PM (EDT) on 2007-08-15 by Site Presenceearthling

gagirl7's Profile
Thanks – are the Drs. certain about the effectivemess of Tysabri? I wonder if I cannot tolerate Avonex would I tolerate that or LDN?

Has anyone had particular luck with diet, probiotics, etc? My chiro and various things I have read make me a believer that the digestive tract is a huge part to this disease and other auto-immune…

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Posted 03:30PM (EDT) on 2007-08-15 by Site Presencegagirl7

earthling's Profile
Hi – however promising LDN sound from patient reports, it has to be considered as an experimental treatment for MS at present. The same would have to be said for diet, probiotics – especially if taken instead of treatments which have been proven to slow the progression of MS.

According to our neurologist expert Olajide Williams MD, the evidence for Tysabri seems to be even better than for Avonex, Copaxone, Rebif and Betaseron. “Natalizumab was recently approved through a registration program after a roller-coaster arrival onto the MS scene. It is given as an intravenous infusion every month and was shown to reduce relapses and slow disease progression in individuals with RRMS. Comparative clinical and MRI efficacies of all DMDs versus their placebo arms suggest that Natalizumab is the most superior of the bunch, although the occurrence of a deadly disease associated with its use called Progressive Multi-focal Leukoencephalopathy (PML) has tempered the initial buzz surrounding this drug.”

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Posted 06:44PM (EDT) on 2007-08-15 by Site Presenceearthling

anonymous
I am just responding to gagirl’s question on the probiotics.  I’m not a doctor, but I have been a medical transcriptionist for almost 8 years and spent a great deal of time recently leading a GI transcription team.  Anyway, I type so many reports; therefore, I hear all of the diagnoses and treatments.  The probiotics are good for the digestive system and very highly recommended by GI physicians in patients with digestive problems.  The best thing is, they are available over-the-counter and are not too expensive.  The probiotics that I see prescribed most frequently are Floragen and Flora-Q.  Also, you could try adding an active-culture yogurt to your diet, such as Dannon Activia.  The active-culture yogurts contain acidophlius and bifidum and are considered probiotics also.  You could treat yourself with the same ingredients of a pill just by eating a snack.  Hope this info helps.

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Posted 12:16PM (EDT) on 2007-08-18 by Anonymous

speedy57's Profile
I am 50 year old female diagnosed in 2003 with MS. I was on Rebif for from 12-2003 untill 8-2006. The side affects were so painful. There were days I could hardly walk from the pain in my legs, my whole body as far as that goes. My liver functions shot way and I did not feel good most of the time. My Neuro switched me to Copaxone. It seemed to do ok for the first year and then the same kind of side effects started a few months ago. I’m not familiar with Naltrexone,but plan on doing some research on it. I have gone off all medications for now.Any feedback on Naturapathic medicine. Would be very interested in hearing some opinions. I’m glad I stumbled on to this site!

0 Ratings & reviews

Posted 09:53PM (EDT) on 2007-09-09 by Site Presencespeedy57

earthling's Profile
Hi Speedy57 – you might want to check out the Best Bet / Peleolithinc diet (click on the name to read some user ratings).

Low dose Naltrexone is not a naturopathic treatment, but very few people report any side effects at all and the anecdotal stories are quite positive.

That said, the only treatments which have yet to be clinically proven to slow the progress of RRMS are the 3 interferons, Copaxone and now Tysabri. Have you talked with your doctor about Tysabri? It’s only a 1 x month infusion – which would theoretically make it much more user-friendly than the others.

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Posted 12:04AM (EDT) on 2007-09-10 by Site Presenceearthling Updated 12:04AM (EDT) on 2007-09-10 (view previous version)

lesllit's Profile
My mother-in-law was recently hospitalized.  The doctors have not idea what could be wrong.  Her symptoms are as follows;  Saturday while driveing her foot went numb, so she used the cruise control.  Sunday while sitting in her chair doing a crossword puzzle, her right hand started to shake.  At noon all of the sudden her right arm and leg start to go spastic, just all over the place.  It was wearing her out to the point she was swetting.  She is 81 yrs old and has had multiple back problems.  No other real health issues.  The doctors first thought it could be MS, then they put her on meds for seizures, then the think it could be a atypical stroke.  The only thing that gives her any relief is valium.  Can you help us figure out what we should do next, or where we should look for help?  Please contact me at lestimbland@yahoo.com if you have any answers.

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Posted 02:57PM (EDT) on 2007-09-11 by Site Presencelesllit

okae's Profile
2 days ago I was still on Betaseron for my MS, flu-like symptoms constantly and the tired feeling that went with it. I started LDN 2 nights ago, quit the injections and prayed. Today I feel stronger, my flu symptoms are almost gone, though I expect it to take a while to get all the remnants of the Betaseron to get out of my system. I slept through the night without having to go the bathroom, and only have slight tingling in my fingertips.

I waited too long to start treating this, so I cannot walk without the aid of a cane or walker. I truly wish I had known of LDN earlier. The Betaseron did not help, I got worse after starting  it, and of course, my Neurologist claims to have never heard of LDN. Fortunately, my GP was open minded and readily acceepted my plea for the LDN.

I realise I have only just started this treatment, but will try to update this regularly so people can know how it goes from day 1.

My best to all LDN users.

Carye

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Posted 02:01PM (EDT) on 2007-09-28 by Site Presenceokae

traveltoo's Profile
My wife has changed over to LDN about 6 months ago and is doing great on it. She was doing rebif injections 3 times a week and stopped them. We went to Africa and she trooped through most of our safaris with little weariness. Her spirits are up and her sleeping habits are better. I feel that it is something to check into.

Chins Up, Ray

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Posted 08:13PM (EST) on 2007-12-04 by Site Presencetraveltoo

child of God's Profile
I am a female 31 yrs old. I was dxed with MS in Feb 2002. I didnt take any of the ABC drugs. I went from Dec.2001 to March 2004 with no attacks. During my attack I started LDN I dont remember the dose strength. I gradually increased the strength to 4.5 over a period of a month.

I fully recovered from the two attacks I had. My most recent MRI showed no new lessions and the old ones were shrinking. I would definetly tell anyone to try LDN, it is worth a try!!

0 Ratings & reviews

Posted 03:44PM (EST) on 2008-01-01 by Site Presencechild of God

nevetland's Profile
can anyone help me???  i have chronic pain from my spine.  i have been taking 80mg of oxycotin per day plus 60mg of fast acting roxycotin a day.  6 weeks ago my new neurologist/pain dr. put me on a very low dose of naltrexone 1/10th of one mg.  after 3 weeks i started having a severe reaction.  whenever i take oxycotin i get shingle type nerve pain all over, sick to my stomach, agitated, and general malaise.  the dr. told me to stop the naltrexone which i did.  however it has been over 3 weeks since i stopped and the naltrexone is still affecting me greatly whenever i take oxy.  i am only able to take a very small dose of the fast acting roxycotin everyday.  if i take any more even close to what i need the side effects from the naltrexone are unbearable.  my pain has increased greatly.  the dr. simply says “we are in unchartered waters”.  will this ever stop.  do not know where to turn.  please help anyway you can.  thank you.  nevetland@sbcglobal.net

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Posted 05:10PM (EST) on 2008-01-22 by Site Presencenevetland

nevetland's Profile
can anyone help me????  i have serious chronic pain from my spine.  i normally take 2 40mg of oxycotin and 30mg of fast acting roxycotin every day.   my new neurologist/pain dr. put me on 1/10 of 1 mg of naltrexone.  after 3 weeks i started having a severe reaction every time i took oxycotin.  i get nerve shingle type pains, sick to my stomach, agitated, and general malaise.  the dr. told me to stop taking the naltrexone which i did over 3 weeks ago but the symptoms persist every time i take oxycotin.  i can only take a very little oxy because the side effects from the naltrexone are so bad.  so my normal pain is much worse on top of the naltrexone reaction.  it just won’t stop affecting me.  my dr. says i am in unchartered waters and she does not know what to do.  can anyone offer me any advice or insight.  i need help bad.  thanks  nevetland@sbcglobal.net

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Posted 05:18PM (EST) on 2008-01-22 by Site Presencenevetland

earthling's Profile
Hi – it seems strange that such a small, small dose of naltrexone could have this effect weeks later. According to Wikipedia, the half-life of Naltexone is only about 4 hours. Have you  tried other narcotic pain meds and had the same reaction, or is it only the Oxycontin?

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Posted 05:38PM (EST) on 2008-01-22 by Site Presenceearthling

HiQ's Profile
me being a patient of MS for the last 7 years after taking steriods. My Doc took me on Copaxone its good drug but very slow and could not take control of the coming relapse I had after giving birth to a normal baby. So after an year of struggling was taken on to Cymotherapy 10 days ACTH and cyclo for 10 days side by side with in 2004. after it was taken off the market TYSABRI I got pregnant with anohter baby. After I delivered the baby was put back on TYSABRI. As it s availabity is very limited in the world only in USA and Europe. took me to a another relapse in 2007.  now again jsut got the therapy of Cyclo for 10 days side by the side ACTH than continue iwth Cyclo every month foe 6 months.  now am in a very stable condition.nothing needed. So i prefer somethng to stablize my MS ot the symptoms. So please if any one of the pateints tried TYSABRi do revert.

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Posted 01:41PM (EDT) on 2008-04-11 by Site PresenceHiQ

anonymous
I have been on LDN 3 mg for one year plus and two MRI’s indicated no new activity (lesions).  Better results than when I was injecting Avonex!  LDN 4.5 mg I could not tolerate due to the spasticity in my left leg.  If you are not experiencing spasticity, go with LDN 4.5 mg … nothing to lose but a lot to gain!  I’ve considered Tysabri and have discussed it with my Neurologist. He suggested that I stay with my current med (LDN)  and wait another six months for the Tysabri results. Keep smiling!

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Posted 08:23PM (EDT) on 2008-04-29 by Anonymous

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August 9, 2008 - Posted by | Uncategorized

1 Comment »

  1. I have been taking LDN for 3.5 years now. For all but the first month, I have used the liquid method of self-titration of a 50 mg pill to take 4.5 mg/night. Prior to LDN I did Copaxone for a year. before C and LDN I had MRI showing major problems. The MRI after being on LDN for a while showed substantial improvement.

    LDN is a miracle to me.

    Comment by Nathan Raeburn Kennard | December 17, 2008 | Reply


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