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Thread: My Low Dose Naltrexone Journey (so far)

  1. #1
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    Default My Low Dose Naltrexone Journey (so far)

    Background

    Subtype 1 rosacea, which started dramatically two years ago, with a series of major, painful flushes that could last for about 12 hours.

    As far as I can tell, My facial flushing is triggered by:
    - ambient temps above 18C
    - coming into even slightly warm places from the cold
    - body heat due to excercise, warm clothing etc
    - stress
    - sometimes also intense mental concentration
    - alcohol

    Also, My nose flushes and swells up when I eat warm food or drink warm drinks.

    I also get face pain (tingling and burning) mostly on one side. Sometimes it happens for a day or two after a bad flush, sometimes it seems to happen for no reason at all.

    I have permanently rosy cheeks and did have lots of visible caps, but they have been mostly taken out by 9 IPLs over the last 18 months. This also reduced the severity and duration of my flushes by quite a lot. Prior to IPLs I would flush several times every day and often for no apparent reason whatsoever.

    I don’t get Papules and pustules like so many suffer with, but I do tend to wake up most mornings with an occasional tiny red spot or three (not sure if that constitutes P&Ps), they tend to either completely disappear or reduce within a few hours, although there is often a flat red mark that can remain for several days - my wee theory about that is that the spot healing takes longer because I get no exposure to sunlight these days.

    My LDN story so far

    I started just over a month ago... on Friday the 13th April

    When I contacted the LDN Trust in the UK, to enquire about LDN and rosacea, they said that “we have a few people with rosacea take it and they say that it has helped”.

    Only some docs prescribe LDN. The trust gave me details of how to arrange a phone consultation. I had to first provide proof of my diagnosis (either a doc or derm letter or a prescription was sufficient). The doc said she wasn’t sure if LDN would help, but it was worth a try.i think she especially thought that because I’ve tioned I also have very slight raynauds syndrome and very occasional eczema, both of which are know to be helped by LDN.

    My first 3 month supply of LDN arrived in less than a week after the consultation.

    Cost
    I’m in Scotland, where Some NHS GPS will write a (free) prescription for LDN, but I’m a bit fed up with going to my GP just now, so I decided to just pay till I hopefully get results, then I would go to my doc and see if she would prescribe.

    The initial phone consultation lasted about 20 mins (they have no time limit and like to take as long as they need - cost £35

    Cost of LDN only approx £20 per month!

    Dose
    Im following instructions to the letter... for the first two weeks I took 1.5 mg each night and I have been slowly building up the dose by 0.5 each week. This week I’m up to 3 mg and I go up to 3.5 in 2 days.. I stop increasing the dose when I get to 4.5 mg, after which I have another consultation to review how things are going and decide what to do next.

    Side effects
    it seems that some have them for the first week or so and some don’t. The internet is full of side effect stories, but I tend to assume that tends not to be representative, as people are more likely to post frequently on forums etc when they’re having trouble and need support. The most common side effects seems to be very vivid dreams and/or poor sleep for the first week or two.

    As far as I can tell, I’ve had no side effects so far... I didn’t sleep too well for the first three nights, but to be honest I think that was me and not the LDN - I think I couldn’t sleep because I was so busy anticipating side effects! I was almost disappointed I didn’t get vivid dreams..

    Outcome so far
    - I am sleeping better than I have for many years
    - I have had no face pain whatsoever since day one of taking LDN. This is big for me.
    - I’ve had no eczema
    - also no raynauds... (although that may be down to warmer weather)
    - I need more time to know if it has - or will - help reduce flushing. Perhaps if the face pain / sensitivity goes the tendency to flush may reduce through time. I also think that I will need to continue to zap the caps and redness a bit more, in order to get rid of the excess infrastructure that makes flushing so easy. I can’t expect the LDN to do that.

    Caveat
    I also started taking propranolol 10 mg 3 times daily about a week after I started LDN. Not ideal from the POV of muddying the LDN trial, but I did it mainly because I finally got an appt with an NHS derm after waiting 4 months and I didn’t want to mess up the relationship on day 1 by saying I wasn’t going to take her recommendation because I was currently trying something else. I also really wanted all the help I could get as I was to be away on a business trip for a few weeks and would be in places that are warmer than I would wish.

    I will say that I don’t think the propranolol is helping - at least not at that dose. It might if I increased it, but I won’t do that whilst I’m trying the LDN and I may stop taking it in a month or so, to see if there’s any change.

    I’ll update here in a week or so...

    LDN info

    www.lowdosenaltrexone.org

    There are lots of good videos about LDN on YouTube but I have to say there’s nothing out there about LDN and rosacea, as far as I can see....
    Last edited by Fiugs; 16th May 2018 at 06:51 PM.

  2. #2
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Fiugs View Post
    Background

    Subtype 1 rosacea, which started dramatically two years ago, with a series of major, painful flushes that could last for about 12 hours.

    As far as I can tell, My facial flushing is triggered by:
    - ambient temps above 18C
    - coming into even slightly warm places from the cold
    - body heat due to excercise, warm clothing etc
    - stress
    - sometimes also intense mental concentration
    - alcohol

    Also, My nose flushes and swells up when I eat warm food or drink warm drinks.

    I also get face pain (tingling and burning) mostly on one side. Sometimes it happens for a day or two after a bad flush, sometimes it seems to happen for no reason at all.

    I have permanently rosy cheeks and did have lots of visible caps, but they have been mostly taken out by 9 IPLs over the last 18 months. This also reduced the severity and duration of my flushes by quite a lot. Prior to IPLs I would flush several times every day and often for no apparent reason whatsoever.

    I donít get Papules and pustules like so many suffer with, but I do tend to wake up most mornings with an occasional tiny red spot or three (not sure if that constitutes P&Ps), they tend to either completely disappear or reduce within a few hours, although there is often a flat red mark that can remain for several days - my wee theory about that is that the spot healing takes longer because I get no exposure to sunlight these days.

    My LDN story so far

    I started just over a month ago... on Friday the 13th April

    When I contacted the LDN Trust in the UK, to enquire about LDN and rosacea, they said that ďwe have a few people with rosacea take it and they say that it has helpedĒ.

    Only some docs prescribe LDN. The trust gave me details of how to arrange a phone consultation. I had to first provide proof of my diagnosis (either a doc or derm letter or a prescription was sufficient). The doc said she wasnít sure if LDN would help, but it was worth a try.i think she especially thought that because Iíve tioned I also have very slight raynauds syndrome and very occasional eczema, both of which are know to be helped by LDN.

    My first 3 month supply of LDN arrived in less than a week after the consultation.

    Cost
    Iím in Scotland, where Some NHS GPS will write a (free) prescription for LDN, but Iím a bit fed up with going to my GP just now, so I decided to just pay till I hopefully get results, then I would go to my doc and see if she would prescribe.

    The initial phone consultation lasted about 20 mins (they have no time limit and like to take as long as they need - cost £35

    Cost of LDN only approx £20 per month!

    Dose
    Im following instructions to the letter... for the first two weeks I took 1.5 mg each night and I have been slowly building up the dose by 0.5 each week. This week Iím up to 3 mg and I go up to 3.5 in 2 days.. I stop increasing the dose when I get to 4.5 mg, after which I have another consultation to review how things are going and decide what to do next.

    Side effects
    it seems that some have them for the first week or so and some donít. The internet is full of side effect stories, but I tend to assume that tends not to be representative, as people are more likely to post frequently on forums etc when theyíre having trouble and need support. The most common side effects seems to be very vivid dreams and/or poor sleep for the first week or two.

    As far as I can tell, Iíve had no side effects so far... I didnít sleep too well for the first three nights, but to be honest I think that was me and not the LDN - I think I couldnít sleep because I was so busy anticipating side effects! I was almost disappointed I didnít get vivid dreams..

    Outcome so far
    - I am sleeping better than I have for many years
    - I have had no face pain whatsoever since day one of taking LDN. This is big for me.
    - Iíve had no eczema
    - also no raynauds... (although that may be down to warmer weather)
    - I need more time to know if it has - or will - help reduce flushing. Perhaps if the face pain / sensitivity goes the tendency to flush may reduce through time. I also think that I will need to continue to zap the caps and redness a bit more, in order to get rid of the excess infrastructure that makes flushing so easy. I canít expect the LDN to do that.

    Caveat
    I also started taking propranolol 10 mg 3 times daily about a week after I started LDN. Not ideal from the POV of muddying the LDN trial, but I did it mainly because I finally got an appt with an NHS derm after waiting 4 months and I didnít want to mess up the relationship on day 1 by saying I wasnít going to take her recommendation because I was currently trying something else. I also really wanted all the help I could get as I was to be away on a business trip for a few weeks and would be in places that are warmer than I would wish.

    I will say that I donít think the propranolol is helping - at least not at that dose. It might if I increased it, but I wonít do that whilst Iím trying the LDN and I may stop taking it in a month or so, to see if thereís any change.

    Iíll update here in a week or so...

    LDN info

    www.lowdosenaltrexone.org

    There are lots of good videos about LDN on YouTube but I have to say thereís nothing out there about LDN and rosacea, as far as I can see....
    Fiugs - Thanks for sharing and your detailed post I'm very interested in trying this potentially for myself One of my dr's said I could try it later. I'll be checking for any updates! best wishes

  3. #3
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    Default LDN Experience

    Hi Fiugs-

    Thanks for sharing your LDN notes. I started on 1mg of LDN in January, and upped it to 2mg in February. Iím contemplating going to 3mg, though my doc says lower is better despite the fact that LDN doses can go as high as 4.5 mg. I need to inquire further about this.

    LDN helps your immune system find better balance, without stimulating it. I do believe there is an immune component to this condition for some rosaceans.

    My observation so far is that LDN has helped with facial swelling. The only side effects I had were bizarre dreams for the first few weeks. Additionally, a few months after I got rosacea, I became very intolerant to chemical and fragrant smells. No idea if itís related to rosacea, but LDN has helped with this as well.

    This drug is very old and very cheap, and has practically zero side effects aside from weird dreams. Itís worth trying if you can get a doctor to prescribe it. It apparently has really helped some people with a myriad of autoimmune conditions.

    Keep us posted and good luck!!

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    Quote Originally Posted by sg321 View Post
    Hi Fiugs-

    Thanks for sharing your LDN notes. I started on 1mg of LDN in January, and upped it to 2mg in February. I’m contemplating going to 3mg, though my doc says lower is better despite the fact that LDN doses can go as high as 4.5 mg. I need to inquire further about this.

    LDN helps your immune system find better balance, without stimulating it. I do believe there is an immune component to this condition for some rosaceans.

    My observation so far is that LDN has helped with facial swelling. The only side effects I had were bizarre dreams for the first few weeks. Additionally, a few months after I got rosacea, I became very intolerant to chemical and fragrant smells. No idea if it’s related to rosacea, but LDN has helped with this as well.

    This drug is very old and very cheap, and has practically zero side effects aside from weird dreams. It’s worth trying if you can get a doctor to prescribe it. It apparently has really helped some people with a myriad of autoimmune conditions.

    Keep us posted and good luck!!
    I also seem to have developed an intolerance to chemical smells, in my case about a year into getting rosacea - How interesting!

    Yes, I’d heard that some MS sufferers work their way up to 4.5 mg daily, but then find they’re better to drop to 3mg. I’m hoping that might be the case for me too, as there are 3mg capsules available - much more convenient than the current liquid form in a syringe feeder!

    I think I forgot to mention in my original post that my nose flushing and swelling when I put any warm food or drink in my mouth has stopped. I don’t know if that’s the LDN or the propranolol tho... maybe it is the LDN, as the propranolol has certainly not helped in any other way at the current dose.

    I don’t get swelling elsewhere so I can’t say... great though that it’s helped for you with that!

    I kind of hope my rosacea has an autoimmune component, as that seems to be what LDN is best at helping with. I’m pretty sure there’s an element of chronic stress in my personal etiology and, as LDN is also known to help with that, I see that as another reason to give it a try.. I’ve certainly got way more stressed since getting rosacea.

    Also on the auto immune front, my ANA blood test showed weak positive... so not enough to qualify to see a rheumatologist, apparently, but certainly indicating that my immune system is up to mild shenanigans.

    Did you get any face pain/tingling/burning? And if so, did LDN help with that?

    It would be great to keep each other updated here from time to time... and maybe some others might give LDN a try too.

    By the way.... I did also hear somewhere that some people get almost instant results with LDN whereas others take several months, so I’m going to give it a good long shot.
    Last edited by Fiugs; 17th May 2018 at 09:38 AM.

  5. #5
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    I hope it continues to go well for you 2. Out of curiosity, did either of you try plaquenil (or another antimalarial)? And how it might compare ... I don't respond much to anti-inflammatories, NSAID's, or plaquenil (except with swelling, maybe) so I wonder how much benefit I could get from LDN perhaps. Still, it seems low-risk, potential high benefit - just wondering.

    Thanks!

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    Yes, I do get some facial discomfort...stinging, burning, tingling, etc. This can happen even if Iím not flaring. It is one thing I have not been able to correlate with triggers. The discomfort is somewhat constant I guess. Not sure if LDN has helped this, maybe a little. My integrative medicine doc has suggested Gabapentin for the facial discomfort, however I havenít tried it because 1.) I read on this forum it made someone worse, 2.) The discomfort isnít Ďthat badí but irs still annoying. My pain threshold is pretty high and 3.);My priority is to get the pink/red to go away.

    Interesting that your LDN is in liquid form. Mine is in capsules...

    As for the anti-malarial drugs, they are next on my list to try. Iíve read that the anti-malarials have helped some, but itís very unclear to me what symptoms the drug treats. I wonder if they are more for those with demodex issues or if the people really had lupus and not rosacea? Do these drugs help those with redness/flushing?

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    Quote Originally Posted by sg321 View Post
    As for the anti-malarial drugs, they are next on my list to try. Iíve read that the anti-malarials have helped some, but itís very unclear to me what symptoms the drug treats. I wonder if they are more for those with demodex issues or if the people really had lupus and not rosacea? Do these drugs help those with redness/flushing?
    It's very hit or miss. The good thing though is I literally have no side effects from plaquenil (just have to get eye checks), so it's a low risk / high potential reward. Yes it can help a lot with flushing / redness, independent of lupus / demodex. Definitely worth a try imo

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    Hi Lizzy,

    What are you currently taking and what is proving beneficial?

    Next on my list to ask the doc are Effexor, Clonidine, and Plaquenil. My biggest issues are redness + facial discomfort, and flushing related to heat/emotions. Iím not sure what to trial next.

    Thanks!

  9. #9
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    Quote Originally Posted by sg321 View Post
    Hi Lizzy,

    What are you currently taking and what is proving beneficial?

    Next on my list to ask the doc are Effexor, Clonidine, and Plaquenil. My biggest issues are redness + facial discomfort, and flushing related to heat/emotions. Iím not sure what to trial next.

    Thanks!
    Hi sg -

    I'm currently taking :

    effexor 112.5 mg
    plaquenil
    mirtazapine 22.5 mg at night
    amlodipine 0.625 x2 / day
    botox every 3 months

    The plaquenil I started ~1 yr ago, and I don't think I'm having any success from that, but waiting to see the prescribing doc before I get off.

    I used to have lots of flushing whenever I talked to anyone -- this is so much better. I think the clonidine + high effexor dose (225 mg) was contributing. It is so much better after I tapered off the clonidine and lowered my effexor to an SSRI dose (instead of SNRI). I'm looking to swap effexor for lexapro or zoloft though -- I have a hunch that my sympathetic nervous system is on overdrive, and don't need any stimulating effects from norepinephrine if that makes sense.

    I noticed a benefit from adding mirtazapine to the effexor. Esp. at night lying down and such, but also generally.

    Amlodipine is a CCB as I mentioned somewhere else and I find a super low dose helps a lot with vasospasm + nerve pain for me.

    The botox helps make my face a little bit cooler.

    Next week I'm trying a stellate ganglion block. I am very hopeful that this could also benefit me.

    If I were you, I'd definitely add plaquenil (I don't see how this could hurt you?) and an SSRI or SNRI if you aren't already on one. There's a chance ppl get worse from the serotonin but I think this is not too likely and if that happens ppl still get luck it seems with mirtazapine.

    For the nerve pain -- since you said you wanted to avoid gabapentin etc -- I would try alpha lipoic acid if you find you still need it after that. I noticed a positive difference in a couple weeks. However it is a bit of a dilator so be cautious. I had to stop due to odd side effects (insomnia + hair loss) but I still think it might be worth a try? I found lyrica to be much better than gabapentin in terms of side effects and benefits, so there's that possibly too for nerve pain. I went off lyrica completely because the amlodipine for me is so much more effective for whatever reason.

    HTH!

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    Very helpful! Thanks, Lizzy.

    Do let us know how the Stellate Ganglion Block goes. After doing some googling, Iím thoroughly intrigued. Seems like this could help with pain and flushing?? Not to mention it appears to have fewer side effects than systemic meds.

    Please keep us posted!!! Good luck.

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