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Thread: My Low Dose Naltrexone Journey (so far)

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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.

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