Page 2 of 53 FirstFirst 12341252 ... LastLast
Results 11 to 20 of 522

Thread: My Low Dose Naltrexone Journey (so far)

  1. #11
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Default

    Wow... most of the meds you’re mentioning here are unknown to me.. I Haven’t tried any of them except clonidine, which, to be honest, I probably didn’t give a fair trial - I may give it another go in a while if I feel the need.

    I must say, Sg321, your symptoms seem very similar to mine. The (apparently) triggerless face pain has been horrible. I would always get it for a day or two after a sizeable flush (which I’ll define as one that lasts more than an hour) but then, like you have said, often my face would hurt for anything up to 10 hours even if I haven’t flushed... then it would stop just as suddenly. I tried painkillers and they didn’t stop it at all.

    As far as I can see there can only be two possible reasons for my face pain having been non existent for the last five weeks. One is the LDN... the other is that I had another IPL session (my 9th) at around the same time as I started the LDN.... My ipl recovery, which is usually tough for about 3 weeks, was really easy this time as well, I have to say. Should I put that down to the LDN? Who knows... for certain it seems that LDN is known to be helpful not only for auto immune and inflammatory conditions but also for neuropathy, so I’m sure going to keep,on taking it for a decent amount of time.

    ...and of course I’ll report back here with any meaningful news.

    I begin week 6 tomorrow, when I’ll move up to 4mg daily...almost the max dose. After that I’ll arrange a follow up consultation, which will be interesting.

    OH.. and the international LDN conference is taking place in Scotland this year. It’s in July. I have a ticket, so I’ll see what I can find out there... given that so much of the focus with LDN is on conditions that are considered to be way more serious than rosacea , it may be that the presenters don’t want to waste their time on rosacea questions (a bit like most docs and derms generally!j but I’ll sure give it a try!
    Last edited by Fiugs; 26th May 2018 at 08:32 AM.

  2. #12
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Default Wee update (7 weeks into LDN)

    I’m now 7 weeks into taking LDN. I have been slowly increasing the dose, as per instructions (see my opening post) and three days ago I moved to the full dose of 4.5 mg nightly.

    I had started taking 10mg propranolol 3 times daily around the same time as I started LDN. I stopped taking that a week ago, so that I could get a sense of which of the two things was helping my symptoms. Since stopping propranolol, I have had no increase/return of symptoms, so, so far it looks like it must be the LDN that’s been helping and not the propranolol, which is what I suspected was the case.

    IMPROVEMENTS
    My initial post was 1 month into LDN. At that stage I reported a complete lack of face pain.. you know, that weird, inexplicable neuropathy that some of us seem to get. That remains the case. Also, my face feels less sensitive generally; I’m able to tolerate many more sunscreens than before and my face seems to get less red when I’m washing it and touching it to apply skin products. Also - and this is hard to describe, but maybe you'll all get what I mean, my face doesn’t feel the minutest ambient experience the way it used to... for instance, before, I would feel the surface of my face more, simply being touched by the extra breeze due to walking along a corridor! Im also no longer feeling moderate rises of temperature on my facial skin anymore, when I go from one room to another.

    I’ve had virtually zero ear flushes (they were always random - and horrible!) and am now able to tolerate warm food and drinks without getting nose-swelling type flushes that could last for over an hour afterwards. I had thought this was due to the propranolol, but so far these symptoms haven’t returned since I stopped taking it. I’ll let you know if that changes down the line.

    So, all in all, I would say it feels like my skin barrier is improving and - and, I assume this is connected to the skin barrier improvement - something positive is happening on the neuropathic side of things.

    I remain free of any of the slight raynauds symptoms and eczema, which, along with the above improvements, also happened pretty much on day one of taking LDN.

    The weather has been warm here (by Scottish standards!) with temps consistently in the mid 20s centigrade. This will be low summer temps for many of you, but, given that my face has been unable to tolerate temps over 18/19 C without starting to flush, I’ve been doing well. I do get more rosy in the heat (because We Scots are just not used to it!) but I’m coping.

    Oh... and I’m sleeping better than I have been for years!

    Having said that, general facial flushing due to sudden increases in temperature is my remaining issue. But, once again, as I said in my first post, I can’t expect LDN to reduce the vascular growth I’ve been accumulating in the past 2 years.

    SIDE EFFECTS
    For me, there have been none to speak of... although in the past 10 days, basically since taking 4, and now 4.5mg LDN daily, I have been getting some quite vivid and memorable dreams... mostly about Merlin (!) who knew, for instance, that he was also David Bowie! Can’t say I mind the dreams at all!

    MY RANDOM, CREATIVE THEORY
    Interestingly,I did read somewhere that little or no apparent dreaming is one of the by-products of immune deficiency... and increased and vivid dreams is indicative of an improvement in this respect. I don’t know if that’s true, but I certainly have often thought - for quite a few years - that I didn’t remember my dreams like I used to, say, 10 years ago... it was around that time that my life, due to work situations, became highly stressful. Rosacea kicked in 2 years ago... who knows, maybe my years of stress and associated chronic lack of sleep weakened my immune system and contributed to my rosacea kicking off 2 years ago.

    SUMMING UP...
    I think that low dose naltrexone IS helping with my subtype 1 rosacea symptoms of highly sensitive skin and face pain. It has also, I think, helped with nose and ear flushes. I think (hope) that, the more time I get under my belt without these symptoms, the calmer my face will become. That, coupled with ongoing IPLs to take out some of the remaining excess vasculature, gives me real hope of further reducing my great susceptibility to flushing and starting to feel more normal again.

    WHATS NEXT?
    I have around a months supply of LDN left and will need another telephone consultation with the prescribing doctor in order to get more after that. I will of course bring my experiences so far to that meeting and I assume -hope! -that they will qualify for another prescription. If she offers any invaluable information /observations I will of course post them here.

    OH... AND...
    In my initial post I mentioned that I couldn’t find anything on the internet connecting LDN with rosacea improvements. Since then, I did find this one post on mumsnet. I’m pasting it here, FYI:
    I have rosacea too, it appeared in my sixties fgs!
    I'm hypothyroid and after doing some research
    on LDN (low dose naltrexone) I bought some via
    private prescription and found it cleared my rosacea
    up.
    After a few months on LDN I stopped taking it - it's quite
    expensive and it didn't seem to be making any difference
    to my hypothyroidism. A few weeks/months later back came
    the rosacea so I'm going back on the LDN -
    bloody rosacea. A hint of sunshine and I'm inflicted with sore
    acne type pustules, not a good look.
    Interesting that this person says it’s expensive. I guess it depends on the pharmacy that compounds it, so it may be worth shopping around. I don’t personally consider my cost of £20 per month a problem. That’s a compounding pharmacy that specialises in LDN in Glasgow (they supply to the entire uk). And of course I also have the possibility down the line of getting an NHS prescription, which is free here in Scotland, if my GP is willing to play ball, which she may be if I bring my positive results to her.

    Sg321 how are you getting on with LDN so far? I think if a few more of us try this it would be helpful.

    Sorry this update is so long folks. But I hope it’s all been useful,

    Much love,
    Fiona
    Last edited by Fiugs; 3rd June 2018 at 10:36 AM. Reason: To apologise for the length!

  3. #13
    Member
    Join Date
    Nov 2016
    Posts
    69
    Country: UK

    Default

    Thanks for sharing your experience. What I find interesting is that low dose Naltrexone, is also used in SIBO treatment (which can also cause Rosacea) it is used to help stimulate the migrating motor complex of the intestines which can be impaired with Small intestinal bacteria overgrowth (SIBO). I know this may seem a little off topic, I just find it interesting.

  4. #14
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Default Not off topic at all in my view

    Quote Originally Posted by Dan3dwards View Post
    Thanks for sharing your experience. What I find interesting is that low dose Naltrexone, is also used in SIBO treatment (which can also cause Rosacea) it is used to help stimulate the migrating motor complex of the intestines which can be impaired with Small intestinal bacteria overgrowth (SIBO). I know this may seem a little off topic, I just find it interesting.
    Indeed.. and I forgot to mention above that my intestinal motility is mightily improved by LDN. I have tended towards constipation for many years, ďgoingĒ, on average, two times a week. Asking my GP for a SIBO test would elicit quite a reaction, I think... Iím pretty sure sheís sick of me asking for tests for this and that, to see if itís behind my rosacea. Thatís one of the downsides of free health care, Drs are more budget conscious.. especially if they think their patient is over reacting, or a hypochondriac, which I ssuspect some docs (certainly mine) think about rosacea sufferers. I tend to assume (perhaps wrongly) that docs in the US will do almost anything for their patients if theyíre paying for it. Of course there would be a downside to that too.

    Do you know if the SIBO test is expensive or if it can be purchased online and done at home?

    Dr Leonard Bernstein, who, you probably know, treats SIBO induced rosacea as one of his specialities, is one of the presenters at the LDN conference in Glasgow next month... Heís one of the reasons I am going to attend. I would be interested though, if he associates SIBO predominantly with subtype 2 rosacea. This may be a fed-up subtype one talking here, but it sometimes seems to me that when people talk excitedly about some sort of rosacea discovery (such as the SIBO connection) it usually seems to turn out that when they use the generic term ďrosaceaĒ, they mean the p&ps of subtype 2... or is it just me that feels that way?

    ...either way, I am delighted to have a more fulfilling bowel life! And I hope to get the chance to ask dr Bernstein if he is referring exclusively to subtype 2 when he says ďrosaceaĒ.

    Thanks for this input, Dan, itís all part of the wider view isnít it?

  5. #15
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Red face Ha!

    ...of course i meant dr Leonard WEINSTOCK!

    As far as I know, gastroenterologists tend not to also write world famous musicals... but I may be wrong.

  6. #16
    Member
    Join Date
    Nov 2016
    Posts
    69
    Country: UK

    Default

    Yes, I have heard of Leonard Weinstock. The connection of the potential of Rosacea and sibo seems a lot more accepted in the states. When I first developed Rosacea just under two years ago no doctor I went to accepted the connection. I developed Rosacea, occular rosacea, seb derm and facial psoriasis within two months of food poisoning and was is chronic pain with my gut. I have now discovered I have chronic Sibo, which for me is complicated as I do not have the valve between the small intestine and the large intestine due to surgery for crohns disease. There are a few places you can get private breath testing, the one I have used is this one https://www.ibsclinics.co.uk/diagnos...tests-for-sibo

    As you may have a seen (as I started another thread) I am looking into stem cells as a possible treatment, but that is a different approach altogether.

  7. #17
    Member
    Join Date
    Nov 2016
    Posts
    69
    Country: UK

    Default

    Quote Originally Posted by Dan3dwards View Post
    Yes, I have heard of Leonard Weinstock. The connection of the potential of Rosacea and sibo seems a lot more accepted in the states. When I first developed Rosacea just under two years ago no doctor I went to accepted the connection. I developed Rosacea, occular rosacea, seb derm and facial psoriasis within two months of food poisoning and was is chronic pain with my gut. I have now discovered I have chronic Sibo, which for me is complicated as I do not have the valve between the small intestine and the large intestine due to surgery for crohns disease. There are a few places you can get private breath testing, the one I have used is this one https://www.ibsclinics.co.uk/diagnos...tests-for-sibo

    As you may have a seen (as I started another thread) I am looking into stem cells as a possible treatment, but that is a different approach altogether.
    Oh Sibo test costs around £150 I believe. Thanks again for sharing the your naltrexone experience.

  8. #18
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Default

    Quote Originally Posted by Dan3dwards View Post
    Oh Sibo test costs around £150 I believe. Thanks again for sharing the your naltrexone experience.
    ... and thanks for sharing your SIBO experience and information!

    I donít really have any IBS kind of troubles though....apart from tending towards slow gut motility prior to taking LDN. Would it not be the case that a person with SIBO would be suffering in some more significant way in the digestive department?

  9. #19
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    291
    Country: Scotland

    Default Cross referencing

    Just thought Iíd add this old thread into the mix, so all the LDN info is in one place. There are a few useful tidbits of extra info here although, unfortunately, the thread ends inconclusively, which (as youíll also see in the final post!) I always find frustrating!

    https://rosaceagroup.org/The_Rosacea...ose-Naltrexone

  10. #20
    Senior Member
    Join Date
    May 2017
    Location
    USA
    Posts
    149
    Country: United States

    Default

    Hi Fiugs,

    So happy to hear that your LDN journey is a positive one so far! Iím still on 2mg of LDN, and donít really have any new developments to share since my last post. It definitely helped with swelling, and maybe a bit in the facial discomfort department. I have just been so focused on my pinkness that I think I tend to get oblivious to other symptoms, if that makes sense.

    I just started 37.5mg of Effexor a few weeks ago, which can help with both flushing and nerve pain. When I see my doc at the end of June, Iím going to request increasing the dose of Effexor. Not sure if Iím not getting the total benefits of pain relief because Iím only on 2mg of LDN or if itís just me. The discomfort isnít horrible, but itís still always there. Maybe Iíll go higher on the LDN if the bump in Effexor doesnít prove fruitful.

    Regarding SIBO, I was pretty convinced I had this due to bloating, constipation, rosacea, etc, and got tested last year. Itís about $250. Test came back negative. Apparently diarrhea and vomiting are common SIBO symptoms. Anyway, I got some additional gut tests done that showed severe gut dysfuncton. I started taking glutamine powder, super high dose probiotics, digestive enzymes, betaine HCL and eat paleo and my digestion has improved dramatically. Sadly, Iím still pink, though itís improved slightly over the past few months since stopping a product that was apparently disagreeing with my skin.

    Best wishes for continued success!

Similar Threads

  1. Low Dose Naltrexone..
    By mrsmoof in forum Prescription medications
    Replies: 20
    Last Post: 19th February 2017, 10:32 AM
  2. Low dose Accutane not really doing the business. Give high dose a go?
    By Jimmyb78 in forum Prescription medications
    Replies: 2
    Last Post: 4th October 2013, 03:11 PM
  3. Antibiotics: is low-dose as effective as high dose?
    By TheMediumDog in forum Prescription medications
    Replies: 5
    Last Post: 23rd January 2009, 05:32 AM
  4. OK, I think I need to try low-dose accutane.
    By nbapoker in forum Prescription medications
    Replies: 14
    Last Post: 27th September 2007, 12:04 PM
  5. Dr. Nase -- rosacea, low dose, lower dose .5 for rosacea
    By bettina in forum Prescription medications
    Replies: 2
    Last Post: 1st July 2005, 06:24 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •