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Thread: My Low Dose Naltrexone Journey (so far)

  1. #41
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    Default 5 month update

    Hi all,

    Iíve been on LDN for 5 months now. Roughly the first month was the process of gradually increasing my dose from the start dose of 1.5 mg nightly to the usual top dose for LDN of 4.5.

    All the improvements I have listed previously in this thread remain... the only thing that hasnít really improved is my flush response to warm environments, either internal (rise in my own body heat) or external.. I continue to address that issue with IPL, where progress is very slow, but nevertheless perceptible.

    Just recently I wonder if the LDN is bringing some another improvements .. I do know some things can take time with LDN, so Iím grateful some things happened really quickly... Within the last few weeks Iíve had virtually none of the tiny little single-pore sized red marks and whiteheads that mostly, but not always, are there when I get up in the morning and disappear during the course of the day. Iím a subtype 1, so I donít think any subtype 2s would ever say that these marks qualify as ďproperĒ P&Ps (feel free to correct me if Iím wrong), but they have always been pretty visible because thereís such a deep red inflammation around them. I usually have at least two or three os these wee marks on my face at any given time, but, over the past three or four weeks they have been absent.

    Another possible improvement is that I am able to wear my reading glasses for much longer before I have to take them off because my nose starts to flush and swell a bit, which also hurts. I used to only be able to wear glasses for 5 minutes, more recently Iím able to wear glasses for an hour or more at a time.

    Iím also able to tolerate several brands of sunscreen, whereas until this summer I was only able to bear one brand (noid survival 30j. Now I am back to being able to wear various Elta MD ones as well as La Roche Posay chemical spf 30 and my latest favourite discovery - Hada Labo spf 50 - which I highly recommend!

    So I think the above more recent improvements suggest my skin barrier is improving as my sensitivity is much reduced.

    Only (possible) LDN side effects are continuing vivid dreams, which Iím enjoying very much! I continue to sleep better than I have in over 10 years.

    I am still feeling very positive and optimistic on my LDN journey!

  2. #42
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    Quote Originally Posted by Fiugs View Post
    Hi all,

    Iíve been on LDN for 5 months now. Roughly the first month was the process of gradually increasing my dose from the start dose of 1.5 mg nightly to the usual top dose for LDN of 4.5.

    All the improvements I have listed previously in this thread remain... the only thing that hasnít really improved is my flush response to warm environments, either internal (rise in my own body heat) or external.. I continue to address that issue with IPL, where progress is very slow, but nevertheless perceptible.

    Just recently I wonder if the LDN is bringing some another improvements .. I do know some things can take time with LDN, so Iím grateful some things happened really quickly... Within the last few weeks Iíve had virtually none of the tiny little single-pore sized red marks and whiteheads that mostly, but not always, are there when I get up in the morning and disappear during the course of the day. Iím a subtype 1, so I donít think any subtype 2s would ever say that these marks qualify as ďproperĒ P&Ps (feel free to correct me if Iím wrong), but they have always been pretty visible because thereís such a deep red inflammation around them. I usually have at least two or three os these wee marks on my face at any given time, but, over the past three or four weeks they have been absent.

    Another possible improvement is that I am able to wear my reading glasses for much longer before I have to take them off because my nose starts to flush and swell a bit, which also hurts. I used to only be able to wear glasses for 5 minutes, more recently Iím able to wear glasses for an hour or more at a time.

    Iím also able to tolerate several brands of sunscreen, whereas until this summer I was only able to bear one brand (noid survival 30j. Now I am back to being able to wear various Elta MD ones as well as La Roche Posay chemical spf 30 and my latest favourite discovery - Hada Labo spf 50 - which I highly recommend!

    So I think the above more recent improvements suggest my skin barrier is improving as my sensitivity is much reduced.

    Only (possible) LDN side effects are continuing vivid dreams, which Iím enjoying very much! I continue to sleep better than I have in over 10 years.

    I am still feeling very positive and optimistic on my LDN journey!
    Thank you so much for the update! I was wondering how you were getting on, so good to hear that things are improving!

    J
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  3. #43
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    Default Still doing well

    Quote Originally Posted by Judworth View Post
    Thank you so much for the update! I was wondering how you were getting on, so good to hear that things are improving!

    J
    Hi..

    I have been meaning to update here again as I just passed the six month mark on Oct 13th.

    Things are still good. I cant remember if I already mentioned this particular improvement before, or if I have only noticed it more recently (clearly LDN hasn't improved my memory! :-) But I almost never get ear flushes anymore. I used to get them so easily, often seemingly for no reason, also almost always if I touched any part of either ear. Putting on earrings would always induce a flush on my lobes. Ear flushes are particularly weird to me and, if I was a genuinely interested and engaged Derm, I'm sure they would suggest much to me about the nature of my rosacea subtype, because sometimes very clearly demarcated different parts of my ears would flush.. sometimes just a lobe, sometimes the outer third of one ear or the top portion of an ear, sometimes one whole ear, etc etc. These were not necessary triggered by my touching that part of an ear (anyone else get that?)

    Also, I was incapable of eating a warm meal without getting a nose flush - and my nose would swell up as well. I can now eat a whole plate of warm, carb-laden food and my nose doesn't flush any more.

    I said a while back that for me the acid test would be winter. Well, its not full on winter isn't here yet by any stretch, but a few days have been as low as about 9 - 10 deg C (48-50F). I have been out for walks in those temps and come bac into the house without experiencing a flush. I don't think that would have been the case last year in similar temperature shifts - especially as I have been able to increase my home temp from 17C/62F to 19 C, which sometimes goes up to 20C/68F when there's some solar gain.. no flush. Thats big for me...any temps over 18 have been enough to make me flush before.

    All the previously logged improvements remain.

    How about others here who were trying LDN? I, thinking of Laser_cat sig321 and Dan3dwards? any of you folk still on LDN and if so how's it going?

    Take care
    Fiona

  4. #44
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    Default Fab news!

    Hello Fiona!

    What great news!

    I have a telephone consultation with my GP tomorrow & am praying that she will prescribe the liquid form!

    I had a FULL weekend of facial nerve pain a few months back brought on by stress...................are your eyes affected too?

    I have ocular rosacea and would love to see some improvements there too!

    Although if the intense acid-like pain subsides, then I am sure that my eyes will feel better!

    Thanks so much for the feedback!

    J x
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  5. #45
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    Quote Originally Posted by Judworth View Post
    Hello Fiona!

    What great news!

    I have a telephone consultation with my GP tomorrow & am praying that she will prescribe the liquid form!

    I had a FULL weekend of facial nerve pain a few months back brought on by stress...................are your eyes affected too?

    I have ocular rosacea and would love to see some improvements there too!

    Although if the intense acid-like pain subsides, then I am sure that my eyes will feel better!

    Thanks so much for the feedback!

    J x
    Good luck with your GP.. If she wont prescribe it, see my EDIT TO ADD bit for details of how to get it for only £20 a month. It's fully legit BTW!

    Facial pain was the very first thing that went in my case - it was gone within days and has never been back. I hope the same for you with all my heart. Facial pain is the worst it grinds you down with its unpredictability and never being able to reduce it or know when it will randomly stop again.

    ...and thanks for reminding me... I FORGOT altogether about my eyes... well, my eyeLIDS to be precise. They have been pretty much permanently pink and slightly swollen from around the start of 2017 until sometime late summer this year. That's gone too. I would have forgotten to mention that. Every morning my eyelids - and the space between them and my eyebrows (on the inner side, near my nose) were really swollen, I assume lymphatic fluid not draining properly. Sometimes there was so much swelling that I couldn't open my eyes fully until it went down a bit by late morning. My eyelids are normal again now - no swelling, no redness.

    I would love to think it could help with your eyes. I cant see why it shouldn't one of LDN's specialities seems to be reducing too high levels of inflammatory cytokines in our system. I think that might be one f the reasons it seems to help at least some rosaceans.

    Please keep us posted, Judworth. Fingers crossed!

    EDIT TO ADD - if your GP looks like she might be convinced once she knows more about LDN send her to the UK LDN trust website - www.ldnresearchtrust.org

    There's a Fact sheet there for doctors - https://www.ldnresearchtrust.org/sit...20-%202014.pdf

    and, if she is willing to prescribe but doest know how to get hold of LDN, it can be compounded here - http://dicksonchemist.co.uk/new/ - they will fulfil NHS prescriptions. You Doc may need guidance from them, or maybe from the LDN Trust, as to how much to prescribe etc. Finally, If you end up having to source it yourself, call Dicksons and they will advise you. That's what I did.
    Last edited by Fiugs; 17th October 2018 at 05:12 PM.

  6. #46
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    Quote Originally Posted by Fiugs View Post
    Good luck with your GP.. If she wont prescribe it, see my EDIT TO ADD bit for details of how to get it for only £20 a month. It's fully legit BTW!

    Facial pain was the very first thing that went in my case - it was gone within days and has never been back. I hope the same for you with all my heart. Facial pain is the worst it grinds you down with its unpredictability and never being able to reduce it or know when it will randomly stop again.

    ...and thanks for reminding me... I FORGOT altogether about my eyes... well, my eyeLIDS to be precise. They have been pretty much permanently pink and slightly swollen from around the start of 2017 until sometime late summer this year. That's gone too. I would have forgotten to mention that. Every morning my eyelids - and the space between them and my eyebrows (on the inner side, near my nose) were really swollen, I assume lymphatic fluid not draining properly. Sometimes there was so much swelling that I couldn't open my eyes fully until it went down a bit by late morning. My eyelids are normal again now - no swelling, no redness.

    I would love to think it could help with your eyes. I cant see why it shouldn't one of LDN's specialities seems to be reducing too high levels of inflammatory cytokines in our system. I think that might be one f the reasons it seems to help at least some rosaceans.

    Please keep us posted, Judworth. Fingers crossed!

    EDIT TO ADD - if your GP looks like she might be convinced once she knows more about LDN send her to the UK LDN trust website - www.ldnresearchtrust.org

    There's a Fact sheet there for doctors - https://www.ldnresearchtrust.org/sit...20-%202014.pdf

    and, if she is willing to prescribe but doest know how to get hold of LDN, it can be compounded here - http://dicksonchemist.co.uk/new/ - they will fulfil NHS prescriptions. You Doc may need guidance from them, or maybe from the LDN Trust, as to how much to prescribe etc. Finally, If you end up having to source it yourself, call Dicksons and they will advise you. That's what I did.
    Thank you for your advice and care. I have been on the phone to Dickinson chemist in Glasgow and they have told me exactly what to ask my GP to prescribe, I will get the liquid as I want to start on a very low dose. I also have graves disease, so my condition is certainly auto-immune driven!

    My facial pain feels like someone is throwing acid in my face and striking a match! My eyes are obviously also affected when I have such an intense flair!

    After almost 14 yrs, it grinds you down................I have to believe that there is hope!

    BTW there are very few compounding pharmacies in the UK, I was ringing round today.

    So delighted to read your updates.

    Did your nose go ice cold when you flushed?

    BTW I am going to ask for a Private prescription, that way I can just send it off and not worry about my GP having to find a compounding chemist.

    Jx
    Last edited by Judworth; 17th October 2018 at 05:51 PM.
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  7. #47
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    Fiugs - my ears usually flush starting at the top and working down to the bottom, meaning that botox helps most when it is injected on the edge of the ear at the top (more injections around the edge at the top, a few towards the bottom, but none in the lobe). My lobes don't flush much and I do think your lobe flushing may be partly related to you wearing earrings as you say. However, before I took any anti-flushing medications the lobe did start to swell very slightly but that went back to normal as soon as I started anti-flushing medications. I'm pleased it seems to be helping you with ear flushing, Fiugs, as this is one of the reasons I want to try LDN.

  8. #48
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    Quote Originally Posted by Fiugs View Post
    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.
    Hello again!

    I have had an intolerance to chemical smells for years, mild cleaning products and even on the odd occasion scented candles!

    I think you mentioned how 'active' your face had become (even to a gentle breeze), I always feel that my face is NEVER actually calm, it may appear calm, but there is always some activity going on!

    As I have reached menopause, and with my hyperthyroidism issues, I am sure an auto-immune problem is at play for me.

    I also have Lichen Planus (oral) which LDN could be helpful for too!

    I am hopeful that LDN will help, I do absorb meds VERY well (sometimes too well); I hope to start on 1mg and perhaps increase at 4 weekly intervals.

    I cannot thank you enough for sharing your story and progress.

    J x
    Last edited by Judworth; 18th October 2018 at 10:30 AM.
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  9. #49
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    Default Oh... another improvement!

    Another great thing I forgot to mention... over the last month I have started to sweat again when I get too warm! Lack of sweating has been discussed here and there on this forum and I started to wonder about that myself around autumn last year. At first I thought it might be that I was so assiduous at avoiding my major trigger of any temps about 18 C that I simply wasnít giving my body a chance to get warm enough to sweat, but this summer was very warm by Scottish standards - 32 C at times.. and I didnít sweat. That was not normal. But about a month ago.. it was my birthday actually.. I was dancing in a fairly warm room and I thought, ďwhatís that wetness on my face?Ē It was sweat. I wasnít flushing but my face was sweating! First time Iíve had that experience since rosacea kicked in. Since then Iíve been in a few rooms that feel too warm for me and I have felt wet under my arms and even running down my back. This is new.. this feels right.

    Judworth - oh God, 14 years! Even after only 2 1/2 years I feel so done with this. I feel for you. I also know how hard it is to dare to have hope that something might work.. disappointment can be so crushing! But LDN is best known for handling neuropathic, auto-immune and inflammatory conditions ... so you sure sound like a good candidate.

    If your dr wonít prescribe, call Dicksons again, they can put you in touch with someone who will do a telephone consultation and prescribe for you, if she thinks ldn will help you. Cost of tel consultation - £35. Cost of a 3 month presc- £25. Cost of LDN drops - £20 per month. Prescriber sends the presc direct to Dicksons for you.

    Yep.. there are few compounding pharmacies in the UK, as I discovered when I tried the ketamine/amatriptylene face ointment a while back (it cost me £300 for a months worth and it burnt my face as soon as I put it on.) I think maybe Dicksons only compound LDN... itís their passion. If you search YouTube for Ďthe LDN storyí youíll see mr Dickson himself - he knows his stuff!

    Oh, and Re cold nose .. I did used to get a really cold nose sometimes.. again, for no apparent reason. I donít recall it being cold due to flushing elsewhere though. Itís all so random and chaotic isnít it? For me that suggests neuropathy for some reason... even though I have no idea what Iím talking about!

    Antswantsclear - you too? interesting about the wierdness of ear flushing. Itís bloominí painful,isnít it? It did seem to take a few months of LDN for that to gradually subside, but it definitely has done... I even wear statement earrings these days and no lobe flushing. That, as well as my eye area, are for me two of the major pointers towards the LDN being responsible for much of my improvements, as I havenít used any products or medication on my eye area or ears - and the IPLs have been confined to my face.

    Iíve also dropped all the meds I have tried in the past, none of which seemed to help much anyway... at least not enough for me to want to do something to my heart in order to help my face. So all Iím taking now is LDN and a tablesppon of apple cider vinegar every day.

    All the best

  10. #50
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    Default Sweating!

    Oh I forgot about this little gem!

    In the UK we had a seriously hot Summer, I work from home and work-out from home, I rarely sweat, certainly not on my face, a little on my back, but not as I should!

    I do hope that you are right; I am simply worn out with this disease, you try something, get your hopes up only to find they come crashing down again!

    I am always so grateful for the care and sharing of information on here, I am still waiting for my call!

    Thank you Fiugs x

    J
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

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