Page 57 of 58 FirstFirst ... 74755565758 LastLast
Results 561 to 570 of 576

Thread: My Low Dose Naltrexone Journey (so far)

  1. #561
    Member
    Join Date
    Nov 2018
    Posts
    92

    Default

    Quote Originally Posted by Judworth View Post
    That's a poor response from them; you do have a right to ask for your results.
    How is everyone in this thread getting on?
    Molly

  2. #562
    Senior Member
    Join Date
    Mar 2019
    Posts
    382
    Country: UK

    Default

    Quote Originally Posted by Momof View Post
    How is everyone in this thread getting on?
    Molly
    Iíve dropped to 2mg and now take in the morning.
    Doctors wonít let me have oral ivermectin and both eye and Derm doctors have advised Doxy. So I started on 40mg after much arguing with the doctors who wanted to give me 100mg they offered 50mg but I said no 40mg is all Iím trying. Iíve been on it 3 days not sure if Iíll be able to take if but I guess only time will tell.
    Not really seen any benefits from LDN other than maybe a little more energy.
    Iíve had recurring colds and flu over last few months.

    Howís everyone else doing ?

  3. #563
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    294
    Country: Scotland

    Default

    Hi everyone... Original poster here.

    Sorry Iíve been away for so long, itís been a combination of being busy and also feeling that all my updates were essentially saying the same thing and any questions people were asking, that I could have answered were already answered somewhere back in the earlier posts in this thread.

    Anyway, Iím still doing OK. My initial improvements since starting LDN are still there.. so reduced (but not eradicated) flushing and my nerve pain is no longer there, having disappeared within the first week of using LDN which was, gosh... nearly two years ago!

    My cheeks and nose still flush more easily than ďnormalĒ skin... but nothing like they used to .. more of a blush than a flush mostly. I define ďblushĒ as rosy cheeks that feel slightly warm when touched with oneís inside wrist, but donít hurt at all and pass fairly quickly. The one exception is moments of stress or intense concentration, then I get a very localised flush right at the top of my cheeks that I can feel a wee bit, but I can get rid of such a flush by putting something cold from the fridge on it for a minute.

    So.. all in all... as Iíve said before, my improvements are significant but not as impressive as Judworth, our LDN poster girl! Hi there, dear Judy! Glad youíre still doing so well!

    Iím still taking the full LDN dose of 4.5 mg nightly. I take the capsules for convenience.

    Other news....

    IPL - I continue to have regular ipl sessions as I do feel they are still benefitting me... i have now had a total of 16 IPLs ince my rosacea first appears in early summer of 2016. interestingly, I was starting to think last year that they werenít as effective as they used to be, but the last two sessions (same settings as always) have made a noticeable difference to my remaining redness and I do feel that, for me personally, as my redness goes down and more of the remaining damaged capillaries are taken out, my capacity for flushing continues to reduce. So thatís good.

    TRETINOIN - having found a pub med paper or two that say 0.05% tretinoin, if tolerated, can help erythematotelangiectatic rosacea because it thickens the dermis, I wondered if my improved skin barrier (way, way less sensitivity) might be able to tolerate it, so I decided to give it a try. So last October I subscribed to tret through Dermatica.co.uk. I started very very cautiously, on 0.025% on top of moisturiser only every few days, which gave me no trouble at all, really. After slowly building up to applying that % every night, I moved up to 0.05% tret at the start of this year. Iím now up to every other night with that % and am doing fine. I know that it will likely be several months before I see any change or improvements, but thatís fine. If I feel it helps with whatís left of my rosacea symptoms, Iíll probably start a new thread dedicated to that, as I see that there have been some questions on the form in years past about the possible efficacy of tretinoin for subtype\phenotype 1 rosacea

    CLONIDINE - I also decided to try taking clonidine again. I tried it three years ago but the amount I needed to take then to get even the slightest effect was such that I could barely walk... and I got rebound flushing as each dose wore off. Now Iím taking the standard does twice daily and have no rebound flushing and itís helping with whatís left of my flushing.

    So dear friends, thatís where I am in all of this. I get the sense that LDN is working better for some of you than others.. Iím glad that itís helping some and sorry it doesnít seem to help everyone as much... itís the way of things with this weird condition though isnít it?

    Some of you seem nervous, understandably, when your face acts up after youíve been on LDN for only a little while. I canít say that happened to me at all.. and I must admit I wonder if your faces would have acted up anyway, and itís not to do with the LDN. Having taken LDN every day for two years now, my sense is that itís actually a very gentle drug and even the full dose is so tiny. Personally, I donít think it could make rosacea worse. I know Iím no doctor or LDN expert, but I would dare to encourage you to persevere and give it a chance to get to work on your system long term. When I started LDN I was told by the consulting prescriber that some people only see improvements after about 18 months... so if I were you Iíd consider making that your trial period before giving up.

    The other factor to bear in mind is just the general immune boost that we get from taking LDN... if youíre anything like me, even a bad cold can make your rosacea symptoms so much worse... I havenít had a single cold or cough in the two years Iíve been taking LDN. I have read that some of the doctors who originally started Prescribing Naltrexone in this off-label way take it themselves - and give it to their families too - purely as a supplement, realty, a health safety net. In this current pandemic, that little extra precaution seems a good idea to me.

    Anyway, thatís my news! Wishing you all the best and take care.

    Keep calm and carry on washing your hands

  4. #564
    Senior Member
    Join Date
    Mar 2019
    Posts
    382
    Country: UK

    Default

    Quote Originally Posted by Fiugs View Post
    Hi everyone... Original poster here.

    Sorry Iíve been away for so long, itís been a combination of being busy and also feeling that all my updates were essentially saying the same thing and any questions people were asking, that I could have answered were already answered somewhere back in the earlier posts in this thread.

    Anyway, Iím still doing OK. My initial improvements since starting LDN are still there.. so reduced (but not eradicated) flushing and my nerve pain is no longer there, having disappeared within the first week of using LDN which was, gosh... nearly two years ago!

    My cheeks and nose still flush more easily than ďnormalĒ skin... but nothing like they used to .. more of a blush than a flush mostly. I define ďblushĒ as rosy cheeks that feel slightly warm when touched with oneís inside wrist, but donít hurt at all and pass fairly quickly. The one exception is moments of stress or intense concentration, then I get a very localised flush right at the top of my cheeks that I can feel a wee bit, but I can get rid of such a flush by putting something cold from the fridge on it for a minute.

    So.. all in all... as Iíve said before, my improvements are significant but not as impressive as Judworth, our LDN poster girl! Hi there, dear Judy! Glad youíre still doing so well!

    Iím still taking the full LDN dose of 4.5 mg nightly. I take the capsules for convenience.

    Other news....

    IPL - I continue to have regular ipl sessions as I do feel they are still benefitting me... i have now had a total of 16 IPLs ince my rosacea first appears in early summer of 2016. interestingly, I was starting to think last year that they werenít as effective as they used to be, but the last two sessions (same settings as always) have made a noticeable difference to my remaining redness and I do feel that, for me personally, as my redness goes down and more of the remaining damaged capillaries are taken out, my capacity for flushing continues to reduce. So thatís good.

    TRETINOIN - having found a pub med paper or two that say 0.05% tretinoin, if tolerated, can help erythematotelangiectatic rosacea because it thickens the dermis, I wondered if my improved skin barrier (way, way less sensitivity) might be able to tolerate it, so I decided to give it a try. So last October I subscribed to tret through Dermatica.co.uk. I started very very cautiously, on 0.025% on top of moisturiser only every few days, which gave me no trouble at all, really. After slowly building up to applying that % every night, I moved up to 0.05% tret at the start of this year. Iím now up to every other night with that % and am doing fine. I know that it will likely be several months before I see any change or improvements, but thatís fine. If I feel it helps with whatís left of my rosacea symptoms, Iíll probably start a new thread dedicated to that, as I see that there have been some questions on the form in years past about the possible efficacy of tretinoin for subtype\phenotype 1 rosacea

    CLONIDINE - I also decided to try taking clonidine again. I tried it three years ago but the amount I needed to take then to get even the slightest effect was such that I could barely walk... and I got rebound flushing as each dose wore off. Now Iím taking the standard does twice daily and have no rebound flushing and itís helping with whatís left of my flushing.

    So dear friends, thatís where I am in all of this. I get the sense that LDN is working better for some of you than others.. Iím glad that itís helping some and sorry it doesnít seem to help everyone as much... itís the way of things with this weird condition though isnít it?

    Some of you seem nervous, understandably, when your face acts up after youíve been on LDN for only a little while. I canít say that happened to me at all.. and I must admit I wonder if your faces would have acted up anyway, and itís not to do with the LDN. Having taken LDN every day for two years now, my sense is that itís actually a very gentle drug and even the full dose is so tiny. Personally, I donít think it could make rosacea worse. I know Iím no doctor or LDN expert, but I would dare to encourage you to persevere and give it a chance to get to work on your system long term. When I started LDN I was told by the consulting prescriber that some people only see improvements after about 18 months... so if I were you Iíd consider making that your trial period before giving up.

    The other factor to bear in mind is just the general immune boost that we get from taking LDN... if youíre anything like me, even a bad cold can make your rosacea symptoms so much worse... I havenít had a single cold or cough in the two years Iíve been taking LDN. I have read that some of the doctors who originally started Prescribing Naltrexone in this off-label way take it themselves - and give it to their families too - purely as a supplement, realty, a health safety net. In this current pandemic, that little extra precaution seems a good idea to me.

    Anyway, thatís my news! Wishing you all the best and take care.

    Keep calm and carry on washing your hands
    Iím not giving up just dropped to 2mg I donít really want to take doxy but they wonít give me anything else Iíve done soolantra for four months my skin is so sore and I have burning Mouth and constantly peeling lips. Iím only on day 4 of doxy and Iím taking 20mg in the morning and 20mg in the evening. SD is quite bad but I canít use Shampoo on my face so been Sebclair but to be honest donít think itís working at all.

    Thought about putting daktarin on but a little scared to do it. Iím sweating on my forehead so much but skin is dry and fragile.
    Iím hoping the doxy will help as an anti Inflammatory. But to be honest Iím just desperate. Iím nearly 5 months on LDN.

  5. #565
    Senior Member
    Join Date
    May 2019
    Posts
    221
    Country: Switzerland

    Default

    wanted to give an update now I haven't been here for a while.

    I've now been on 1.5mg since Christmas and I'm very happy with this dose. I combine it with MSM and Valerian tablets and my flushing has reduced almost to none existent. Which completely escalated around this time last year. of course with the current situation I'm working from home which does help keep stress levels down, but I noticed things I eat or drink or do my flushing is way down. for example I'm even able to jog for ish 30min in the cold wind outside, no scarf, going back inside and I don't flush. I still have problems with my skin in general oily, pink, pores, zit here and there but I can live with that. My scalp can still be itchy but my hair loss stopped. Currently I just leave my skin alone for the most time. Under the shower when I treat my scalp with sulfur I cover my face and neck in it too. Sometimes cleasning milk at night. I notice sun still makes my skin feel very thin. So I try to cover up as much as possible. As well to test I drank milk couple of times and that did not go well so I avoid that too. Other than that all the ****ty food and drinks you can think of. Currently I just enjoy to feel better regardless how I look. Good thing is all this without taking Propranolol. I will probably take beta blocker in very rare cases like presentations at work or stuff like that.

    next step is to lose weight (again), reduce coffee, and drink diluted ACV each morning and see how I do. knocking wood
    I've read that some people actually do worse with rosacea symptoms when they lose some weight so I hope it isn't that.

    tltr

    what is helping me rn

    - LDN 1.5mg
    - MSM 1mgx2
    - Valerian tablets x3
    - no milk

    I hope you guys are doing well circumstances considered. This forum, Facebook, Reddit etc. has helped me a lot!
    Last edited by opare; 31st March 2020 at 03:17 PM.

  6. #566
    Senior Member
    Join Date
    Sep 2016
    Location
    Scotland
    Posts
    294
    Country: Scotland

    Default

    Quote Originally Posted by opare View Post
    wanted to give an update now I haven't been here for a while.

    I've now been on 1.5mg since Christmas and I'm very happy with this dose. I combine it with MSM and Valerian tablets and my flushing has reduced almost to none existent. Which completely escalated around this time last year. of course with the current situation I'm working from home which does help keep stress levels down, but I noticed things I eat or drink or do my flushing is way down. for example I'm even able to jog for ish 30min in the cold wind outside, no scarf, going back inside and I don't flush. I still have problems with my skin in general oily, pink, pores, zit here and there but I can live with that. My scalp can still be itchy but my hair loss stopped. Currently I just leave my skin alone for the most time. Under the shower when I treat my scalp with sulfur I cover my face and neck in it too. Sometimes cleasning milk at night. I notice sun still makes my skin feel very thin. So I try to cover up as much as possible. As well to test I drank milk couple of times and that did not go well so I avoid that too. Other than that all the ****ty food and drinks you can think of. Currently I just enjoy to feel better regardless how I look. Good thing is all this without taking Propranolol. I will probably take beta blocker in very rare cases like presentations at work or stuff like that.

    next step is to lose weight (again), reduce coffee, and drink diluted ACV each morning and see how I do. knocking wood
    I've read that some people actually do worse with rosacea symptoms when they lose some weight so I hope it isn't that.

    tltr

    what is helping me rn

    - LDN 1.5mg
    - MSM 1mgx2
    - Valerian tablets x3
    - no milk

    I hope you guys are doing well circumstances considered. This forum, Facebook, Reddit etc. has helped me a lot!
    As usual, I havenít been here on the form for a while, but finding this update from you has made my day Opare!

    I can well remember how much you were suffering and how desperate you were some time ago... it does my heart good to hear how much improved you are these days. Long may it last!

    The other good thing is... it seems to me that the greater the stretch of time we can keep our faces in a calm state, the greater the ongoing healing... as Iím sure we all know that each time our faces react and flare they get ever more Ďtrigger happyí, so the converse must also be true, if our faces stay clam for a stretch they are less likely to react massively when exposed to the usual challenges. That is at least what I have found.

    My face is a little pinker at the moment than it has been for a while, but Iím not concerned because I know itís due to my having moved up to a stronger tretinoin lotion recently and it always takes my skin a couple of weeks to get accustomed to a stronger dose before it settles down again. Itís a different kind of pinkness than what was my rosacea face anyway... I believe they call it the Ďretinol glowí

    Other than that, I am still prone to mild flushes when exposed to higher temps than my face likes, or when Iím stressed or concentrating... Writing complex emails is the worst! But I can bring the flushes down pretty quickly and easily just by holding something cool against my cheeks for a minute. I also admit that I do expose my face to much more challenging situations than I ever did before LDN and mostly I get through them without flushing ... and I NEVER flush the way I used to, really painfully and uncontrollably, for hours...

    I get through the average day with no real awareness of my face at all.. in that I canít feel it (I guess youíll all understand what I mean by that) I probably average about one mild transient flush every couple of weeks these days.

    Iím tempted to see what happens if I gradually wean myself off LDN, but i wonít make any changes whilst weíre in the current pandemic as taking something that boosts the immune system doesnít seem like a bad idea just now, does it?

    Much love to you all and hoping youíre all doing ok

    Fiona
    X

  7. #567
    Senior Member
    Join Date
    Aug 2009
    Location
    UK
    Posts
    1,669
    Country: UK

    Default Latest update.

    Hello All

    Just a quick update; I am still taking 2.5 mg of LDN daily and my flushing has been knocked out by about 99%, the nerve pain has completely gone too!

    A really interesting thing, is that I now sweat on my face!! YAY! I am exercising again daily (even with this hot weather in the UK at the moment) with no issues at all!

    Special hugs to Fiona (so glad all is well).

    For the most part my face is pale and after all these years of hell, I feel like I am 'almost' living a normal life!

    All the best to those on this journey!

    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






    .

  8. #568
    Member
    Join Date
    Nov 2018
    Posts
    92

    Default

    Delighted to hear the LDN is working well for most of you. I am actually in the process of weaning myself off Duloxetine ( which worked very well for nerve pain) and going back in to LDN as I am sweating a lot ( on my body) on Duloxetine.

  9. #569
    Senior Member
    Join Date
    Mar 2019
    Posts
    382
    Country: UK

    Default

    Quote Originally Posted by Momof View Post
    Delighted to hear the LDN is working well for most of you. I am actually in the process of weaning myself off Duloxetine ( which worked very well for nerve pain) and going back in to LDN as I am sweating a lot ( on my body) on Duloxetine.
    Good luck getting of Duloxetine it has pretty nasty withdrawal symptoms. Itís a horrible drug.
    Right my update on LDN. Itís had no effect on my skin at all. Energy wise itís given me 70% more energy.
    Iíve just gon up to 4mg and I have been on it 6 months. Iím guttered itís done nothing for my skin or ocular rosacea. But Iíll carry on for at least a year. But I suspect if it hasnít helped me by now it probably wonít.

  10. #570
    Member
    Join Date
    Nov 2018
    Posts
    92

    Default

    Quote Originally Posted by Rubydo1 View Post
    Good luck getting of Duloxetine it has pretty nasty withdrawal symptoms. Itís a horrible drug.
    Right my update on LDN. Itís had no effect on my skin at all. Energy wise itís given me 70% more energy.
    Iíve just gon up to 4mg and I have been on it 6 months. Iím guttered itís done nothing for my skin or ocular rosacea. But Iíll carry on for at least a year. But I suspect if it hasnít helped me by now it probably wonít.
    That is such a pity re. the LDN. Were you taking tablets or liquid?
    I have dropped from 60 to 30mg Duloxetine and so far feel fine so fingers crossed.

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
  •