Home Forums General Discussion LDN and prednisone

This topic contains 13 replies, has 5 voices, and was last updated by  kcdrake 3 years, 6 months ago.

Viewing 14 posts - 1 through 14 (of 14 total)
  • Author
    Posts
  • #308415
    kcdrake
    Participant

    Hi,
    So my mom has been on the AP for about 9 months. She has also been on 4.5mg LDN and 15mg prednisone…. amoung other things. I’m getting mixed reviews about if LDN and prednisone are effective together. She has been getting very minimal relief and we are looking for other solutions… She doesn’t know how to wean off the prednisone b/c its the only thing that gets her out of bed.

    Just looking for some advice. Thanks

    #372958
    Calida
    Participant

    @kcdrake wrote:

    Hi,
    So my mom has been on the AP for about 9 months. She has also been on 4.5mg LDN and 15mg prednisone…. amoung other things. I’m getting mixed reviews about if LDN and prednisone are effective together. She has been getting very minimal relief and we are looking for other solutions… She doesn’t know how to wean off the prednisone b/c its the only thing that gets her out of bed.

    Just looking for some advice. Thanks

    Hi kc,

    I’m not an LDN expert but I’ve been using LDN and 5 mg of prednisone for about a year and seem to get the full benefits of both. They’re not contraindicated but there’s no synergy, either, as one is an immuno-modulator and the other an immuno-suppressor. Dr. Jill Smith, who conducted the successful Crohn’s/LDN study, allowed the patients in the study to continue their use of prednisone, up to 10mg I believe. I think the general consensus is that the pred should be10mg or below with LDN. The benefits of LDN with 15mg pred may be reduced but are not negated.

    Two questions: how long has your Mom been using LDN? It can take weeks to months to see results. And two, did she start at 4.5mg? Most docs advise starting low and building up to 4.5, the max. With LDN, it’s a case of “less is more”. The MSers are LDN warriors and tend to use the higher dose in the Bihari protocol spectrum (3.0-4.5) while those with thyroid autoimmune tend to stay very low, usually 1.0-1.5mg to start but no more than 3.

    Many take the LDN at bedtime and the pred about 12 hours later in the a.m. to get the greatest benefit of the rebound effect (the increase in endorphins).

    Hope this helps.
    Cali

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #372967
    Anonymous
    Participant

    Hi,
    What I would recommend your mother is to try the “Marshall Protocoll” , it may be helpful. The used drug is Olmesartan which stimulates the intracellular immunesystem and is effective if there is a bacterial infection inside the cell causing the desease but the immune system is not aggressive enough to kill the bakteria even when using antibiotika (actually bakteriostatica in the AP). Another possibility is that your mother needs a more aggressive antibiotic protocoll and minocyclin alone is just not enough (Wheldon protocoll is such a more aggresive version which she could try).
    This is not a medical advice just an opinion of a patient.

    #372965
    RBFV
    Moderator

    Road Back Foundation wishes to remind forum users and visitors that it does not engage in medical advice. It provides information on and advocates for the use of low-dose antibiotic protocols to treat rheumatoid diseases, prescribed by licensed medical doctors, such as the protocols developed by Dr Thomas McPherson-Brown and those which have been developed as a result of the MIRA clinical trial.

    This Forum was set up by the Foundation as an open, peer-to-peer communication vehicle in which members can freely ask questions and post their personal experiences and opinions. Specific antibiotic protocols, dietary regimes and supplements as advocated by Forum users are to be taken as personal opinion, not as medical advice or advocacy by the Foundation.

    viewtopic.php?f=1&t=1801

    RBFV

    #372964
    PhilC
    Participant

    Hi Cali,
    @calida wrote:

    I think the general consensus is that the pred should be10mg or below with LDN.

    There’s no such consensus, actually. The apparent consensus comes from lots of people parroting incorrect “information.” One way to look at it is that this is outdated info — even though there was never any proof that it was correct. Without scientific proof, the idea that LDN and prednisone are incompatible falls into the area of opinion or speculation, not fact. A problem arises when a lot of people (who don’t know any better) go around repeating a doctor’s opinion as if it were fact. I strongly suspect that that’s how this “consensus” came about.

    More on this later…

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #372963
    PhilC
    Participant

    Hi,

    @kcdrake wrote:

    So my mom has been on the AP for about 9 months.

    We need information (more details) in order to better help you.

    @kcdrake wrote:

    Hi,
    She has also been on 4.5mg LDN and 15mg prednisone…. amoung other things. I’m getting mixed reviews about if LDN and prednisone are effective together.

    The prednisone is not a problem (with respect to compatibility with LDN), but the LDN might be — LDN makes some people worse. I’m not sure why LDN makes some people worse, but I suspect that it may be dose-related. Has your mother ever tried taking lower doses of LDN?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #372968
    Calida
    Participant

    @philc wrote:

    Hi Cali,
    @calida wrote:

    I think the general consensus is that the pred should be10mg or below with LDN.

    There’s no such consensus, actually. The apparent consensus comes from lots of people parroting incorrect “information.” One way to look at it is that this is outdated info — even though there was never any proof that it was correct. Without scientific proof, the idea that LDN and prednisone are incompatible falls into the area of opinion or speculation, not fact. A problem arises when a lot of people (who don’t know any better) go around repeating a doctor’s opinion as if it were fact. I strongly suspect that that’s how this “consensus” came about.

    More on this later…

    Phil

    Hi Phil,
    You’re absolutely correct, the consensus is not based wholly on fact, it seems to be derived from the Crohn’s study (see second link below) and the practice of Dr. McC., who, according to the lowdosenaltrexone.org group, prescribed 10 mg of prednisone along with LDN for her autoimmune patients.

    I subscribed to the American and British LDN groups to learn about this medication when my doctor, found through RB, first prescribed it. He directed me to the .org group for more info. At that time, I was taking 5 mg of prednisone and still my diffuse SD was a runaway train, progressing rapidly. The LDN stopped the progression within weeks and reversed some of the skin issues. When the scleroderma doc at a well known center increased my pred dose to 10mg, it re-activated the SD progression. I quickly returned to 5mg and stabilized. Attempting to reduce the 5 mg dose also caused problems. I remained stable for 10 months using only LDN and pred to treat my disease. I started AP during month 11 and have improved.

    I learned, early on, that searching for LDN “experts” was futile. The disagreements amongst the most prolific contributors at the LDN sites were mostly related to time of dosing and prednisone amounts. I relied on the two well known published LDN studies, the Crohn’s in 2011 and the most recent 2014 study “The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain” (first link below) for further education. A quote from this study: “Pharmacologically, there is little to expect in the way of interactions, though synergistic effects with anti-inflammatories and (DMARDs) should be investigated….” The earlier successful Crohn’s study allowed patients using prednisone to continue the use “at 10 mg or less daily…” for the duration of the study.

    Anecdotally, it seems the success or failure of LDN, when combined with prednisone, is individual and may be dose related with regard to the dose of LDN and the dose of prednisone. Until further studies are completed, due diligence on the part of the patient and experimentation may be the only way one can learn what will work best in his or her case.

    Without scientific proof, the idea that LDN and prednisone at doses higher than 10mg are compatible falls into the area of opinion or speculation, not fact. Thankfully, we have the science behind the Crohn’s study that established that LDN and up to 10mg of prednisone is effective in treating at least one autoimmune disease.

    Like you, Phil, I am curious about the relatively high dose of 4.5mg of LDN prescribed to kc’s mom.

    All the best,
    Cali
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/#!po=8.92857
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3381945/

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #372959
    PhilC
    Participant

    Hi Cali,
    @calida wrote:

    Without scientific proof, the idea that LDN and prednisone at doses higher than 10mg are compatible falls into the area of opinion or speculation, not fact. Thankfully, we have the science behind the Crohn’s study that established that LDN and up to 10mg of prednisone is effective in treating at least one autoimmune disease.

    Where did you get the idea that the Crohn’s study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3381945/) supports the notion that LDN would less effective when taken with prednisone at doses higher than 10 mg? Was there a discussion about this somewhere on the Web?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #372962
    Calida
    Participant

    @philc wrote:

    Hi Cali,
    @calida wrote:

    Without scientific proof, the idea that LDN and prednisone at doses higher than 10mg are compatible falls into the area of opinion or speculation, not fact. Thankfully, we have the science behind the Crohn’s study that established that LDN and up to 10mg of prednisone is effective in treating at least one autoimmune disease.

    Where did you get the idea that the Crohn’s study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3381945/) supports the notion that LDN would less effective when taken with prednisone at doses higher than 10 mg? Was there a discussion about this somewhere on the Web?

    Phil

    Hi Phil,

    The Crohn’s study supports the use of LDN and 10mg or less of prednisone, nothing more, nothing less.

    My personal experience demonstrates that my disease responds well to 5mg of pred and LDN. Increasing the dose to 10 mg of pred cancelled the LDN benefits for me. You told kc that “the prednisone is not a problem (with respect to compatibility with LDN)…” My experience indicates that the dosage of pred with LDN is a problem, a very big one, if it negates the LDN benefits and causes disease progression, which it did in my case.

    Phil, can you support your opinions with regard to LDN and prednisone? Have you used both or either? Good or bad personal results? Have you found studies supporting your opinions? My life depends on facts and data. I’ll accept anecdotal evidence if the source is reputable. A consensus among a group of people who have actually used LDN with prednisone is a start.

    All the best,
    Cali

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #372969
    kcdrake
    Participant

    Thank you for your comments,

    I think her doctor just prescribed a third antibiotic called Metronidazole…. she is supposed to take it for 21 days. I did not know taking LDN might make her symptoms worse!!! She has been on 15 mg prednisone and 4.5 LDN for almost 9 months. She’s also on two different antibiotics, MSM and other anti inflammatory meds. Do you suggest she drops the LDN for awhile and see if it helps? Thank you again for your input, the pain and lack of progress is REALLY getting her down. She also runs a preschool and is stressed to the max. We tell her how much stress effects RA but its her career. Thank you

    #372970
    kcdrake
    Participant

    and I think her doc bumped her up to 8mg LDN…. so maybe she needs to go lower like 1.5mg LDN….

    #372960
    PhilC
    Participant

    Hi Cali,
    @calida wrote:

    The Crohn’s study supports the use of LDN and 10mg or less of prednisone, nothing more, nothing less.

    There is nothing in that research paper that supports the idea that LDN would be less effective at doses of prednisone higher than 10 mg. It’s true that people who participated in that study had to be taking 10 mg or less of prednisone, and they were not allowed to be on certain immunosuppressants. However, those restrictions had nothing to do with LDN being incompatible with prednisone or other immunosuppressants — I am fairly certain of that.

    Apparently, others have read that Crohn’s study and wondered if one can take LDN with immunosuppressants because they contacted the lead author of the study, Dr. Jill Smith, and asked her about it. People have also asked Dr. Ian Zagon similar questions.

    You can read a few of the replies here:

    Should LDN be used with other disease modifying drugs for Multiple Sclerosis?
    Anyone take LDN with 6MP or other immunosuppresant?

    @calida wrote:

    My personal experience demonstrates that my disease responds well to 5mg of pred and LDN. Increasing the dose to 10 mg of pred cancelled the LDN benefits for me.

    Which of your symptoms became worse when your prednisone dose was increased to 10 mg?

    Phil

    P.S. I have other relevant info/links, but don’t have time to hunt them down right now.

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #372961
    PhilC
    Participant

    @kcdrake wrote:

    and I think her doc bumped her up to 8mg LDN…. so maybe she needs to go lower like 1.5mg LDN….

    You should read this:
    viewtopic.php?f=1&t=8859

    My mother started at 0.5 mg. Contrary to what many people have been told, 1.5 mg is not the lowest effective dose.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #372966
    Calida
    Participant

    @philc wrote:

    Hi Cali,
    @calida wrote:

    The Crohn’s study supports the use of LDN and 10mg or less of prednisone, nothing more, nothing less.

    There is nothing in that research paper that supports the idea that LDN would be less effective at doses of prednisone higher than 10 mg. It’s true that people who participated in that study had to be taking 10 mg or less of prednisone, and they were not allowed to be on certain immunosuppressants. However, those restrictions had nothing to do with LDN being incompatible with prednisone or other immunosuppressants — I am fairly certain of that.

    Apparently, others have read that Crohn’s study and wondered if one can take LDN with immunosuppressants because they contacted the lead author of the study, Dr. Jill Smith, and asked her about it. People have also asked Dr. Ian Zagon similar questions.

    You can read a few of the replies here:

    Should LDN be used with other disease modifying drugs for Multiple Sclerosis?
    Anyone take LDN with 6MP or other immunosuppresant?

    @calida wrote:

    My personal experience demonstrates that my disease responds well to 5mg of pred and LDN. Increasing the dose to 10 mg of pred cancelled the LDN benefits for me.

    Which of your symptoms became worse when your prednisone dose was increased to 10 mg?

    Phil

    P.S. I have other relevant info/links, but don’t have time to hunt them down right now.

    Hi Phil,

    When I was first prescribed LDN, I’d never heard of it and was taking 5mg pred. I found the Crohn’s study and learned the patients were allowed to continue the pred, at the dose(s) mentioned. I wanted to give the LDN a chance but didn’t want to lose the small benefit I found taking pred. The LDN did amazing things for me within 24 hours and I had no disease progression and some reversal by the 4th week. The scl specialist increased the pred to 10mg about 8 weeks after I started LDN and, within 3 days, I could feel and see I was back to pre-LDN misery. Pain, skin tightening, thick dark skin patches, GI issues, and something I called deep tissue burning returned with a vengeance. I tapered to 7.5 and then back to 5mg over a 10 day period and recovered.

    The LDN and 5mg pred didn’t work against each other in my case. For me, the Crohn’s study established that the doses I took may lead to the success the patients in the study experienced, which it did. That’s all I needed to know before I took that first LDN capsule. I don’t know why the pts were capped at 10 mg, although I could guess, but I do share the link to the study with others who have concerns about using both. Anything beyond that – pred doses and such – is up to the individual and might involve experimentation. Some anecdotal pred/LDN combo info exists on the LDN boards.

    I had a quick look at the links you posted and noticed that the site you refer to states that Dr. Zagon called LDN an “immunosuppressant”, which is interesting. lowdosenaltrexone.org speaks of the “immune-modulating” effects of OGF (production stimulated by LDN) so I think of LDN as an immune modulator and the innate ‘decision’ to suppress or stimulate the immune response would depend on the nature of the disease being treated (autoimmune, HIV, cancer, autism…). Immune regulator, immune enhancer, immune modulator are the LDN descriptions I find among the more LDN savvy physicians. Still, the links you posted are interesting and I’ll follow up when I get home. Sooner, if I’m able.

    Here’s a bit from Dr. Jacqueline McCandless:
    “Dr. Ian Zagon (laboratory scientist) at Penn State says LDN and prednisone go together OK, but I usually ask patients to not combine them until they got down to 10mg a day on their way to weaning their kids off of prednisone/prednisolone. It seems counterproductive to give an immune enhancer (LDN) and an immune suppressant together, so I think the jury is out”.
    http://www.remedyspot.com/content/topic/860596-re-dr-jaquelyn-mccandless-on-using-steroids-wldn/

    I have the original quote but I’m away and using an iPad so I don’t have my bookmarked sites. I’ll follow up if this is still an active topic when I get home. 😀

    Off topic……at the shore for the annual family vacation, 20+ people including a few little ones hanging off me like ornaments on a Christmas tree. The little ones were quick to point out, with deep concern, that I have big brown spots on my arms. Once the arms were explored, the little ones were excited to find bigger and better (?!) patches. I’m using sunblock and a special UV blocking umbrella but the signs of SD look worse than ever. I’m not unhappy, considering….but I do hope they fade some day.

    All the best,
    Cali

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

Viewing 14 posts - 1 through 14 (of 14 total)

You must be logged in to reply to this topic.