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(restart Log) Starting Up With Ldn, My Observations At 1 Month

Discussion in 'Member Journals' started by davidrn, Nov 16, 2014.

  1. davidrn

    davidrn Member

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    I started , and now they are lost, a few postings on my experiment with LDN (low dose Naltrexone) as a replacement for Embrel and Methotrexate for my RA (Rheumatoid Arthritis).

    I continue on daily T Cyp at 10 units/ 70 a week, last TT was 740. E2 was 24, so no AI.
    Here are a few of my notes, from Yahoo LDN/RA group:

    Started D,L-phenylalanine, ,also take a few amino acids before I head to the gym in AM.The pain in my L hand, like RA pains in general is now gone, and replaced with another area, I have increased my Green Pastures fermented Cod Liver oil, I think that has helped. My CRP was slightly elevated, but still just barely, for someone with RA. I increased my dose to 2.4 mg last night, wanted to creep up on 3.0 mg, a few days at a dose. I do take 88mcg of synthroid, and was taking 5mcg of T4 twice a day, but noticed a slight increase in Tachycardia, so shifted my T4 to awakening, and not bedtime. I guess thyroid meds will need to be adjusted.

    I awoke this AM with a temp of 98.1. I was concerned even more because my Temps kept rising each morning, until a few days ago it was 98.9. Took 5mg of prednisone twice a day and my temp is already back into the normal AM range. Pain is down 80%, returned to the gym this AM. I ordered 2.5 mg tabs of Prednisone last Rx and I hope to shift down to 2.5mg twice a day. Until the LDN has kicked in.

    I am currently at 3mg dosing each night of LDN. Sleep is mostly better, I did discover too much sugar in PM will still effect my sleep, had ice cream at 6pm, and awoke more than usual.RA pain in various joints continues, so I continue with Prednisone dosing. I have moved between 5 to 10 mg /day, using 2.5mg tabs. I have received a few notes asking about taking the Prednisone and LDN concurrently, my rationale for spacing the Prednisone dosing out is the short half half. At 60 minutes, and completely gone in 3 to 4 hours, if you are using Prednisone to reduce inflammation, and thus pain, then taking multiple doses a day will benefit you.

    Sorry for the lengthy catch up posting, but, I am writing a twice a week post at Yahoo, so, this is a synopsis.I have now been on LDN about a month. Starting slowly with an introductory dosage pattern has helped with side effects, I have not suffered much in sleep. I do have "better" not bizarre or scary dreams. With low doses of Prednisone, I have controlled the RA pains that I get many days. The current thought in the LDN community is that 10mg or less is not Immune supressive. As to Pro Libido effects, slight improvement, and it does seem to help with night time and awakening erections.
     
    Last edited by a moderator: Nov 16, 2014
  2. davidrn

    davidrn Member

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    I have tried 3 times to edit this posting and add spaces, so it's not one run on paragraph, won't allow me to do that. Sorry
    This is actually 4 or 5 paragraphs
     
  3. BadassBlues

    BadassBlues Super Moderator Staff Member Super Moderator

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    Just helping out...:001_smile:


    ****plus I was cross eyed after reading the first one...
     
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  4. davidrn

    davidrn Member

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    Thank you for doing that, the issue might be using Goggle Chrome? I thought I set it up correctly at first, but came out as one run on paragraph, and then no help with edit feature. After I edited, it just kept thinking, and the arrow continued for 10 minutes with no conclusion.
     
  5. davidrn

    davidrn Member

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    Another update, things continue going well.
    I am now at a little over 5 weeks of LDN, increased to 4.5mg, and that seems to be fine also. Other than some slight sleep issues, I can't complain of side effects. Actually, the dreams don't seem to be as interesting as they were at the beginning.
    Have a 6 month follow up appointment with my traditional Rheumatologist, (who knew nothing about MTHFR, LDN, or Gluten and autoimmune diseases). I was going to quit seeing him, but 2 years ago, I had the Vector test, which had some interesting results if you are into Cytokines and Leptin levels. Hoping he still using the test, and I can convince him to repeat.
    I have now been off Enbrel and Methotrexate almost 2 months. The past week or so, I am using 2.5mg of Prednisone at awakening, and 5mg at bedtime, no real pain, and certainly not a flare. Looking forward to the next few months, and hoping I can decrease/quit the prednisone before the 6 month point.
    Following the recommendations of the LDN community, I am also taking DL-Phenylalanine and Alpha Lipoic Acid, as supplements
     
  6. seekonk

    seekonk Active Member

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    I can't tell from your post if you started prednisone when stopping Enbrel. If so, it may be the prednisone that is tamping down the symptoms, not the LDN.

    Also, prednisone may be worse for you than Enbrel, so I personally wouldn't necessarily call that a good switch.
     
  7. davidrn

    davidrn Member

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    Among the LDN community, less than 10 mg of prednisone is considered, Non Immuno Suppresive. I have used Prednisone , as needed, over the past 15 years, usually in lower doses, currently I am moving between, 2.5 to 7.5mg a day. Haven't skipped any days yet, hope so soon. Yes I am using the Prednisone for the RA aches, but not a full blown RA Flare, at this time. It could take as much as 6 to 9 months for me to gain all the immuno modulating effects of LDN, and not need any adjunct Rx aides.
    I had a 3 year period where I took Prednisone at 20mg a day, pushed me into a higher risk group for eyes and retina, my insurance company called and told me ,no more Optometrists, they requested I go to an Ophthalmologist (more cash).
    Have you used LDN? and if so, for what reason?
     
  8. davidrn

    davidrn Member

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    Just an update as I continue into the 4th month of LDN. I seemed to be tolerating the 4.5mg, which is considered the standard dose, but I noted some wakefulness after 3 or 4am, although I still can return to sleep until 7-8am frequently. Pleased with this improvement in my sleep, but wondered if decreasing the LDN would have any effect, so last week I dropped to 4mg each bedtime. Will reevaluate this change in a few weeks, I would assume I would go back to 4.5mg,(if no change noted) but dropping to 3.5mg could also be a choice.
    I tried a few times to take 2.5mg AM/PM but after a few days I had some increased pains, so I continue on 5mg of Prednisone at Bed, and 2.5mg upon awakening. This low dose will not interfere with the potential/future benefits of LDN, but is preventing any RA pains from becoming an issue. I understand the side effects and dangers of prednisone usage, but it is much safer than Methotrexate and Embrel.
    I am going to supplement with CLA over the next month, and see if it has a positive effect on the RA, my test for effectiveness will be successfully dropping the Prednisone dose.

    I also have decided, since I can donate blood now, to decrease my T Cyp from daily to every other day. The daily kept my E2 and my H&H at baseline and required no medical interventions, but I will watch how I feel, and go from there. Will reevaluate the T Cyp dosing in a month or so also.
     
  9. JanSz

    JanSz Well-Known Member

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    Instead of CLA consider eating beef tallow
    Beef Tallow - small pail

    It should have good amounts of CLA and good deal of Omega6 & omega3 at good ratio.
    I also get from them lard and duck fat.

    ================================
    I associate RA with inflammation.
    Good metric of inflammation is HS-CRP
    Good way to lower inflammation is to eat at least half proteins as a seafood.
    That improves on inflammation and helps with O6/O3 ratio.

    Also Omega7 (palmitic acid) is great at reducing CRP.


    [​IMG]
     
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  10. davidrn

    davidrn Member

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    JanSz, thanks for the chart,for me, it is just reinforcing my current diet plan. I eat 3 servings of sardines a week, and at least 1 to 2 other seafood meals a week. I only eat grass fed/pastured meat (Beef/Lamb/pork, and I know the farms where they come from)
    Also Omega 7s are in Raw Milk, I have been drinking that for almost 2 years now.
    I started my diet changes in Paleo, before going more Weston A Price, but I believe the Omega 3 to 6 ratio theory is correct. I was tested 2 years agoa, and my ratio was 6.5 to 1, (Omega6-3) that should only have improved since my lifestyle changed.
    The last big Omega 7 food is Macadamia Nuts, funny, I keep a bag in my glove box as a snack.
    The CRP (or a Sed rate) are my biggest concern, on Embrel, my CRP was about 1, at the 2 month point off the RA drugs I hit 15, but then started on the low dose Prednisone. Last night I tried decreasing (again) to 2.5mg in AM/PM, was 5mg at bedtime prior. Just need to make it through 3 days to know if the dosage is enough to hold me. Thanks again for your comments on Inflammation, it effects everyone of us here.
     

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