Home Forums General Discussion severe widespread pain, please help

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #307818
    ellie6
    Participant

    I started LDN about 4 days ago for awful SI joint pain. After my first dose I already felt improvement. I am only on the 1.5 mg dose. Yesterday afternoon the pain returned but worse than before. My lower spine feels lie there is a horrible weight sitting on it and the pain seems to be radiating everywhere. I had a tough time walking in the store due to the heaviness I felt in my spine. I am unsure what to do. Do I continue with the LDN? They are capsules so I can’t lower the dosage. Do I stop it temporarily? I am in so much pain!

    #369934
    Lynne G.SD
    Participant

    Hi Ellie;
    You can reduce the amount just by carefully separating the capsule and plugging the ends with a wad of bread.Bread compresses very well and acts like a cork.I have had to do that with lots of meds.
    Lynne

    #369935
    vinny
    Participant

    I have had Psoriatic arthritis since 2007 and did very well on Minocycline until 2012. LDN may be helpful in some instances depending on the status of the immune system. I used it for a couple years with immune building herbs in the hope my system could fight the Minocycline weaken Mycoplasma bacteria. That turned out not to be the case and I got back into severe static pain in 2013. I dropped LDN and all the herbs meant to enhance the immune system(Isatis and shiitake) and had to go back on Prednisone and Methotrexate. I have since got off Prednisone and use 7.5mg of Methotrexate weekly and 100mg of Minocycline M,W,F. I plan on staying on MTX for the long term to see if it will help my toenail psoriasis, which has destroyed my toenails. I need to update my byline
    vinny

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #369936
    PhilC
    Participant

    Hi Vinny,

    Since you were doing well for several years and then relapsed, it may be that the protocol you were on was not sufficiently aggressive. What dose of mino were you taking when the pain returned?

    Phil

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

    #369937
    vinny
    Participant

    Phil,
    I had gone all the way to 100mg twice daily Minocycline with no relief. The disease continues to change and so the treatment scheme has to change with it. Might have to go to the biologics such as Enbrel some day as a last resort. I see many people on the psoriatic arthritis website who have to change biologics after a few years.

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #369938
    PhilC
    Participant

    Hi Vinny,
    @vinny wrote:

    I had gone all the way to 100mg twice daily Minocycline with no relief.

    It sounds to me like you were on a lower dose of minocycline and increased your dose of mino due to worsening symptoms. Is that correct? If so, what was that lower dose?

    Phil

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

Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.