Home Forums General Discussion According to my Doc

This topic contains 9 replies, has 5 voices, and was last updated by  lynnie_sydney 2 years, 3 months ago.

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  • #308817
    JustDiagnosedChris
    Participant

    According to Dr. F. (my ap doctor) Clindamycin is the best of the best of ABX to treat SD. Since I have experienced DILE with minocycline, I will be going over using clindamycin with him in about 6 weeks.

    #375415
    richie
    Participant

    Hi Your doctor as a first option uses minocycline for the treatment of scleroderma –DILE is very rare but I guess you were the unfortunate one to get it –It is seldom heard of here on this board !!!!!!!!!!!!!!!!
    richie

    #375416
    PhilC
    Participant

    I don’t understand why your doctor doesn’t switch you to doxycycline — it’s the logical thing to do when a patient develops DILE from taking minocycline. And there’s no reason why you can’t be on both clindamycin and doxycycline. Mino + clindy or doxy + clindy — these are common AP combinations.

    Phil

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

    #375417
    may8
    Participant

    Can somebody explain what is DILE ? Much appreciated and thanks .

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #375418
    lynnie_sydney
    Keymaster

    Can somebody explain what is DILE ? Much appreciated and thanks .

    Drug-induced lupus erythematosus (DIL or DILE)

    Hope this helps!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #375419
    may8
    Participant

    Thank you lynnie_sydney. When I told my rheumy in my last visit that I am on AP, he advised me to rethink abt. this option that it is not proven and that AP can result in lupus like symptoms and I guess he meant DILE. Keeping my fingers crossed that AP will be the treatment for me. It has just been 4 months, and not much of a relief to report, but keeping positive.
    Keep healthy.

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #375420
    may8
    Participant

    justdiagnosedchris, can you tell me how you develop DILE, what other symptoms did you develop and how fast was it diagnosed after you started on Mino. Thanks

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #375421
    richie
    Participant

    Since you arent seeing any results –the possibility strongly exists that you are taking too light of a dose –DILE is so rare that I would suggest you not even give it any mind unless you have definite lupus symptoms –The majority of folks with diffuse take 200 mg daily of minocycline –I am taking 200 mg daily for 16 years now and have complete remission –your dose is 300 mg weekly my dose is 1400 mg weekly —-AS long as you take enough probiotic -you shouldnt have any difficulties -I use the 1400 mg weekly now as a maintenance dose –never changed even when I got all better —
    richie

    #375422
    may8
    Participant

    Richie, I have since then increased my mino to 100mg x 2 daily after the 1st month. I need to correct the dosage in my profile. Experiencing increased joint pain and excruciating r shoulder pain with no relief after physiology and accupuncture.

    It is good to know that DILE is rare, I was scared when my rheumy mentioned it, definitely don’t need another disease to deal with when we are dealing with this horrible inpredictable disease. Thanks

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #375423
    lynnie_sydney
    Keymaster

    may – it sounds like you have some overlapping inflammation with your SD. I also notice that you began AP in May this year. That is not a long time ago. Because of this, if you changed your protocol reasonably recently, you may well be experiencing a “herx” response.

    It is very difficult for SDers to consider dialling back their dose because the main thing is for them to get their disease under control at the earliest possible time. So, ensure you are doing everything to de-tox (lots and lots of filtered or bottle water), far-infrared saunas can help a lot too. Others will no doubt chime in with what de-tox methods helped them.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

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