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Hi all. I am sure all here are aware by now how I have had negative reactions to mino since starting therapy approximately 4 months ago. I thought I finally found a dosage that worked for me…..100 mg x 2 every other day. Although I did not feel perfect, I could function. Well recently my lupas symptoms have come back full fledge. I am getting burning in my scalp, joint pain, body aches like the flu, headaches. Even when I first got lupas symptoms a year and half ago, I never got the burning skin or scalp. And the flu like symptoms are way more intense. Dr. S prescribed me IV clindy 1 a month starting this week so I skipped 2 days of mino since I am only doing antibiotics every other day. Results…no body aches, no joint pain and no burning head. I felt almost normal. Got up this morning, took mino, yup aching joints and burning head within a hour. Can I have every ones thoughts on this? I hate to give up mino cause I know how effective it is and I would push through if I thought this would pass but I’m wondering if that is the case. Thank you.
stacy
Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x dailySnglbear24, did you try doxycycline yet? Some people are initially just too hypersensitive and can’t handle minocycline. It’s possible that it can be used later, but some folks just do better on doxycycline. Some even do doxycycline and later substitute some doses of doxy with mino to gradually switch over. There was a lady here a few years ago who initially couldn’t use mino, even in the tiniest doses, but once she addressed heavy metals and a confection of babesiosis, she was able to use Mino and recoup her lost quality of life. Everyone is so unique, which is why the protocols are just guidelines….not a one-size-fits-all.
Wishing you every success in finding your answers. Do you work with an integrative doc who can do a bit of detective work with you?
Hi Stacy,
It looks like you will probably need to avoid minocycline. Talk to Dr. S. about trying demeclocyline instead. The chemical structure of demeclocyline is very close to minocycline, so there’s a possibility that demeclocyline may work for you. Also, a PubMed search turned up no published reports of demeclocyline causing DILE.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPhilC, interesting about demcolcyline as I often as the same issue as the snglbear on this. So demcolcyline is a better choice in this situation? I have the same concerns. do you know if it is better for Lupus / MCTD patients than regular mino? I might see Dr. S. as well so good to know someone will discuss this with him before I see him.
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