Should you stay on Minocycline at least 1 year before determining efficacy?

[Drey90]

Should you stay on minocycline for at least 1 year before seeing reversals in SD symptoms/damage or should you continue on it if you see no results?

[PhilC]

Hi Drey,

Sorry for the late reply. How much minocycline have you been taking? And how long have you had scleroderma?

Phil

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

[Drey90]

I Wasn’t expecting a reply after so long. I’ve taking mino for around 3 months. I’m on a pulsed dosage M-W-F 100mg 2x/day. I’m starting to feel better. My hand calcinosis was extremely stiff and hard, now they are softening and minimally shrinking. I find it rather interesting that I was diagnosed with CREST SD in 2019, via elevated ANA levels accompanied by raynauds. I had a major flare earlier this year and began seeing an AP rheumatologist shortly after. My blood work shows everything to be in the normal parameters except elevated MYCOPLASMA levels. I’ve been told that I no longer meet the criteria for an SD diagnosis according to the blood work, but the physical manifestations of raynauds, calcinosis and fatigue say other wise. I’m going to stay on mino as long as the Dr. decides otherwise.

[PhilC]

Hi Drey,

Drey90 wrote:

I’m on a pulsed dosage M-W-F 100mg 2x/day.

That’s a little unusual. Did you choose that dose or did your doctor?

Based on what we’ve seen here, most scleroderma patients being treated with minocycline are taking the full dose every day. There are some exceptions, though. Patients who have more inflammation than is typical for scleroderma are sometimes treated with pulsed dosing for a short period of time, like a few months, before switching to daily dosing.

Phil

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

[Lynne G.SD]

Hi Drey;
I also have SD.Have been on mino then doxy for the best part of 25 years.Everything reversed in a few years and doctor said I could stop AP.Low and behold it came back.I have tried to stop AP every few years but too avail.Once it started coming back along with a bad case of vasculitis that even scared to doc.I remain on low dose doxy and have no more problems with SD.

[Drey90]

Hi Lynne,

I was skeptical before starting AP, but 4-5 months in, my worst ailment, the calcinosis is slowly improving. As I’ve read here, it’s a slow therapy but once the progression stops improvements/re ersals start happening. I can’t wait until the only symptom I have is slight raynauds. I’m glad it helped reverse your condition.

[Author]

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