Minocycline – What dosage etc?

[Mumof3]

I recent tested positive for SLC70 (scleroderma) but don't really have any symptoms (other than some muscle twitches and occasional cramps).  I haven't been diagnosed yet and probaby have to wait a while to see a rheumatologist or AP doctor.  I am seeing an internist tomorrow and want to ask her to put me on minocycline.  I am new to this and don't have any info. yet.  What dosage etc. should I be asking her to put me on?

[marg]

Dosages vary so much with individuals and also with DX. When my adult daughter started on Minocin for RA, her rheumy put her on 100mg. 2x daily. It was  too much and my daughter could not tolerate it. When she switched to pulsing, that is 100mg. 2x on Mon. Wed. Fri. , she began to improve very quickly.

However, it seems that scleroderma patients are often on daily doses. Hopefully others here will speak from their experiences- and what could be taken to lessen the pain from “herxes” – the discomfort caused by the toxins from a lot of die-off of the mycoplasma ( that's the theory re. infectious cause of these diseases anyway.)

it will really help you to get an AP doctor on your side as soon as you can.

[richie]

Hi
what symptoms have you had that prompted even having the scl70 test —
Richie

[camm]

I don't have scleroderma so I don't know if the dosage would be different for that than for chronic fatigue/fobromyalgia, but I'm on 100 mg 2x/day.  I'm not “pulsing”- I take it daily, and week three was awful with respect to herxing.  It's week four now and I'm having some other problems but the joint and muscle pain has lessened.

But like most folks here, I'm doing a lot of other things besides the Minocin – gluten free diet, lots of vitamins and minerals, etc……so i agree, getting a good doc to get you on the regimen is key.

Good luck-

Camm

[Mumof3]

My symptoms are neurological. My doctor suspected MS but that has been thoroughly investigated and ruled out. I get a lot of muscle twitches and numbness (which has gone away). I occasionally get muscle cramps but nothing else. My internist was shocked at the bloodwork because she doesn't believe I have any symptoms of scleroderma.

[Maz]

[user=869]Mumof3[/user] wrote:

I recent tested positive for SLC70 (scleroderma) but don't really have any symptoms (other than some muscle twitches and occasional cramps).  I haven't been diagnosed yet and probaby have to wait a while to see a rheumatologist or AP doctor.  I am seeing an internist tomorrow and want to ask her to put me on minocycline.  I am new to this and don't have any info. yet.  What dosage etc. should I be asking her to put me on?

Hi Mumof3,

When the minocycline and scleroderma trials were done, I believe the dosage used was the Harvard Protocol, which is 100mg twice a day. Perhaps Richie would kindly just confirm this. Generally speaking, most APers with scleroderma do very well on this dose, but there are always exceptions, as Marg pointed out and some APers find they have to adjust their dose down if they find they are a bit hypersensitive or experiencing the early dizziness/vertigo, nausea, etc that some get on minocycline (but usually passes).  

Whatever dose upon which you decide with your doc, it's a good idea to start out low and slow on minocycline in the first few weeks to see how you're going to respond. Possible dizziness can be managed by taking the minocycline a couple hours before bed (and an hour or so away from dinner and all supps). The other reason for taking it well before bedtime is that reflux can cause quite severe esophageal burning, so it's best to drink a full glass of water to ensure the cap goes right down and then to remain sitting up for a good couple hours. This is a good precaution to take with any of the tetracyclines. Taking it at night also helps to avert any feelings of vertigo. For possible nausea, taking the minocycline with a light snack is said to help. 

Hope your visit with your internist was fruitful today!

Peace, Maz

[Mumof3]

Thank you for your response and advice. The internist would not prescribe me antibiotics. She said that she can't diagnose me. I need to see a specialist to diagnose me. She doesn't think my symptoms are related to scleroderma at all. Now I have to wait to see a rheumatologist. Hopefully I won't have too long to wait. In the meantime, I am seeing a complementary medical doctor tomorrow (Dr. D. in Scarborough). I will ask him for a script but I want him to check me for food intolererances etc.

[Author]

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