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Hi, I have diffuse systemic scleroderma.
I have read the recommended dose is 2 x 100 mg minocycline (or doxycycline) per day. Since I am underweight for the moment, 37 kg for 155 cm tall (81 pound and 5’1), do you know if the AP dosage should be adapted according to the patient’s weight? If yes, which dose is advised then?
Also I’ve read some patients are taking minocycline only 3 days per week (Monday, Wednesday & Friday), do you know why?
Sorry I am from Belgium and there are no AP doctors here to help with these questions. Thank you.Hi Charlot,
Are you working with an experienced AP doctor? If not, suggest reading the summary of the Minocycline in Early Diffuse Scleroderma” study, carried out by Dr. Trentham, et al, at Harvard. Link and excerpt below:
Minocycline in Early Diffuse Scleroderma
All patients were administered minocycline at a starting dose of 50mg twice daily for the first month. The dose was then increased 100mg minocycline twice daily for the remainder of the study. In evaluations that were carried out at three-monthly intervals, this dose was found to be well tolerated.
The Pulsed protocol was used by the originator of AP, rheumatologist, Dr. Brown, for rheumatic diseases and the basic protocol is described in the Pulsed Protocol in the Resources section of this site.
Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 50mg dose (edited to reflect trial protocol). That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage (i.e., 100mg twice daily). Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch-Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.
Minocycline can cause some early vestibular symptoms (dizziness and nausea, like car sickness). Dr. Trentham designed the study to only prescribe 50mg twice daily for the first month in order to allow time for the patient to adjust should this occur. After this first month, the dose was increased to 100mg twice daily, thereafter.
Of course, in practice (because studies require everyone in one study arm to be on the same dose to reduce variables), there are exceptions to the rule. For instance, when dizziness and nausea haven’t settled, some SD patients will stick to just 100mg per day (or 50mg twice daily) until they adjust. If the person has an inflammatory overlap, as described above, like RA or lupus, they might need to start very low and slow, which is when the Pulsed method may work best (to avoid intolerable herxing). SD folk very often don’t herx, and want to treat swiftly progressive disease symptoms as aggressively as they can tolerate. So , will follow the Daily dosing schedule. If they do find they are herxing, then they would dial the dose back and gradually increase as tolerated.
We are just fellow patients here, but after one month, it’s usually pretty clear if the 100mg per day is well-tolerated. Individual tolerance is key. Minocycline was developed for teens with acne so the standard dose isn’t unusual. Rheumatics, however, can be a bit more sensitive, so it’s really about finding what dose a person can tolerate, bearing in mind that SD can advance quickly and so most people don’t want to mess with lower, Pulsed dosing schedules unless they have no choice due to their unique makeup and response.
Hopefully, in Belgium, you have access to either brand Minocin or a good quality generic. Generics seem to vary in effectiveness (according to patient experience shared here) and this can be due to multiple factors, like bioavailability, fillers and dyes.
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