Starting AP for scleroderma

[Tatiana]

Hi, I’m posting on behalf of my mum, who lives in Russia. She has scleroderma. It is fairly advanced, possibly starting to affect the internal organs, although no one seems sure.

She would like to start AP therapy. I’m wondering if 50 or 100 mg of oral Minocin 3 times a week would be sufficient?

Has anyone else had a similar issue and what has your experience been with it?

Many thanks

Tatiana

[Lynne G.SD]

Hi Tatiana;
I have been on AP for almost 20 years and was back to normal after the first 3 years except for the odd little thing such as itching like crazy as my skin normalized
The dose for SD should be 200mg a day.I could not take it on an empty stomach and had to have something substantial in my stomach before taking it,can’t take it with dairy or other foods that are high in minerals such as spinach.The dosage you are talking about is for people with RA which is not enough for us SDers.If mom has a reaction to 200 mg sha can lower it but work up to 200mg as fast as possible because this can be one deadly disease.
Wishing your mom good luck,Lynne

[Tatiana]

Hi Lynne, thank you for your reply. That really is very useful. I’ve ordered some Minocin for my mum and hope that it helps her : )

[Lynne G.SD]

Good morning sweet daughter;
A bit more info to help you along.
First 6 months can be rough,usually the symptoms getting worse or maybe herxing.Do not give up and say….this does not work.By the end of my 6 month period I had much less brain gog and pain was lessening.I used digestive enzymes that fixed my acid reflux and gerd in just a couple weeks,just maybe it could help your mom providing the valve between the stomach and throat is not damaged too much.This is so much cheaper than taking PPI that end up causing many other problems such as bone loss.I found the best brand was made by GNC ,a health food chain,dirt cheap,around 30$ for a big blue or beige bottle of 240 capsules.I took 2 before a meal and one with a snack.
About the 8 month stage my skin was sowing dramatic improvement except for the fact that it was as thin as onion skin.That was caused by the prednisone that I took for almost 2 years.Man,was I stupid then. If you have other questions ,let me know.

[Tatiana]

Hi Lynne, thank you, that really is appreciated. Scleroderma is rare, and I’m very grateful to have stumbled across the Road Back Foundation and this forum, as there is just so little information on this disease that’s of any practical use

[Tatiana]

Hi Lynne,

I’m just wondering – I’ve found some Minocin online that I can order: https://www.ukmeds.co.uk/minocin

However, long-term it would be easier if I didn’t have to try and get it as a prescription for acne. So I’m just curios if you have any links to where you buy your meds from, that have helped you?

Many thanks

Tatiana

[bonnielou]

Tatiana, I used the Minocin MR for quite some time — I think it’s a quality generic. Minocin is often prescribed for acne. You will need a prescription though — so hopefully you can get one.

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

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