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I’ve been taking minocycline for around 6 months and have actually got worse. I suffer with CREST syndrome. My calcinosis went from barely noticeable to full on small marbles under my thumbs. I recall Maz saying this is a slow therapy where the 1st year boiled down to ‘slowing the SD freight train’ and later seeing small improvements. I’ve spent hours going through the entire site with people saying their calcinosis went away after 2 months, etc… I’m losing hope as this is a chronic, progressive disease and I’ve seen 0 improvement.
Hi Drey,
I went to look back on your posting from 4 months or so ago when you had been on AP a couple months. Back then, you wrote about feeling optimistic of positive changes. The 6-8 month timeframe is generally perceived as a good place to reassess one’s situation if progress is stalled out, bearing in mind, as you say, the “slow therapy” thing.
By going back to the drawing board, folks might ask things like:
Is it time to think about trying a new generic brand?
Has the original generic brand that was helping been switched by the pharmacy?
Is it time to ask the doc about switching from the Pulsed to Daily Protocol, or vice-versa, or a combo protocol, for instance?
Are there any treatments, supplements (e.g., too much vitamin D3 without K2) or foods that may be interacting and preventing absorption?
What can be further done to help/heal leaky gut and dysbiosis for improved absorption?
Are hormones in balance (e.g., thyroid and parathyroid).
You’ll find guidance in the FAQ section (After Starting AP). Hope these ideas help to inspire you a bit. They’re common things that posters here have encountered that have been reported to slow progress. Everyone’s situation is uniquely different and nuanced so these are just a few initial thoughts.
It is such a shame the drug companies have basically made it impossible to obtain the original branded Minocin. Then we could all have a common base line. Several brands stopped working for me in the past. For some years now I have been using Minoz from India. It is a coated extended release tablet. The key to effectiveness is where the minocycline is bio-available in the digestive system. I continue to try and utilize the product supplied from my Cigna Medicare. They have switched brands often and nothing has worked for me that they supplied. They are now shipping Torrent tables. They are not coated and dissolve immediately in water and probably dissolve before clearing the esophagus. A few weeks ago I tried putting the Torrent tablet in an empty capsule. That makes the tablet dissolve further in the digestive process and that has worked for me. I now do one week on the Minoz from India and one week on the encapsulated Torrent tablet and I do equally fine on both. If you remember I have psoriatic arthritis.
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hi Drey,
How much minocycline are you taking, and which generic or brand are you taking?
How much vitamin D are you currently taking, and how old are you?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Drey,
How much minocycline are you taking, and which generic or brand are you taking?
How much vitamin D are you currently taking, and how old are you?
Phil
Minocycline (torrent brand) 100mg/2x day, Vitamin D 10000iu paired with K2 MK7 per the recommendation of my rheumatologist, also taking a couple of the systemic enzymes(Serrapeptase and Nattokinase) to help ‘break down’ the calcinosis cutis deposits. Other supplements I’m taking are a multivitamin, magnesium, b-complex, probiotic, ashwagandha, and tumeric teas.
Hi Drey,
In a previous message you wrote that your vitamin D level was tested and found to be low. How low was it?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Drey,
In a previous message you wrote that your vitamin D level was tested and found to be low. How low was it?
Phil
I don’t recall but it was low, ANA positive and raynauds was sufficient enough to be diagnosed with CREST. I mean I’m baffled that the medical and scientific community can’t find something to at least ‘dissolve’ the calcium deposits. I would assume since it’s such a rare disease big pharma isn’t interested in investing their money in research to find a possible cure.
Hi Drey,
I think that a major contributing factor in your case is the excessive dose of vitamin D that you are taking. You are taking over 16 times the recommended dose of vitamin D, and before that you were taking over 66 times the recommended dose.
Vitamin D is considered the most dangerous vitamin, and one of the reasons is that taking too much of it causes soft tissue calcification. I know of two people who developed hypertension (high blood pressure) after taking too much vitamin D. In both cases they were taking 5000 I.U. per day. The mechanism responsible for this is most likely stiffened arteries due to calcium deposits in the arterial walls.
Now, back to the recommended dose. The Institute of Medicine recommends 600 I.U. of vitamin D per day for most adults, and 800 I.U. per day for adults older than 70 years of age.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Drey,Phil;
Here is an article you should read ,it’s about vit>D being a double edged sword
As you have noticed I don’t get around here much,I need a 48 hour day.
https://www.medscape.com/viewarticle/1000303?form=fpf
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