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I now have in hand a scrip for Par tablet minocycline 100 mg to be taken twice a day every other day (same dose as when I was on Brand Minocin).
I think you need to find a better doctor. It makes no sense to use pulsed dosing for CREST, especially since your condition has deteriorated.
Phil
Well I wouldn’t say my condition has deteriorated per se, I just went back to the way I was before I ever started AP. And I did remarkably well on Brand Minocin on a pulsed dose (200 mg every other day). Even now I remain asymptomatic. I just have very high ANA numbers and have most likely resumed the high pulmonary pressures, i.e. 45, that I had before AP and which scared me to seek out treatment in the first place.
I’m a very pro-active person, and even though I felt fine, I was scared by the prospect of advanced pulmonary hypertension (and a lung transplant???) so I sought out an AP doctor. On Brand Minocin, both ANA and pulmonary pressures normalized.
It remains to be seen if this Par tablet regimen will work. Teva and Watson capsules didn’t. My doctor and I have decided that if there is no improvement in numbers after three months, I will probably try Brand Minocin from Canada. Although I will ask him about the “pulsed vs non-pulsed” dosing. Are you saying I should maybe be taking the mino daily instead of every other day? I can ask him that.
Hi I take 100 mg in the morning two hours after breakfast and the other 100 mg before bedtime -this works well for me –I strongly agree with Phil as I feel daily dosing is best for ANY form of scleroderma —I know so many people who have done well on daily dosing opposed to every other day —
Maz, wow, 4 hours for Thyroid meds? Rats. I get up once in the night generally to go to the bathroom…maybe I’ll start taking my thyroid pill then…
Maz, wow, 4 hours for Thyroid meds? Rats. I get up once in the night generally to go to the bathroom…maybe I’ll start taking my thyroid pill then…
Yea, it’s bloomin’ annoying, but this was my surgical endo’s advice….take levo at 6am and wait to eat for an hour, avoiding anything heavy in calcium or iron. All supps and any meds containing minerals need to be kept 4 hours away from levothyroxine or it interferes with absorption. I also have to take Cytomel twice a day, which further complicates things, so take that at 8am and 2pm. Similar rules for that one, unfortunately.
An alternate view I got from a different doc is to take what you want and eat when you want and then the doc will just increase the thyroid med doses as needed. However, this isn’t as reliable, because diet, meds/supps, and schedules change from day-to-day. Who really wants to take more meds than necessary or risk increased pain due to poor thyroid med absorption? So, my preference is to just set my alarm and roll back to sleep…taking it every day at 6am, then eating breakfast later and not taking any meds or supps till 11am.
Hi redrock,
Are you taking anything else for this problem?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi redrock,
Are you taking anything else for this problem?
Phil
The meds I take are thyroid, minocycline, meloxicam, and tramadol. I also take a bunch of supplements. But the only thing for CREST is the mino.
Hi,
Consider trying low-dose naltrexone (LDN). However, since you are taking tramadol you would need to make sure that you don’t take the LDN and tramadol too close together, and it would be prudent to start at a low dose of LDN (e.g., 0.5 mg).
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI did hear anecdotally that taking your mino with a tablespoon of apple cider vinegar in a glass of water helps with absorption. Has anyone else heard this?
My Husband is still doing quite well since May June episodes. I introduced Serrazime to help with the absorption of the Minocycline. Serrazimes or Serrapeptase breaks down biofilm that surrounds bacteria and allows the Antibiotic to work better. I’m pretty sure it also releases toxins initially as the Biofilms, breaks down and wondered if that was a contributing factor to my husbands episode in May June. Since then his RA rapidly improved. And with Iron tablets, his Anaemia of Chronic disease also better and no longer taking the iron. How ever he has had lung issues and during hospitalization in May for Atrial Fib, ( half a day) I raised concerns about the Chest X-ray, elevated white cells and ESR which he still has even thought the RA factor is down to 71 from 600++.
He was prescribed Azithromycin which seemed to help. We upped his Minocycline to 200mg Alternate days. And he improved. Finally got the Infectious disease Dr to test his sputum and are waiting for the results of cultures which takes six weeks. There is a Mycobacterium showing up and he is waiting for the species to treat. It seems the Minocycline is not treating it. He is also now taking N Acetyl Cystine which is recommended for Lung problems and is finding it helpful. During the May episode his lungs got worse and he developed episcleritis and his eye pressures went up. With treatment from an excellent Opthalmologist that has improved. His joints are all fine except for one knee that plays up and he treats this with Magnesium spray. He is still on prednisone 7.5mg and Sulfasalazine. We are currently on holiday in Australia. After his episode in May June, he lost 36lbs in weight due to the Anaemia. He is back to normal and in August was able to Snorkle in Hawaii. That’s how dramatic the recovery from May June episode was, on the Serrazime and increased Minocycline. He takes the Minocycline alternate evenings and Probiotics – 50 billion and S Boulariddi MOS in the mornings. He has always taken digestive enzymes with meals. It’s one year since he started the Minocycline Sulfasalazine combo. The Rheumatologist is baffled as to how much better he is even though she was part of the original research into Minocycline back in her student days. Well he is a living example that treatment on Rats doesn’t necessarily equate to treatment on humans.Not heard of this but I think Apple cider vinegar may break down bacterial biofilm. There are a number of things that do this. Including Stevia. My husband has been taking Serrazime by Swansons since May. 40 billion twice a day away from food. He also uses Stevia a lot. But I don’t know if the natural biofilm disolvers work as quickly as the Serrazymes.
Not heard of this but I think Apple cider vinegar may break down bacterial biofilm. There are a number of things that do this. Including Stevia. My husband has been taking Serrazime by Swansons since May. 40 billion twice a day away from food. He also uses Stevia a lot. But I don’t know if the natural biofilm disolvers work as quickly as the Serrazymes.
I’m not sure what you mean. Is breaking down bacterial biofilm a good thing or a bad thing?
It’s a good thing. Check out some of the research on Biofilms. We worked out our own system after reading about Biofilms. My understanding is that all bacteria create biofilm to protect itself I’m not certain that it does release the toxins but If you are taking antibiotics then they will be able to access the bacterium better once the biofilm has dissolved. If you read up on serrapeptase it’s pretty interesting what it does. I tell the Infectious disease Dr what he is taking and he is pretty much okay with it also and is interested in what we are doing. This Dr has been a life saver in my opinion.
I do take a tablespoon of ACV in water a couple times a day. I wonder if it should be close in time to the mino?
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