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Post by chosen on Oct 13, 2009 17:01:42 GMT -5
Just curious-There are more than a few articles on the roadback regarding routes of administration that say pretty much less is more especially with long standing scleroderma. I've had SD for about 20 years without major organ involvement. So I consider that "long standing" Under the article about routes of administration it said minocycline once daily Mon and Fri only for the first month or 2. Then up it to MWF. But I seem to be the only one taking this approach while most are doing the Harvard method. Am I missing something? Lynn
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Post by steve201 on Oct 13, 2009 21:00:26 GMT -5
well...can't say what the harvard method is...I was taking it twice daily and every day...so...my thinking is your not taking enough to help......
Steve
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Post by chosen on Oct 14, 2009 7:16:10 GMT -5
Hey Steve, Thanks for the reply. I'm new to AP, but my understanding was that 2X every day was the Harvard protocol-based on their research. It's just that my disease is so long standing- Lynn
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Post by jeffn on Oct 15, 2009 18:16:29 GMT -5
I believe that the 100mg twice a day seven days a week of mino is the most accepted dosing for oral antibiotics. That said I have read about people who have problems with that dosage and have reduced their dosage or those who have stated slowly like yourself both with the intention of increasing their dosage gradually. I started with the full dose and did not have any noticeable issues but that was my experience not anyone Else's. You need to do what you are comfortable with.
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Post by Cubby on Oct 25, 2009 13:12:12 GMT -5
For me, it is 100 mg 2 x day.
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Post by grammie on Nov 8, 2009 18:24:02 GMT -5
For me too it is 100mg twice a day.
grammie
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Post by mikana on Nov 24, 2009 15:17:04 GMT -5
My Mike takes mino 100mg 2xday but has not stomach issues. I understand some people have nausea issues. He also rotates with 300mg clindy 4xday.
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Post by Cubby on Dec 3, 2009 15:49:21 GMT -5
MIKANA. I never got the nausea. How is Mike doing? We get questions from people in Texas regarding where to find a doctor who will give the AP. Would you mind giving us the name of the doctor and what city he is working in?
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Post by chosen on Dec 3, 2009 17:57:20 GMT -5
I personally think lots of probiotics heads off the nausea.
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Post by mikana on Feb 9, 2010 10:14:38 GMT -5
Cubby, sorry for the late reply, Mike's AP doctor is located in Lufkin, Tx which is about 300 miles from us. She is absolutely wonderful and is willing to work with a person's personal doc. Mike sees her every 90 days and she prescibes the antibiotics and tests then we give the paperwork to our docs here in Dallas and they re-do and then they send her the results. Some doctors I have been told refuse to work hand in hand with other doctors so we have been blessed with a team willing to work together. Even our dentist keeps in contact with our AP doctor. Oh year, her name is Dr. Rima Kittley. Not sure if I am allowed to give her full name but I am sure it will be edited out if so. I know on the other board I go on we can only us the initial. Hope this helps. We have reccommended her to others in this area and they love her also.
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ewa
New Member
Posts: 2
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Post by ewa on Aug 2, 2011 7:17:18 GMT -5
i hope you can help me.
i have scleroderma. worst affected are my hands - sclerodactyly. my skin is showing classic symptoms and my joints are very painful. walking is difficult, ankles, knees, elbows, wrists shoulders affected. i am pretty much housebound.
my symptoms started just over a year ago. i am 60 yrs old. i have not taken any other medication. i live in spain. i am a british citizen eligible for nhs treatment. my doctor here in spain says there is nothing he can do for me and that i have to go to england to see a specialist. however, i am not fit to travel at the moment because i cannot walk or stand straight and i get easily out of breath.
my dr in spain refused to prescribe anything - washed his hands of me and simply told me to go to the uk to see a specialist.
in spain you can get anything at a pharmacy without a prescription except narcotics.
i have been taking minocin 100mg twice a day for 2 months. there has been no change at all.
can you confirm that the recommended oral dosage is 100mg twice a day. i have come across conflicting advice like 3x per week once a day and 5x per week once a day and that too high a dosage is not always effective.
any help and advice much appreciated.
thanks ewa
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Post by jeffn on Aug 2, 2011 16:04:52 GMT -5
Ewa - welcome. As I noted above I have always been on a 100mg twice a day seven days a week of generic Watson brand. I know some are proponents of the pulse dose but I have no experience with it. I think I would direct you to The Road Back Foundation site and ask this question over there. Many of us here that are on AP are on the Harvard Protocol which is the daily dose of 100 mg twice a day. Actually several of us go to the same doc in Boston. I would also say that two months is not a long time with mino. It may take a while longer to see results although some do see rapid improvement. My digital ulcers began to heal in three weeks of starting AP but the rest of my improvements took longer to appear. As to the standard dose for AP I am not sure there is a universal answer. I am pill only but many begin with IV antibiotics and different docs use different types of antibiotics. It depends on your doc as much as anything. Have you been able to locate an AP friendly doc in your area? RBF may be able to help you with that too perhaps.
What other meds are you currently on and what have you tried in the past?
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Post by nhnancy on Aug 2, 2011 23:51:21 GMT -5
Welcome EWA, I have been on 100 mg Minocyclin 2X a day just for a few months... It takes time. I am beginning to see an improvement. I have facial involvement (I really have it all over) I had awful edema that has lessened. I see a doctor in Boston (same as jeff and others.) would love to hear that you see progress. I am hoping you can find a doctor, there is a book about this treatment..Antibiotic Protocol (AP) I am not sure of the authors, many have improved, gone into remission!!... Hang in there...
take it on an empty stomach about 12 hours apart..don't use milk or dairy products as they inhibit the absorption...(maybe you can have that in the middle of the dosing)..it may cause stomach upset...maybe try ginger ale with it..I hope this helps you!
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Melanie
Junior Member
It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived
Posts: 60
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Post by Melanie on Aug 9, 2011 18:11:26 GMT -5
Welcome, EWA. I started on minocycline 2x a day at 100m last September and after a few months, was getting discouraged; however, I must say, in the last 3 month or so, I have seen a big difference in the way I feel. I don't know if it's the mino or what, but my skin seems a little softer and I just feel better in general. My hands are still stiff and my fingers are hard with thick, thick skin; but other than that I am beginning to feel almost normal again. I don't have much of a cough anymore either. I did have a year of cytoxan, however, which ended in May, so that has helped as well, I'm sure. Good luck to you. Let us know how you're progressing.
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Post by jeffn on Aug 9, 2011 18:49:01 GMT -5
Hey Melanie - so glad to hear of your improvements! It would seem something is beginning to kick in. Hopefully the hands and fingers will continue to improve. It took a while for me too but they did turn around. I will have been on five years in Jan and although I think I am probably about as far as I will get I am still seeing improvements, mostly in the hands. They were my first SD problem and they say first problems are the slowest to improve. Keep up the good work!
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