is there help on this forum ?

[lov4life]

To all the wonderful people here @ The Road Back:
My persistence here will eventually pay off, or I would stop trying. This is my only hope of finding an answer to my many questions so HERE GOES again…

First of all I would like to say, AM I THE ONLY ONE WHO IS CONFUSED HERE?

Judging my the numerous posts, I stand in a crowd of anxious hopeful people that all hope that this BB will solve some of the mystery surrounding the generic versus brand name Minocin…I have never seen so much conflicting information in one spot before.
Is it possible to compile all this info in one spot and have a special section on this website dedicated to the subject of
HOW DO WE SOURCE MINOCIN, regardless of what country we are from? It seems like the volunteers must spend countless
hours repeating and repeating themselves in regards to the questions surrounding this subject. Wouldn’t it be helpful if we could all be pointed in the same direction, instead of helplessly forging on. MAny of you have researched this subject thouroughly but where do we have access to this info????? Entering this BB is like going in a lybrinth…I am dizzy with info but
I never really get to where I want to go….Can anyone help me??

I have had a mind boggling time trying to source Minocin and the only reason that I continue on, is because I KNOW IT WORKS.But how does a NEWBIE work their way through all this info?? We need actual info…we need facts…without it, we are like vehicles with no steering wheels. We want to obtain health and wellness but we cannot govern our health without education.

My questions for anybody out there tht cares to listen>>>

What is the FDA orange book and how do we use it as a info tool??

What role is the NBC number in finding the Minocin??

I found a company in Canada that claims they have affordable access to Minocin MR..the company is

http://www.canadadrugs.com/prescription/product/Minocin+MR+100mg/15182/
and the drug is distributed by Meda Pharmaceuticals,from UK..
Is this the WONDER DRUG??

Another company Value Pharmaceutical says they can source Minocin but it is called Cynomycin, made by Cipla, in India
96 capsules for $139.50 for the 100mg pills…

Another source says Wyeth distributes the brand name drug available in Mexico?? This is in tablet form, not the pellitized version.. Is this a good option ??? what is the difference between all these companies that are marketing Minocin/Minocycline/Cynomycin/whatever ???????????????????????????????

Could someone please help me and the hundreds of people who are dazed, confused and wanting information??

I wish you all a blessed and wonderful day. May you all be richly rewarded for your help towards the seeking, tormented RA sufferers who have no repose but this bulletin board !!!!!!@

Jacqs

[Lynne G.SD]

Hi Lov;
There is such a site and it is on Rheumatic.org. Harald is the guru of all things “mino” Here is an example.

Dear Group,

When Thomas McPherson Brown, MD, did his ground-breaking word on the
use of Minocin to treat RA, only pelletized Lederle brand Minocin was
available. He found that 100 mg MWF was a good sustaining dose and
that patients could use higher dosages to get started. The proof that
the Minocin was working was the onset of a Herx reaction, during
which arthritic symptoms temporarily became much worse.

By the year 2000, generic minocycline had become available in
powdered form from a number of sources, and even pelletized Lederle
brand Minocin was available with a generic label for only $70 for one
hundred 100 mg capsules. However, Dr. Mercola warned, “Most all
generic minocycline is clearly not as effective [as the brand name to
treat RA].”

Regrettably, pelletized Minocin is no longer available in North
America except from one source, Triax Pharmaceuticals, which is
charging over $1,000 for one hundred 100 mg capsules. Even if
insurance agrees to pay for the Triax, co-pays can be quite high.
There are are versions of pelletized minocycline on the market, such
as Aknemin and Minocin MR, but there is no telling how close these
are to the original Minocin.This situation has created a lot of
stress, anxiety and correspondence among our group.

Dr.F of the Arithritis Center of Riverside has been a
proponent of the antibiotic protocol (AP) for RA since his days in
medical school, and has extensive experience in that area. His
experience has shown that powdered, generic minocycline is only 40%
as effective as the original brand name Minocin. To achieve the same
therapeutic results, his solution is to prescribe generic, powdered
minocycline, but in a 1 / 40% = 250% higher dosage. For example,
instead of having me on 100 mg on brand name Minocin on MWF, he has
me on 300 mg of generic powdered minocycline by Ranbaxy on MWF. I am
now in remission. Other manufacturers of minocycline, such as Watson
and Teva, should have worked as well.

I asked Dr. F how he came up with the 40%. He stated that he has
found that he has to increase the dosage of generic minocycline
correspondingly to produce the same Herx reaction as the original
dosage of Minocin.

My personal advice? Stop fretting about the loss of brand name
Minocin. Instead, ask your rheumatologist to go for a higher dosage
of generic minocycline. Expect continued healing, and expect
cooperation from your insurance company with only minimum co-pays for
a tier 1 generic.

Sincerely, Harald

At 12:37 PM 2/5/2012, Cooky wrote:
>
>Yes you can get brand name in the US and if you have insurance other than
>medicare it should be covered. I take the generic and do not take extra
>doses. I take 100mgm 2times a day MWF.
>
>cooky
>
>From: rheumatic@yahoogroups.com
>[mailto:rheumatic@yahoogroups.com] On Behalf
>Of Martineson@aol.com
>so, pelleted, brand name Minocin is available in the U.S., just terribly
>expensive? I need to knowwhat to tell my rhemy in a couple weeks. I’m down
>to my last brand name pills this week and will start with generic, once it
>arrives. I think I need to take more of the generic, from what I’d read
>earlier, right? Surely don’t want to relapse when I’m still struggling to
>get into remission! 100 mg every other day seems to be about right.
>Karen

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[Maz]

@lov4life wrote:

Wouldn’t it be helpful if we could all be pointed in the same direction, instead of helplessly forging on. MAny of you have researched this subject thouroughly but where do we have access to this info????? Entering this BB is like going in a lybrinth…I am dizzy with info but
I never really get to where I want to go….Can anyone help me??

I have had a mind boggling time trying to source Minocin and the only reason that I continue on, is because I KNOW IT WORKS.But how does a NEWBIE work their way through all this info?? We need actual info…we need facts…without it, we are like vehicles with no steering wheels. We want to obtain health and wellness but we cannot govern our health without education.

Hi Lov4life,

Believe it or not, RBF volunteers share your frustrations! RBF is a foundation that relies upon patient donations for the upkeep of the website and to ensure it remains in existence to support those looking for AP docs and education about the therapy. RBF can’t specifically provide info about brands or generics. These tend to change over time, as patients are now experiencing with the Canadian Stiefel brand supplies, and as there are folk visiting from all over the world, it’s an impossibility for lay volunteers to keep up with what is available in every country and where. This, unfortunately, has to remain in the realm of patient responsibility. There is a patient who has created a website with as much current info as he has been able to collect here:

http://www.tmgp.com/minocin.htm

However, RBF volunteers and its board of directors are in complete agreement with you about the website. It was first designed over a decade ago by lay volunteers who were doing their best at that time with the limited resources they had to bring AP to the internet. This had important advantages that I’m sure everyone can appreciate, but it also meant that it became a wonderful “free” source of info for those seeking answers and RBF no longer had to send out hard copies of all the info for a charge. In the old days, this was how RBF was able to stay afloat…people “paid” for the info and they also “paid” for the Intercessor newsletter subscription which is also delivered to subscriber email in-boxes in free news-ebulletin today.

This means that RBF relies solely now on the kind and generous donations of patients who are grateful we are still in existence, doing our best to maintain AP Provider lists, and keeping AP alive as a treatment option. We do, however, have plans in the works to make the website more current and navigable. It is a HUGE task, as you might imagine, because, as you have commented, it is now a maze of information and very difficult for newbies to find the info they need right at their fingertips. RBF is starkly aware of this issue and is more than keen to get the site cleaned up. This will cost thousands of dollars to pay a contracted webmaster and hundreds of volunteer hours. The first step cost the foundation many thousands to just update it from the old computer language to HTML, which was a first step to transferring the site into a new working template. This was deemed at the time to be less costly than starting afresh. So, RBF not only needs funds for this project, the foundation needs computer-literate volunteers who are willing to donate their time and to work in a committee setting to get underway with this project.

In the past couple of years, there have been other unexpected outgoings that were urgently needed to update the discussion forum to two different softwares that have set back the website update plans. The original software had become “leaky” and was enabling hundreds of spambot posts through that were taking volunteers countless precious hours to delete. The second software also became unstable with some equally challenging issues and so it had to be changed and upgraded again. All this took valuable funds away from the hoped-for website project update.

So, we really do appreciate your frustration, because on the administrative side of RBF, there just aren’t the level of donations flowing in as were seen in the past (though numbers visiting RBF for help have increased exponentially) and the foundation is also in need volunteers with specific skills, such as computer literacy and editing and researching skills, to help refresh the website into a contemporary, clean, easily navigable site.

One great project Lynnie has been working on is to put together a FAQ section with as much current, reliable info on antibiotic protocols for APers as possible. This will enable newbies to click on a commonly-asked question and find answers quickly, without having to repeat questions here on the forum. This will also free up much volunteer time. This project is about 2/3rds complete, as we speak, but you will appreciate that volunteers are just volunteers and not full-time paid employees, so we are not working to deadlines and doing our best to get projects completed as free time permits.

In terms of questions on brands of mino, which I think you are mostly wanting to discover answers, your best bet is to ask here, because it is the patients who are using different brands/generics who can provide the most current answers. The foundation doesn’t take on this responsibility, as mentioned, and it is something that is more in the realm of something to discuss with a treating physician. Minocin, made by Wyeth and distributed through Triax, was the original pelleted brand that was used in the MIRA trials and is still available, but costly here in the US. As for other brands and generics, every patient will have a varied experience as to efficacy and so there is no straight answer on which will be optimal in every person’s case. It remains a question of trying a brand or generic and seeing what works, bearing in mind that delivery (slow release as opposed to immediate release), capsule dyes and fillers may affect some patients and that generic potency may vary (20% variance either way is permitted by the FDA).

Thanks for bringing up this subject, Lov4life, because if you are questioning these issues, then others will no doubt be questioning them, too. Bottom line is that RBF’s mission is about providing educative materials about the rationale for using AP, but not specifically which brands or generics a person should be using. This is something that is usually left for discussion between patient and physician and patient-sharing of info here on the forum.

If anyone has special skills that could help RBF, please consider donating your time to these ends, and also sending thanks to anyone who has already sent financial support to the foundation or is thinking of doing so, so that volunteers can get on with the task of providing current and future rheumatic APers with a new and improved website experience.

I hope others will chime in for your other questions, Lov4life. I will be away from Thurs to Sun and then again from the 23rd to 29th for a long-overdue vacation. And, thanks again for bringing up these questions, as it brought up an opportunity to reach out to those visiting the site to ask for their time and support, as we all are so dedicated to serving those who want to make a fully-informed decision about choosing AP. 🙂

[PhilC]

As far as I know, the closest thing to Minocin (the capsules) is Aknemin. As for Minocin tablets, there isn’t a lot info about them available, and not enough people on here have taken them to be able to say how they compare with Minocin capsules.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[richie]

Hi–Source minocin –its not really such a mystery –first decision pelleted capsule which is made by Triax in the US –no longer made for Canadian market –THERE IS NO OTHER PELLETED CAPSULE MADE –so next decision is does one buy the American brand which is extremely costly or does on use a quality generic –there are a fair amount of generic producers that have excellent reputations —Teva and Watson are two that come to mind —-Sourcing minocin or minocycline is no big thing -MInocin pelleted brand is very costly –if you can handle that -then its no problem –if you want the generic thats no problem either –its readily available at any pharmacist !!!!!!!!!!!!!!!!!!!! Richie

[kater]

Hi Maz, Lynnie and volunteers
thanks for jogging my memory about the donation. For my birthday I asked everyone to donate 5$ in lieu of gifts. I was/am feeling so grateful for the support of The Roadback Foundation and all its devoted volunteers, and all the other people who put so much of themselves into this journey to health–you all log an awful lot of long hard hours on here. I do too just merely reading through it all! I wish I could donate more than this 50$ but as you know the medical and healing expenses hurt just about as much as the illness. Just a small token of my appreciation. I will move it off my dresser and into your account tonight! 😛
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Maz]

@kater wrote:

thanks for jogging my memory about the donation. For my birthday I asked everyone to donate 5$ in lieu of gifts. I was/am feeling so grateful for the support of The Roadback Foundation and all its devoted volunteers, and all the other people who put so much of themselves into this journey to health–you all log an awful lot of long hard hours on here. I do too just merely reading through it all! I wish I could donate more than this 50$ but as you know the medical and healing expenses hurt just about as much as the illness. Just a small token of my appreciation. I will move it off my dresser and into your account tonight! 😛
kate

Kate, I am sure you will receive a formal thank you for your donation when it arrives to the foundation, but just saying a fellow-patient “thanks so much!!!” for your very generous pledge. 😀 I know I can’t be alone in being so moved by your request to friends and family to donate $5 each in lieu of your birthday gifts this year. Your donation will be helping others with scleroderma to find this life-saving treatment and what a kind-hearted way to pay-it-forward! Many happy returns of your special day and wishing you blessings of health and happiness! Happy birthday!

[Mazensmummy]

Just looking at that link you posted Maz, I am so shocked how expensive brand name Minocycline is in the USA? 😯 I buy Israeli brand name Minocycline 30 x 50 mg capsules for 30 shekels and it seems to be working fine? Although it is in capsule form not pellet. I hope it’s not too expensive when I go back to Australia. 😀

[PhilC]

@richie wrote:

Hi–Source minocin –its not really such a mystery –first decision pelleted capsule which is made by Triax in the US –no longer made for Canadian market –THERE IS NO OTHER PELLETED CAPSULE MADE

Aknemin is pelleted. Although it is made in Germany and not readily available in North America, at least one Canadian pharmacy apparently knows how to import it and is selling it.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[fastspinW]

Whoops! I am ashamed to admit that it has never until now occured to me to make a donation to this wonderful site…blush, blush! And this dispite the fact that I have more than once written posts saying how grateful I am to be able to get so much wonderful information here, both from the hard working and incrediblly dedicated volunteers, and from fellow suffers like myself who wish to let others benefit from their personal experiences. While I am currently not working I should be able to scrounge up at least $50 and I will mail in a check within the next day or two.

And once again I would like to thank everyone on this forum for being willing to lend a helping hand to those in need of it. What more fitting tribute to the power of the human spirit than people helping one another out of a desire to ease their suffering and improve the quality of their lives!

Thanks!,
Winston

[Maz]

@fastspinW wrote:

While I am currently not working I should be able to scrounge up at least $50 and I will mail in a check within the next day or two.

Winston, you’re a treasure. 🙂 I’m the one blushing here.

Volunteers prefer to resist mentioning “donations” on the forum here, knowing that the folk who are visiting are sick, searching and often paying out of pocket for their AP docs and can’t afford to dig deeper into their pockets. An unfortunate irony, though, is that when people are well and working again, they no longer visit the forum and they move off to put their disease behind them, happily and, naturally, forgetting RBF and preferring not to revisit the pain of illness by writing a testimonial. There are so many ways to donate to RBF, though, if money is a factor…so if anyone has special skills they can offer, please let one of the volunteers know. If you’re in remission, please send us your testimonial!

Very occasionally, the donations come in from deceased patient’s loved ones, many long years after they had gone into remission and led a full, healthy life. The new generation of volunteers has no idea who these old APers were. Cheryl wrote a beautiful piece in an eBulletin in our one fund-raising drive in 2010, which is well worth the read if anyone didn’t catch it, called “Celebrating Life, Not Just the Memory”:

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

Thanks, Winston. You’re always the consummate gentleman with a very generous heart.

Now I really have to skidaddle and get moving….off to VT for my daughter’s swim champs this weekend!

[Krys]

@Ruffian wrote:

…but if the button is here…it’s easy to do …

I myself would be very grateful if there was a button (even a tiny, inconspicuous one. How about a heart shaped one with “donate” within the heart?) somewhere at the main page of Discussion Forum. I would love it!
I’ve been reading the forum for the last 2 years and each time I remember about donations I am away from the computer, and each time I am “present” at the forum, I do not remember about the donations. 😳 😳 😳

@Maz wrote:

Volunteers prefer to resist mentioning “donations” on the forum here, knowing that the folk who are visiting are sick, searching and often paying out of pocket for their AP docs and can’t afford to dig deeper into their pockets. ….

I’ve been very touched about generosity and greatness of spirit of our own group of angels: precious volunteers on RBF. I figured long ago that the reason for the absence of “donate” button above or under Discussion Forum was the result of huge generosity and gentleness, just so as not to make anybody feel less than welcome.
The main RBF site does have this button, but for people like me, a button at the Discussion Forum would be priceless!
I would be able to afford an occasional donation if only I remembered about it!
Maybe I’ll place a heart shaped sticker on my computer screen and write “donate to RBF” inside. 😆

Maz, thank you so much for your beautiful post!

Warm wishes, Krys

[Rose]

Maz, I’ve tried to send you a private message three times and it has come back that the “users I’ve requested does not exist”. I wanted to ask when was the last time I sent in a donation, is there a record somewhere? This site means a lot to me, helped me more then any of my Rheumatologists, Rose

[danho]

Hi Maz,
I did not post messages here very often, but I enjoyed reading your comments and as well as other folks. Anyway, thanks for reminding me about donation. I made a donation through the web yesterday. As Ruffian suggested, it would be helpful if PayPal is available for this site. Dan

[vera]

Lov4life,

I sent you a response to your PM, but had a bit of trouble (I’m not a computer whiz 🙄 ). If you didn’t get it, PM me again.

Lori

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