Home Forums General Discussion Possible Minocin Solution…

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  • #454210
    Calida
    Participant

    Good Morning from sunny NYC!

    I’ve been reading about the Minocin issues here and there, unable to keep up with the boards due to the illness of a family member, but a few possibilities have been dropped into my lap thanks to my problem obtaining quality minocycline.

    My pharmacist owns and operates a compounding facility and suggested making up minocycline capsules for me which would ensure quality. It was a brief discussion so I have to get back to him and ask him about his source of the active ingredient. The benefits would be month to month consistency in obtaining mino (unlike the present, stomach-churning roller coaster ride), clear capsules and a high quality hypoallergenic filler. My AP doc is working on getting insurance approval because I have allergy issues with the commercial generics, probably due to the dyes and fillers. If insurance won’t cover the compounded capsules, the cost will be about $200 a month for 60 capsules.

    Last week my primary, who prescribes my LDN, brought up the topic of Canadian pharmacies because the cost of compounded LDN goes up with each change in dosage (the cost for my husband and I has doubled). I think there are one or two U.S. compounding facilities that offer quality LDN at one third the price so I’m going to check that out before I order from Canada. But this discussion reminded me of the time I ordered meds for my mother from Germany. Her NYC doctor wanted to start her on a medication that was still in trials here in the U.S. so he gave me a script and 3 contact numbers for European pharmacies. The German pharmacy was great. The reps spoke fluent English and I received the medication exactly 3 days after I faxed the prescription. This went on for a few years and the quality and service remained dependable. The problem is I can’t remember the name of the NYC neurologist or the German pharmacy so I have to do some research. The funny thing is, it was for a memory drug…..

    I’ll post here next week to report the details about the compounded mino.

    Another memory popped into my head. My husband read a book called “All the Devils are Here” about the Wall Street/Banking financial scandal. It was about derivatives and other financial details that are outside my interest and abilities but it was basically about how money was made when high risk home mortgages were packaged with student loans and other financial products, sold, repackaged and sold again, over and over and billions were made in the buying and selling process. The initial product was high risk home mortgages but the money maker was risk. Basically white collar gambling. We’ve all heard about the scandal and many suffered from the fallout. This scandal has been modernized and repackaged and the latest version involves pharmaceuticals. The story is the same. Exactly. The same villains found that orphan drugs can be used the same way financial products were used back during the “too big to fail” banking days. The orphan drugs are packaged to sell to the highest bidder, usually through the purchase of whole pharmaceutical companies, and priced to offset the higher risk new drugs that may or may not pay off in addition to guaranteed huge profits from reselling the drugs and/or companies. This is a paradigm shift where the newer drugs become financially profitable before their time (the patent period) thanks to the repurposing of orphan drugs, and a windfall is guaranteed to the buyer and seller. That is, until the music stops, much like the old “Hot Potato” game or musical chairs. When the music stops for the pharmaceutical companies, those “too big to fail” will be bailed out by taxpayer dollars. And instead of an increase in foreclosures, prescription medications will disappear.

    The authors of the book mentioned above, Bethany McLean and Joe Nocera, got their title from a line in Shakespeare’s “The Tempest”:

    “Hell is empty and all the devils are here.”

    Fitting. People lost their homes, 401ks tanked, we lose access to life-saving medications and the pharmaceutical companies are too big to fail. Not to mention the subsidies provided by the affordable care act given to commercial health insurance companies who are refusing to pay for the brand Minocin. We pay $1500 a month for our health insurance and all I got was garbage mino (Apotex) last year that set my progress back to the early days of SD. We can write to our government reps but, in the end, my sentiment is the same as it was when my choice of treatment, the Antibiotic Protocol, was questioned. I know it works. And I don’t have the luxury of time.

    So sorry I digressed, I really need to get out more!

    All the best

    Cali

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #454211
    jasregadoo
    Moderator

    Nicely said! The whole thing is maddening. I’ll be interested to know what the results are regarding your pharmacist’s source for the active ingredient of minocin.

    #454212
    richie
    Participant

    `AS I understand it –you do not have to have the APOTEX– Insurance companies like to make you think that you must order the med on line though their source –this is untrue –

    Fact is you can actually order any generic at your locaL pharmacist -that is why I always advocate using a local independent pharmacist –for example Teva Mylan Watson or solodyn generic are all a better choice than Apotex —
    richie

    #454217
    MLTelfer
    Participant

    Excellent post. Does anybody know if there is a dependable source that explains what is going on with our health system? There is a reason it is the way it is, and there are no black helicopters flying overhead! I know money is at the end of the trail, but how we arrived we are is fascinating.

    Answer this: Antibiotic Protocol….$48/yr for generic mino
    Humira…..top of the line biologic…..$20/yr

    That is with the same health insurance for years and the Humira assistance program.

    I am immensely grateful, don’t get me wrong, but can somebody help me with this math?

    PS. I am NOT a promoter of biologics. They probably won’t last forever and I am going back to AP wiser and better equipped for the battle. Full disclosure however, I DO believe they have a place for those who have serious disease and need to intervene and regroup.

    #454218
    Calida
    Participant

    Good Morning from a grey NYC!

    Thanks jasregadoo, I hope to speak to the pharmacist tomorrow and I’ll be back with the info.

    Hi Richie, I switched to a privately owned pharmacy last year after the Apotex debacle and I still have difficulty obtaining quality minocycline. The pharmacy uses brokers to search for the best prices, as do the major chains, but, as you said, the private pharmacy will place special orders. Teva mino has been unavailable so I called corporate headquarters and they confirmed that minocycline should be back on the market in about 8 weeks (this was about a month ago after a 3 month drought). I spent a full day calling every pharmacy in a 10 mile radius (one phone call per chain) and the only minocycline they had in stock was Aurobindo. Every single answer. It was almost spooky, especially if you’re into conspiracy theories! Phone call after phone call….I made it easy and asked the pharmacists for any generic mino NOT manufactured in India or China. Some said they could order Teva or Watson but when they checked they found these brands weren’t available. I don’t know if the generic manufacturers can’t keep up with demand or they’re creating demand. I found a reputable generic in Germany manufactured by ratiopharm (German and bought by Teva in 2010) for about $32 per 50 caps. I’m going to call them tomorrow to check the cost with shipping.

    It seems that some pharmaceutical companies are looking to make a fortune by repackaging existing drugs rather than developing something new. Over the past few months I read about several “old” drugs that are being rebranded (Resunad developed as a painkiller repackaged as an SD drug, LDN for Crohn’s by TNI Biotech and Campath an old chemo drug for leukemia now called Lemtrada for MS and much more expensive). So much buzz on the boards based on new studies touting a new miracle cure that’s an old inexpensive drug repurposed, rebranded, and too expensive for sick people. Minocycline may be the next “new” superstar miracle drug. My pulmonologist, very active in research, said mino is now being used for traumatic brain injury as well as Alzheimer’s.

    MLTelfer, I don’t have a background in pharmaceuticals, health insurance or research but I do have an opinion as to the problems we’re facing. The U.S. has been the world leader in the research and development of life saving meds and pharmaceutical companies were able to recoup these costs by charging a high (but reasonable) price for the new meds while they were still under patent. Once the patent expires, generic manufacturers rush to develop cheaper versions of the drug and most European countries cap those prices. That works in Europe because many European pharmaceutical companies specialize in generics, not research and development, so they don’t have the same financial investment as U.S. companies. Now that the affordable health care act has created a health care industry more like the European model, health insurance companies seem to be less willing to pay for brand meds so there is less (financial) benefit in developing a new drug. Pharmaceutical companies are looking under rocks for old drugs that were developed by other companies, studied in humans for other purposes and then shelved or replaced by newer, better drugs. I think of it as digging through my attic/basement and researching the value of my grandmother’s old, dusty vanity hoping to strike gold with something I don’t use. Sometimes it pays off. A better analogy might be digging through my neighbor’s attic and offering her $5 for her grandmother’s old vanity.

    Azithromycin is a part of my AP and I couldn’t get Teva zith either last month so the local pharmacy substituted “S” generic. On the surface, it seemed like a good substitution but I called corporate anyway and asked where the zith is manufactured. I think they said Colorado. I asked where the ingredients for the pill were manufactured, they said “that’s proprietary information”. I wasn’t comfortable with that answer. It’s one of several companies I’ve checked out that tell me that putting the pill together in the U.S. with foreign ingredients means that U.S. regulations apply with regard to quality control. That may be true but those of us on AP need consistency with regard to quality and availability and we know that some generic meds are less effective than others. The only way to protect our health is to research the source of our meds and that is becoming more and more difficult.

    Back to the drawing board. I’ll post updates on the compounded mino and German company this week. Thanks for the feedback!

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #454229
    PhilC
    Participant

    Hi Calida,

    I spent a full day calling every pharmacy in a 10 mile radius (one phone call per chain) and the only minocycline they had in stock was Aurobindo. Every single answer. It was almost spooky, especially if you’re into conspiracy theories! Phone call after phone call….I made it easy and asked the pharmacists for any generic mino NOT manufactured in India or China. Some said they could order Teva or Watson but when they checked they found these brands weren’t available.

    Try again, but don’t mention Minocin or minocycline. Ask about Dynacin tablets. Like Minocin, Dynacin is a brand of minocycline. Also, ask about doses other than 100 mg, like 50 mg. Sometimes a particular generic is not available in 100 mg, but is available in 50 mg (and vice versa).

    I found a reputable generic in Germany manufactured by ratiopharm (German and bought by Teva in 2010) for about $32 per 50 caps. I’m going to call them tomorrow to check the cost with shipping.

    I’ve talked about that generic several times in the past. It was previously available in Canada, but after Teva bought ratiopharm it disappeared from the market. 🙁

    Canadian generic minocycline

    Azithromycin is a part of my AP and I couldn’t get Teva zith either last month so the local pharmacy substituted “S” generic. On the surface, it seemed like a good substitution but I called corporate anyway and asked where the zith is manufactured. I think they said Colorado. I asked where the ingredients for the pill were manufactured, they said “that’s proprietary information”. I wasn’t comfortable with that answer. It’s one of several companies I’ve checked out that tell me that putting the pill together in the U.S. with foreign ingredients means that U.S. regulations apply with regard to quality control. That may be true but those of us on AP need consistency with regard to quality and availability and we know that some generic meds are less effective than others.

    Unfortunately, I’ve found that it’s fairly rare for a pharmaceutical manufacturer to reveal where the active ingredients for their products are made. That being the case, I don’t worry about it too much. The way I see it, where the pills are made is much more important. Drug companies have laboratories, and they can (and do) test the raw ingredients that they use to make sure they are of a sufficiently high enough quality. Taking those raw ingredients and making the actual pills is probably the hardest part of the process, which is why I am most concerned about where the pills are made and who is making them. Here in the U.S., FDA oversight helps ensure that the people making the pills are following good manufacturing practices (GMP).

    Phil

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

    #454302
    Boris
    Participant

    Good morning from sunny south florida!
    I’m finding myself in the same position. The relationship with Valiant and Phillidor Pharmacy ended which ended my ability to get the Minocin product this month. I have a couple of weeks to figure it out. Like you Calida, I’ve called about 10 pharmacies in the area for the Teva brand, but no luck. The CVS and Walgreens have Watson only. I would be very interested in hearing about the two options you’re pursuing. I will post any options I find out as well.
    Recently I tried LDN and got it from Skips Pharmacy in Boca Raton. I had no complaints about the process. It appeared efficient. However, I tried it one night and I wasn’t happy with the after effect. My understanding is that its best to work up to the 4mg, which I did not.

    #454886
    PhilC
    Participant

    Hi Calida,

    Did you have any luck getting that ratiopharm mino that’s made in Germany?

    Phil

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

    #454897
    RJR1066
    Participant

    Thanks for starting this thread Calida! Here in the US we know Congress is now investigating unethical practices and price gouging by pharmaceutical companies….case in point: My Brand name MINOCIN in June of 2015 cost me $1097 for 78 pills. I was choking on that. It came time to renew and Valeant Pharma bought out Onset and MINOCIN cost $3900 for 78 pills. I nearly passed out. Since my daughter has played soccer with my Congressman’s daughter for the last 10 years I sent an email to his wife:) I got a call back within the hour. He is asking for testimonials like this. Valeant is considered a ‘bad player’ in the market. Are any of you willing to write? Let me know and I’ll forward the contact information to his aide.

    Thanks!

    #454899
    Calida
    Participant

    Hello dear friends!

    My deepest apologies for being MIA on this topic. As some of you know, I’ve been overwhelmed by family obligations and I’m halfway out my front door enroute to my daughter’s house, feeling very grateful that I’m well enough to be there for my loved ones.

    I did contact the German pharmacy and they no longer ship outside of Europe. I did, however, speak with an English Teva rep and she advised me to email my information to her department and she feels sure they will be
    able to put me in touch with a European pharmacy that can help. As soon as I get this information I will share it with anyone interested in obtaining Teva minocycline.

    RJR, thank you for taking on the fight! Please let me know what I can do. I feel like a foreigner in my own country, unable to get a quality generic. This is a nightmare. I’m presently using Actavis mino and I can feel a difference but the Teva Azithromycin seems to be keeping my head above water.

    All the best,
    Kelly aka Calida

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #454935
    Calida
    Participant

    Hi All,

    I received a reply from ratiopharm/teva’s U.K. headquarters, another dead end:

    “Thank you for your email regarding Teva’s minocycline. Unfortunately this is not a product we market in the UK.

    I will pass your enquiry to my colleagues in the USA as Teva are unable to dispense medications directly to patients or outside of each licensed country. Teva USA maybe able to advise where you can source the medication from.

    You mentioned in your email the symptoms of your disease is beginning to return whilst taking Actavis generic minocycline. This information will also be passed to the Drug Safety team who may wish to contact you for further information.”

    I’m, once again, working on two additional angles for obtaining teva mino and will report back with regard to the results. One I dare not talk about because I’m not sure it’s legal so I won’t discuss it until I know that the process passes muster on all levels. The second angle is connections the medical professionals in my family have that may produce a viable option. I do have the option of getting compounded mino from a privately owned pharmacy but the pharmacist couldn’t tell me much about the source of the active ingredient except that he’s never had a problem with the company.

    In spite of the kind words from the Teva rep above, I’m in regular contact with Teva’s U.S. corporate headquarters and don’t hold out much hope that the email author will have good news about TevaUSA and mino availability. I’ve been told that the mino should be available in 8 weeks several times yet haven’t seen Teva mino since last June and there’s no end in sight to the problem.

    Feeling a bit disheartened but not giving up…

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #454939
    jasregadoo
    Moderator

    I called a local pharmacy here that compounds medication. I was told that they could compound something similar to Minocin for me, but it couldn’t be exactly the same strength (105 mg maybe, instead of 100). It was pretty expensive, more than I can afford, so I didn’t follow up. It wasn’t nearly as expensive as brand Minocin. I did consider it, but at several hundred dollars a month vs 25 a month currently, I decided to stay with what I’m on for now. I’m using the Actavis, just off of Aurobindo. I will ask what my options are every month when I refill, and try to get Ranbaxy again (or the new company), but who knows. Not saying that’s the best brand, but it was working for me, and I’m feeling worse on the Aurobindo. Maybe coincidence, I don’t know.

    #454940
    jasregadoo
    Moderator

    RJR, I would be willing to write. The thing is that I’m not sure how compelling my story would be, as I have never tried the brand name. So I don’t know if I can claim I’m hurt by not being able to afford it. But I would happily state that the price of the drug is too high, and studies were only done with brand name, and we would certainly like the option of being able to buy it!

    #454958
    Denyse
    Participant

    I have a compound pharmacist who has done up capsules for me and together we slowly worked out a capsule that would suit my needs till i could get brand again. I was on a quest to find a slow release action like the pelletized, He has tried 3 different slow release additives, basically they are minocycline powder and methylcellulose. They have worked better then any of the generic brands I have tried. I cant remember the exact ratio or what type of methylcellulose he used as we are on our third trial, but a compound pharmacist will work with you for best ratio.

    CANADIAN LIVING IN CANADA
    Diagnosis/ Diffuse Scleroderma since 05/2006
    Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
    Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
    medical MJ
    Current Extras: FIR

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