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  • #303023
    elaine e
    Participant

    My husband has been taking mino for a very long time with great success. Until late last year we bought our meds from a local pharmacy here in the states. Because of a change in our insurance coverage we started buying from a Canadian pharmacy, same one that a lot of you buy from. When our insurance deductible was satisfied for the year, I again filled his prescription locally.

    For most of this year my husband has been in a painful flare up. Tried everything in the book but any relief (minor) was temporary. He wondered if he had come to the end of the road with AP. Was tired of the pain and fatigue and ready to give up. As a last ditch effort, we decided changed doctors but the earliest available appt is not until January so we haven't seen him yet.

    In the meanwhile his Canadian supply ended and he started taking the American brand. Both prescriptions were branded and were capsules with pellets inside. A couple of weeks after he started taking the American made meds his symptoms improved and stabilized. His year long flare up has subsided. Swelling and pain is at a minimum.

    There is little doubt in his mind ( not 100% sure about anything) that his problem and solution was caused by the change in meds. We know that the active ingredient is the same. Does anyone know if the manuf. process is the same, do they use the same fillers, is there any difference what so ever between the Canadian version and American? Has anyone else had a similar experiance?

    Thanks
    elaine

    #336403
    mj47
    Participant

    First off…that's awesome news about your husband Elaine!  So happy for you guys. 😀

    I don't have any information about the Canadian brand vs the American…sorry.

    But, I wanted to tell you about a conversation we had w/ my husband's rheumy about generic vs. brands.  He told us that a drug rep told him that one of the drugs that he represented had both generic & brand made by the same manufacturer (can't remember what drug it was).  He said that there was absolutely no difference in the ingredients, the difference lied in the way they mixed the batches.  He said the generic was only mixed in a big mixing vat for like 10 minutes while the brand version was mixed for a half an hour.  This means that the brand version had a more thorough mixing, ensuring that each capsule was more consistent in it's dosage.  The generic pills had the exact same ingredients, but one capsule could be mostly filler w/ a little active ingredient while another could be just the opposite.  This would cause inconsistent dosing, which in AP terms could = herx I imagine.

    I will be interested to hear if anyone here knows about the difference you are asking about.  I wonder if it could be as simple as the time mixing ingredients.

    Again…sooo happy to hear about your husband & I hope he continues to feel good!

    best~
    j

    #336404
    elaine e
    Participant

    Thanks for your reply and especially your support. I know I can always turn to the RBF for help.

    My husband seems to be very sensitive with any changes to his meds. I know that generics work for many people and he is just different.

    When my husband first started AP about 18-20 years ago we were told to buy only capsules with pellets inside. The branded goods and one generic had pellets and all the rest were manufactured with white powder inside. The one generic with pellets was manufactured by the same pharmaceutical company as the branded goods. We followed those instructions and through out the years he has done extremely well with AP. He was playing tennis regularly and jogging 5 days per week.

    About 8 years ago the pharmacy switched him to generic drugs. No one told us. It was like a blind study. My husband deteriorated quickly. My husband needed a walker just to get out of bed in the morning. The Dr. was baffled. He prescribed heavy prednisone to “blast out” the inflammation. Our daughter's wedding was coming up so my husband took large doses of prednisone and was able to make it through the day and walk her down the aisle etc. Then it occurred to me to check the capsules. It had been a very long time since we needed to even think about that. Sure enough they were filled with white powder. I phoned the pharmacy and they told me that when they contacted the insurance company for approval they only would approve generic. The pharmacist then called our Dr and spoke with his receptionist who gave the OK on her own. Never asked the Dr. My husband immediately went back to the branded minocin and sure enough after a few months later he was back to his normal routine. He never recovered to the point where he had been prior to the switch but all things considered he was doing great.

    A while later the pharmaceutical company sold the rights to minocin to a company that makes drugs to treat acne. I held my breath but the only difference we noticed was the price. Our local pharmacy started charging $350 for a one month supply (32 pills per month). This was the negotiated price that the insurance company pays after my deductible is satisfied. The cost of our insurance soared. The cost of the same prescription in Canada was about $55 per month. That is when we started buying minocin as well as our other prescriptions from Canada. We checked the caps with each refill to make sure we had the pellet type. It took a few months of using Canadian drugs before his flare up began so we did not make a connection. Over time the pain and fatigue gradually increased and became intolerable and he started taking over the counter anti inflammatory drugs along with all his prescription drugs. We made an appointment with a new Dr. When our deductible was satisfied we started buying local again. A few weeks later his flare up started improving. All over the counter drugs have been discontinued and the swelling and inflammation are retreating. Slowly but surely he is getting a little bit better every week.

    Anyway, for us it is just a hunch that maybe there is some connection, especially considering how sensitive his is to changes.

    #336405
    Maz
    Keymaster

    [user=1069]elaine e[/user] wrote:

    When my husband first started AP about 18-20 years ago we were told to buy only capsules with pellets inside.

     

    Hi Elaine,

    Just wondering, but during this two decade period of being on Minocin, did your husband at any time rotate out to a different tetracycline (e.g. doxycycline) for a brief period of time for a break?

    Asking really because it is suggested in the RBF literature that a rotation is recommended at 5 or 6 year intervals:

    http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

    Treating Plateaus & Non-Responders

    10. Does the drug need to be rotated? Antibiotic therapy is a long-term therapy, months and years in most, – even for a lifetime in some. After 5-6 years, a patient can become tolerant of an antibiotic. Rotating to another antibiotic even within the same drug class can keep response optimal and avoid plateaus.

    At the same link above, the following may also be relevant:

    15. Are there multiple organisms involved which respond to different antibiotics? This can be the situation in some patients, and using more than one antibiotic can prevent an overgrowth of the untreated organism (e.g. mycoplasma and ureaplasma – mycoplasma and yeast or mycoplasma and strep).

    It sounds like your hubby was a really good responder initially, but it's also possible that late into treatment that a person can become infected with some other organism(s) or experience an overgrowth of an existing, untreated coinfection (as above, including candida in the gut). Lyme is one of those nasty offenders and, as you live in NY, this came to mind, particularly as your hubby is an out-doorsy kind of guy and likes to run. People often wonder how they could get Lyme in the city, but we are all mobile these days, going on vacations. Also, in NYC it's almost impossible to avoid rodents and migrating birds carrying ticks and fleas cross country. Maybe also deer in Central Park?

    As far as I know, Wyeth sold Minocin's distribution rights to Triax (the acne company) in the US and also to Stiefel in Canada. The formula, therefore, for the pelleted brand version should be exactly the same, though the capsule colors are different…two-toned pea green here in the US with one transluscent end so you can see the pellets. Stiefel's brand, however, is two-toned, orange and indigo. Oddly, Stiefel's generic minocycline also comes in the same color capsule as well as its brand Minocin powdered version, so unless the capsules are opened to checked to see if there are pellets inside, then I have heard of people being supplied the powdered version – either generic or brand. It's important to stipulate on orders to Canada: “Stiefel Brand Minocin Pelleted Version Only.” Sounds like you checked this already, so maybe not an issue, but I have to wonder if the different dyes or other raw materials used to make the actual capsules may cause sensitivity in some folk and not in others. Thing is, Stiefel should be producing exactly the same contents as Triax in the US or they will be contravening their brand name distribution rights given under Wyeth.

    Hopes something here might help in your search for answers, Elaine.

    Peace, Maz

    #336406
    Maz
    Keymaster

    [user=76]john h[/user] wrote:

    One of the things that started me thinking about this was the fact that as I have progressed in this treatment, it seems that the expiration intervals on the Minocin I received are getting shorter and shorter.  It makes me wonder if I am really getting older and older drugs from the same original source.

    Hi John,

    John, one thing you can do to be sure you are getting medication that has not passed manufacturer's expiry is to ask your doctor to prescibe in amounts that will allow you to order your antibiotics in the original manufacturer's sealed/dated bottle. Stiefel, for instance, packs their Minocin in sealed 100 count bottles, so you know the pharmacist hasn't split the capsules into smaller amounts and there can be no mistake with the expiry date. The tetracyclines should be no older than 1 year old, because they can cause serious kidney damage if they have expired.

    I wonder if that might help in some way?

    Peace, Maz 

    #336407
    Steven
    Participant

    Elaine,

    I'm not sure if I have any answers for you, but I did bring up this issue a while ago in the thread below:

    http://www.rbfbb.org/view_topic.php?id=2093&forum_id=1

    #336408
    elaine e
    Participant

    Thanks everyone for your replies. I don't get a chance to check the board so often. So far so good, my husband is still doing OK.

    We switched back to the domestic supplier because once our deductible was satisfied our insurance required it. Strange that they would rather pay the higher price. The prescription was just filled and is well within date code.

    We are keeping our appt. with the new Rhumy in Jan and hopefully he will discuss other antibiotics. Looking forward to his help with tweeking our AP. I will make sure to make the time to read up before then.

    Thanks again to everyone. What a great support group this is.

    elaine

    #336409
    richie
    Participant

    Hi-The most informative site for explaining about meds -{minocin particularly} in emc.medicines.org.uk  –its a British pharma site that really explains everything about every drug –Chock full of the smallest details about minocin —

    For instance —-While the branded minocin is 100 mg -it actually contains 116 mg of minocycline hydrochloride –does it make a  difference ?? –possibly —

    richie

    #336410
    Susan LymeRA
    Participant

    Elaine said:”We switched back to the domestic supplier because once our deductible was satisfied our insurance required it. Strange that they would rather pay the higher price. The prescription was just filled and is well within date code. “

    Elaine, you bring up a very important question regarding why insurance companies pay the extortionist prices of medications.

    With all this healthcare debate, I have been asking a lot of questions.  I work in the insurance industry, though not in health insurance.  In the late 1980's, I was a claims adjuster.  I handled a minor auto accident wherein the victim driver had to spend an overnight in the hospital at Univ. of Va. just for observation.  She told me she was not seen by a doctor during her stay and was only given liquid tylenol, yet her bill came to $4200.  That was a lot in the 1980's. 

    I called UVA to find out why so much and was told we received the wrong bill.  That bill was for medicare.  Our bill was only $420.  WHAT???????

    So, I have known for a long time that there is fraud in medicare.  Only since I became ill have I noticed things like the insurance company paying outrageous money for pharmacuticals.   Yet, being in the industry, I never hear any talk against the fees the pharmacutical companies charge.  I thought this odd since I know we Americans pay way more for our medicine than any other country.  Wouldn't you think the insurance companies would complain?    …..but they do not.

    Likewise, as I have listened to the politicians malign the evil insurance industry, (which gauls me good because I know what many of you may not………the state insurance commissioner's office of each state dictates how much premium each insurance company can charge.  They also dictate the coverage an insurance company can or cannot offer)  I have noticed with considerable surprise, a complete silence among the industry regarding this persecution.

    This is not the norm whenever legislation is being considered that will have an adverse effect on the insurance industry.  Normally I will be received letters from the carriers warning me of the impending doom and encouraging me to vote against blah, blah, blah bill.  Not this time. 

    So I have suspected all along that the insurance industry was in on the healthcare scam.  I'm not sure how.  I also wonder if insurance companies and pharmacutical companies aren't somehow married or at least in an affair with each other.

    I have said numerous times that the best way to reduce healthcare costs is to focus on the costs of medical care.  Pres Obama knew this and it was the first step he took to reduce medicare fraud.  He struck a $150 billion dollar deal with the pharmacutical companies wherein they agreed to cut medical costs to medicare recipients and in return, Pres O would not make them do this in the public healthcare arena. 

    hmmm, hmmm, hmmm.  Why aren't we upset at the cost of medicine in our country?

    #336411
    richie
    Participant

    Hi-I agree –the insurance companies should complain —however instead of pressuring the manufacturer they pressure the patient –Case in point –United Health Care sent a letter out about six months ago that they will no longer pay for Nexium on my plan –instead they offered subsitutes –such as axciphex and one other –the aciphex didnt work for me –luckily the other med did –Another case in point my granddaughter  takes an asthma med –the insurance co. decided to call it maintenance and informed that it wont be covered unless purchased through Caremark or CVS ONLY —A bit heavy handed I would say  –Why ??? Caremark administers the drug program for United –and Caremark owns CVS —a very cozy arrangement !!! Hopefully much needed reform will occur !!!

    richie

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