Home Forums General Discussion Relapsing due to inability to obtain brand Minocin

This topic contains 43 replies, has 15 voices, and was last updated by  PhilC 6 months, 4 weeks ago.

Viewing 15 posts - 16 through 30 (of 44 total)
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  • #461137
    RJR1066
    Participant

    Hi Phil and all…the MINOCIN merry go round continues. It is so frustrating. I am wondering what people are suggesting now? I started on brand name MINOCIN almost 5 years ago and it worked wonderfully for me. I was able to get Minomycin for a few years from New Zealand when Valeant price MINOCIN out of reach. Then NZ stopped supplying Canadian pharmacies-and limited dispensing to patients with a scrip from a NZ doctor. So, then I began using Aknemin from the UK (dispensed through Canada) and now they can’t get that anymore either. My local Walmart carries PAR and Torrent. What would you all suggest? I have read mixed on both. I’m thinking I should also ask my doc for Zithro just in case…..these generics don’t seem to have the horsepower the brand name had. I have felt wonderful for 3 1/2 years….virtually symptom free except for mild raynauds. It is soooooooooo frustrating the hoops we have to go through! Who wants to slide backwards?
    I appreciate any and all suggestions.

    #461138
    redrock
    Participant

    Hi Phil and all…the MINOCIN merry go round continues. It is so frustrating. I am wondering what people are suggesting now? I started on brand name MINOCIN almost 5 years ago and it worked wonderfully for me. I was able to get Minomycin for a few years from New Zealand when Valeant price MINOCIN out of reach. Then NZ stopped supplying Canadian pharmacies-and limited dispensing to patients with a scrip from a NZ doctor. So, then I began using Aknemin from the UK (dispensed through Canada) and now they can’t get that anymore either. My local Walmart carries PAR and Torrent. What would you all suggest? I have read mixed on both. I’m thinking I should also ask my doc for Zithro just in case…..these generics don’t seem to have the horsepower the brand name had. I have felt wonderful for 3 1/2 years….virtually symptom free except for mild raynauds. It is soooooooooo frustrating the hoops we have to go through! Who wants to slide backwards?
    I appreciate any and all suggestions.

    I’ve been on generic par minocycline for about a month. I have no idea how I’m doing because I’m an asymptomatic CRESTer. It cost me $135 for a 6 months supply, which I guess is not awful, but it’s a GENERIC, and I used to pay $150 for BRAND. I will get a blood test in a couple months and report back. Please keep us updated on your progress.

    #461515
    redrock
    Participant

    Hi folks,

    Well my 3+ month trial of Par minocycline has been and epic FAIL. Lab reports came in, my numbers are just as high as ever. Frankly I could deal with the numbers if that’s all it was, being that I’m mostly asymptomatic, and I even thought, maybe I can just go without any meds at all. I mean, who cares about a 1:1280 ANA and a little bit of Raynaud’s. But alas, then I thought about the deadly serious pulmonary hypertension numbers I had years ago, and how the doctors were talking about Traclear and lung transplants, even thought I had no symptoms….

    So I guess I do have to do something but after years of trying different generics with no success I’m sort of at the end of my rope. I did go to my CVS today and asked about the price of Brand Minocin. I had heard it was no longer being made, but the pharmacist said it could be ordered — at the price of $3000 a month. I asked about insurance and she assured me my insurance would not cover it. She did say I could appeal it but said it would probably be denied.

    I suppose I could try and get my insurance to pay for it. Or would it be better to try and order it from another country? I know there was talk a while back about Canadian Minocin being ineffective? Or was it Canadian generic that is ineffective?

    I’m so confused and beaten down right now. I had years of success and now I’m frustrated and ready to just say to hell with it, I won’t take anything at all and see what happens.

    Any advice at all? Sorry to be such a downer.

    #461519
    lynnie_sydney
    Participant

    So sorry to hear redrock. Hold tight if you can. I know there will be people here who will have some good suggestions for you

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #461520
    richie
    Participant

    Hi Firstly -I would definitely have your pharmacist confirm that he can get Valeant Minocin capsules I think you may be chasing after something that no longer exists !!-Then try to appeal with a strong doctors letter !In the mean time just to let you know I transitioned to minocycline 100 mg capsules by Torrent and doing well-

    #461521
    Lynne G.SD
    Participant

    I have never tried this but know several people doing just fine on zithromax,5 days on then 5 off

    #461523
    PhilC
    Participant

    Even if you could get genuine Minocin, I don’t think it would help much. You were on pulsed dosing for a long time (a bad idea), and the bacteria have probably become resistant. Perhaps, when you first switched to generic mino you were unlucky and started on a weak one, and that gave the bacteria the extra edge they needed to mutate and develop resistance. The fact that switching to doxcycline did not help tends to confirm my suspicions about that.

    I think you should see a new doctor. Now that your situation has become more complicated, your current doctor doesn’t seem to be doing a good enough job of helping you. I recommend that you go see Dr. W in NYC.

    Phil

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

    #461524
    redrock
    Participant

    Sorry who is Dr. W? Can you PM me? Thanks.

    #461527
    Maz
    Keymaster

    Now that your situation has become more complicated, your current doctor doesn’t seem to be doing a good enough job of helping you. I recommend that you go see Dr. W in NYC.

    Phil, we’ve had some feedback that Dr. W. is close to retirement and whittling down his patient load, now only seeing new patients with RA. One person’s feedback does not a solid fact make, so it may be worth checking, but just a heads up on this potential. There is a newly listed dermatologist in NYC, however, who has let us know that he can get pelleted Minocin compounded for rheumatic patients, so for anyone looking for a close match to the original, this may be worth looking into.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461528
    redrock
    Participant

    If anyone else has a recommendation in NYC I would be interested. I did send the email also.

    #461529
    Maz
    Keymaster

    Our posts just crossed in the mail, Redrock….I don’t know where you’re located, but Phil mentioned NYC, so thought I’d just add the info about the new NYC dermatologist (see my post just above yours). I’m happy to talk by phone, if it might help to brainstorm ideas for you?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461530
    redrock
    Participant

    Hi Maz, thanks so much. I’m at work and can’t talk by phone but if you could PM me the name of the dermatologist that would be great.

    #461533
    Maz
    Keymaster

    Hi Maz, thanks so much. I’m at work and can’t talk by phone but if you could PM me the name of the dermatologist that would be great.

    PM sent, Redrock. Hope the new doc might be helpful to you.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461539
    Mycoplasma
    Participant

    wondering if Doxy would be better than the generic mino…seems if mino isn’t working..

    #461541
    redrock
    Participant

    I tried doxy and no luck:(

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