Home Forums General Discussion Zithromax/Azithromycin Success and Dosage?

This topic contains 15 replies, has 5 voices, and was last updated by  redrock 9 months, 1 week ago.

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  • #457808
    redrock
    Participant

    Hello everyone,

    I have CREST antibodies but no other symptoms except when antibodies are high I have very high pulmonary hypertension numbers. To be proactive, I started AP. I was on brand name Minocin for about 6 years with fantastic results (normal ANA, normal pulmonary pressures), but then insurance stopped covering brand Minocin. I went to generic Teva brand and high antibodies returned with ANA test result at 1:1240.

    My doctor suggested I try Doxycycline. Just got ANA test results after 3 months and I’m at 1:1240, so no improvement. Looks like I need to find another med. Doctor had mentioned Zithromax. Has anyone had luck with this and if so:

    1) Generic or brand? I see brand is way out of my price range
    2) Dosage? 250 or 500? Daily? Every other day?
    3) Side effects or other issues?
    4) Anything else you’d like to add, thanks.

    I’m in desperate straits as I was doing so well on brand Minocin and want to get back to where I was.

    #457813
    vinny
    Participant

    I have been using generic Minocycline since 2008. I have had good disease control on TABLETS, but not good results with capsules. The tablets that have worked for me are made by Randbaxy, Par, Minoz and diavaine.

    Psoriatic Arthritis: 250mg Azithromycin M,W,F; 100mg Minocycline TABLET daily; twice daily 400mg Pentoxifylline;100mcg Levotyroxine; 4mg LDN at arise. Have been using some level of Minocycline since 2008

    #457836
    Maz
    Keymaster

    This situation is really horrible, Redrock, and very sorry to hear it. I know of some docs who will go to bat with insurance companies to get the “greedily-priced,” original brand Minocin approved. They can do this by arguing bio-equivalency issues with generic brands and also because Minocin is a modified-released pelleted form of Minocin that can circumvent the GERD experienced by scleroderma patients. People have won this insurance battle with this approach.

    The thing about azithromycin is that some insurance companies will only approve 2 Z-paks (250mg Zithromax tabs) per month, the equivalent of 6 tabs per pak, and this can be true for generic forms of azithromycin, as well. You can call to see what your carrier will cover in advance of filling a script for azithromycin and then decide, based on this, what you can do in terms of daily or pulsed dosing. Azithromycin can safely be combined with doxycycline or minocycline and you may find that Vinny’s idea of trialing a tablet form of minocycline is worth doing in combo with pulsed or daily dosing of azithromycin for a booster. As for dosing of azithromycin, a lot can depend on the type of microbe being targeted and individual tolerance (e.g., mycoplasma doesn’t need daily dosing, but Lyme does). It’s possible that even a non-herxing SD patient on mino will herx on azithromycin, so discussing starting on a lower dose with your doc might be worthwhile.

    Geez…can’t help but be dismayed by what is going on with Minocin and how the refusal by insurance companies to approve continued use a proven, successful treatment is causing such harm to scleroderma patients. There has got to be some comeback.

    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.

    #457838
    PhilC
    Participant

    Hi,

    I went to generic Teva brand and high antibodies returned with ANA test result at 1:1240.

    How much were you taking?

    My doctor suggested I try Doxycycline. Just got ANA test results after 3 months and I’m at 1:1240, so no improvement.

    How much doxycycline were you taking?

    Phil

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

    #457847
    redrock
    Participant

    Phil, same as on Minocin 100 mg X2 every other day for both the doxy and the teva.

    #457848
    redrock
    Participant

    Maz, it is very disheartening. I did call the insurance company and they do max out the Zith but by mail order you can get a 67 day supply apparently, instead of 90 days. I’m not even sure this is going to work as I seem to not do well on generics which are not even that cheap on my insurance plan. The idea of combining meds is worrisome both due to the cost and also because I have already had terrible stomach issues on the doxy.

    The lady at the insurance company did mention an appeal but said it was not likely because what I really would be asking for is that they waive my $6300 deductible. Apparently once I meet that deductible it will be only $150 every 90 days which is manageable. But until then my first prescription for brand Minocin will be $7033.00.

    The other thing I am thinking of is going overseas. Does anyone recommend trying to get a scrip from Canada or New Zealand? Any info appreciated!

    #457858
    PhilC
    Participant

    Hi,

    Phil, same as on Minocin 100 mg X2 every other day for both the doxy and the teva.

    I’m surprised that you’re treating CREST and weren’t taking the antibiotic every day. Whose idea was it to used pulsed dosing? Were you using the same dosing schedule for Minocin?

    Another option to consider is clarithromycin. For comparison sake, look into the cost of sixty 500 mg tablets of clarithromycin, or 180 tablets (a 90-day supply).

    Phil

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

    #457874
    redrock
    Participant

    My doctor prescribed 100 mg x 2 brand Minocin every other day and it worked beautifully for 5 + years. Only when I switched to generic did I regress. Whenever someone tells me randomly (about any medication) that generic is just as good as brand, I tell them my story.

    I haven’t heard of clarithromycin and i will ask, thanks.

    #458080
    karin1013
    Participant

    That is interesting. My mom has pulmonary hypertension. How does AP help it? I would like to let her know. I was on Azithromycin for years 500 mg tu-th-sa. I was in 95% remission from 2006-1015. I had a root canal in 2015 and RA came back :(. I tried clidamycin and minocycline again. It helped a lot. I switched back to azithromycin recentely. I also recently started an iodine protocol for hypothroidism. It seems to be aggravating the RA. I am still on the azithromycin, however.

    #458081
    karin1013
    Participant

    I have bought Mino from Canada before and it was much less expensive.

    #458084
    redrock
    Participant

    I have bought Mino from Canada before and it was much less expensive.

    Is this BRAND Minocin? If so, I would be very interested if you could share your source. I am desperate to get back on it as it is the only thing that has helped me.

    #458085
    redrock
    Participant

    That is interesting. My mom has pulmonary hypertension. How does AP help it? I would like to let her know. I was on Azithromycin for years 500 mg tu-th-sa. I was in 95% remission from 2006-1015. I had a root canal in 2015 and RA came back :(. I tried clidamycin and minocycline again. It helped a lot. I switched back to azithromycin recentely. I also recently started an iodine protocol for hypothroidism. It seems to be aggravating the RA. I am still on the azithromycin, however.

    It depends what is the cause of her PH?

    Here is my story in a nutshell. I had a bout of iritis in 2007. Since this is an inflammatory condition, my doctor ordered an ANA test. My numbers where 1:1260 with the anti-Centromere pattern. I did have an elevated ANA in the past, but never did much about it because I had no symptoms. But these numbers were so high I that my doctor also suggested a test for pulmonary hypertension as the anti-Centromere pattern is associated with CREST and CREST is associated with pulmonary hypertension. Sure enough, a test showed I had moderate pulmonary hypertension (also asymptomatic). I went on BRAND Minocin and was cured. Normal tests. Now that medication is out of my reach and I’m back to the way I was. I started azythromycin (generic) about 3 weeks ago and hoping for the best. I would prefer to find a way to go back on the Brand Minocin if I could.

    #458086
    karin1013
    Participant

    I got it at Buy Low Drugs in Canada. It was pelleted brand name. This was in 2008, I do not know if they still carry it. Worth a try.

    #458096
    PhilC
    Participant

    This was in 2008, I do not know if they still carry it.

    They don’t. The company in Canada that made it discontinued that product.

    Phil

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

    #458110
    karin1013
    Participant

    Oh, I am so sorry about the brand name Minocin. I do not know about her CREST antibodies. My mom has JRA, scleroderma, and RA on her side of the family (her aunts). So I wonder if she does have CREST antibodies, as well. I know she has artherosclerosis of her aorta and hyperlipidemia. She takes high blood pressure medication. If she does have CREST antibodies, than that will help her pulmonary hypertension as well? Thank you for any advice you might have for her.

    As for azithromycin, I have always taken generic. It has helped me a lot. You should look into Clindamycin, as well.

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