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- This topic has 43 replies, 15 voices, and was last updated 6 years, 1 month ago by PhilC.
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October 11, 2017 at 8:49 pm #460835redrockParticipant
Hi folks,
So I’ve reached an impasse with my CREST progress. After about 6 years doing fantastically well on BRAND Minocin, my insurance company stopped covering the BRAND and would only pay for generic. I relapsed on generic minocycline as my ANA numbers went back up to 1:1280. I tried doxyclycline and my ANA did not improve.
I thought I had a solution this year when my doctor switched me to Azithromycin 250 mg every other day. I had a blood test in May and my ANA had reduced to 1:320 so I thought I was getting back to remission, but unfortunately I just had another test and it’s back up to 1:1280. The first test was at Labcorp and the second at Quest so I thought maybe the second one was lab error? However all my other tests came out to pretty much was expected, so I am guessing that maybe I just had a flukey good lab back in May and in fact the Azithromycin is not working for me.
I am seeking advice as to what to do here. Should I try and find Brand Minocin from another country? Does anyone have a source where one could buy safely elsewhere? I apologize if this sounds xenophobic but I have only bought medications in the U.S. and I don’t even know how it works going overseas.
Another question I have, is it possible that the Azithromycin was working and then stopped working due to SIBO? The reason being I am having symptoms that lead me to believe I have some SIBO going on and I’m wondering if perhaps the medication is not being properly absorbed? Or perhaps it is the Azithromycin that CAUSED the SIBO? It’s like which came first, the chicken or the egg, eh?
Any advice is much appreciated. I for some reason cannot seem to check my signature before I post, I don’t see it in settings, so if it comes out incorrect I will come back and fix.
Thanks everyone.
October 12, 2017 at 2:51 pm #460838vinnyParticipantI have never been able to get branded Minocin. Humana had supplied me with Generic tablets, which worked well, but than switched to capsules which don’t work for me. I am currently using generic Minocycline tablets made by Sun Pharma which are working very well for me. They are 100mg Minoz and 90 tablet cost $67.57 with $10 shipping cost. I buy them from http://www.premiumrxdrugs.com My PCP writes the script which I scan and attach to my internet order. I have also bought from http://www.alldaychemist.com at a similar cost. Alldaychemist has a very good reputation.
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
October 13, 2017 at 12:52 am #460841CMS12ParticipantHi Redrock – It is so frustrating what is going on with Minocin. I genuinely believe from my internet research that Valeant is no longer manufacturing Minocin. Could be wrong but when you try to find the medication they no longer list it on their website. So, that means we all have to find which generic works for us. I’ve spent the better part of four years on that search. Teva didn’t work. Watson didn’t work. Yet, it does work for some. Torrent did work for me….that’s formerly Ranbaxy which some here say doesn’t work, but it did work for me. In any case, I agree with Phil….there isn’t a lock on Minocin to remit our disease. You just have to keep searching. When I tried Ranbaxy I could tell within 2 weeks that it was working whereas with Teva and Watson I struggled for several months going downhill before I gave up.
This is really an issue for all of us. I hope others will chime in. I know that Richie had to switch from brand Minocin a few months back so maybe he has some words of wisdom on this.
Cindy
October 13, 2017 at 2:57 am #460843PhilCParticipantHave you been taking Zithromax or generic azithromycin? If you’re taking generic azithromycin, who makes it?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinOctober 13, 2017 at 6:44 am #460844redrockParticipantPhilC it’s generic. The last two bottles were Greenstone. I can try and see what I was on when my labs were better.
October 13, 2017 at 12:40 pm #460845katerParticipantI was on brand for a year before it went south so to speak and been on Teva for 5 years-working great and my sclero is in remission. I also have/had Lyme and myco p so have done clindy IV and some other abx over time. Are you sure it is SIBO and not candida? There is a breath test for SIBO but both those require different treatment. I do know that SIBO interferes with iron absorption so interfering with meds would be a possibility I think . You could try TEVA from Canada but I think any sort of yeast issue also needs to be addressed right away.
Best of luck to you
kateSystemic 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, COctober 13, 2017 at 12:54 pm #460847redrockParticipantUnfortunately Teva didn’t work for me.
How do you know if you have Candida and what is the treatment?
I’ve heard from buylowdrugs.com and what they have is Brand Minocin from the UK by Meda Pharmaceuticals in a pelleted capsule. For one year it would be $653.35 and I’m trying to decide if I should go for it, knowing it’s not EXACTLY what I did so well on before, or if I should go chasing another generic.
October 13, 2017 at 4:57 pm #460848richieParticipantGreenstone is only a distributor –they do not make the generic –I understand that Valeant still says the minocin brand is temporarily out of stock –this is at least 8 months now and I have doubts if they will ever produce —I am now using Torrent which is Ranbaxys product until Torrent build their US plant –so far so good –if things go south I will take PhilC,s reco and try Par —good luck
October 13, 2017 at 5:30 pm #460849PhilCParticipantEven if you could get genuine Minocin, I doubt it would make any difference. I believe that the bacteria have developed resistance to minocycline, possibly because you were not taking the full daily dose. It doesn’t make much sense to me that a person diagnosed with CREST would be on pulsed dosing.
I have some ideas for you, but that will have to wait because right now I need to go pick up a prescription.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinOctober 13, 2017 at 5:37 pm #460850redrockParticipantI would love to hear your suggestions, Phil, as I respect your input, when you get the chance.
October 13, 2017 at 10:17 pm #460851PhilCParticipantTalk to your doctor about switching you from azithromycin to clarithromycin (Stratton Protocol dose: 500 mg twice a day, every day) and adding back minocycline (but with daily dosing). Consider also a higher-than-normal dose of mino. Dr. F. in California has reportedly used 200 mg twice a day of generic mino as a substitute for Minocin.
Here’s the reasoning: Even though antibiotic resistance seems likely in your case, there is a possibility that combining antibiotics (and using higher doses) could be used to overcome that. And if it does work, using an antibiotic combination may help prevent the bacteria from becoming even more resistant.
I also think you should consider seeing an LLMD.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinOctober 13, 2017 at 10:32 pm #460852redrockParticipantThanks for the info. I am seeing the doctor next week and I will ask.
I have already seen an LLMD and I don’t have Lyme.
October 14, 2017 at 10:51 pm #460854katerParticipantHi Redrock
It would depend where you have candida issues as to what to test. It can be anywhere. There are many candida symptom checklists but it is very possible with long term abx use especially is you have not been diligent with probiotics, detox, fermented foods, anti fungal meds and supplements such as Berberine, GSE, Caprylex, Candida combat etc. If you think it is in the gut there are stool tests for it. Hope you get it sorted out soon.
kateSystemic 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, COctober 17, 2017 at 12:20 am #460855Nana47ParticipantHi Redrock. My husband is taking Sulfasalazine and Minocycline. He has improved recently ( Rheumatoid Factor down to 71 from 600 +) when we increased the Minocycline to 200mg alt days. No joints pain or damage. He has Residual chest issues and episcleritis. The main thing I believe if you have resistance is to take Serrapeptase as this removes biofilm and allows better antibiotic penetration. He is taking Serrazyme 40000 x2 twice a day away from food. He also takes a lot of supplements including, Bozweillia, Blackcurrent oil, Hyluronic Acid, L Histadine, Vitamin C. Glucosamine and Condroiton. He has not been tested for any bacteria but after an episode of Bacteriaemia for which he was given IV Antibiotics followed by Levofloxacin his RA symptoms disappeared( over a year ago now) working on the assumption that the prostate may have been a focus for infection – he is also on Pygeum, Saw Palmento, Stimging nettle and Beta Sitosterol. The main thing you must take is Sacharromyces Boulardi and Multi strain Probiotcs everyday away from the Antibiotc. He sees an infectious disease Dr who prescribes the Antibiotic and is very interested in his progress.
October 17, 2017 at 12:43 am #460856Nana47ParticipantBackground information! In May, after being on the above regime since Novemebr last year, he suddenly got Atrial Fib and spent half a day in ER on treatment for that but came out with Azythromycin at my insistence that he needed something for Raised Sed rate, low grade fever and increased White cell count and a cough that had persisted from the previous episode of Bacteriaemia. The Azythromycin helped the cough but then he had this chest inflammation and anaemia. He was very weak and had no appetite and lost 36lbs in 4 weeks. He has had no further Atrial Fib and is not on drugs for that. With the Serrazyme which was started around that time we wondered if he had had a Herx effect as it was 8 months since stating the Minocycline. So with the Drs approval we increased the Minocycline to 200mg Alt days. He was also on Prednisone for the Chest. 20mg now down to 7.5mg. So in four months he is 90% Better.
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