Scleroderma Information » Scleroderma » Has Minoclycline NOT worked for anyone?
Question:
Hi Walter, Like you, I had to quit soon after starting. I found out that I was allergic to minocyclene…and it made me sooooo sick!!! Lori V – Hide quoted text — Show quoted text – Yes, there is another side to the story. In the clinical trials done for Minocyclene, almost half of the subjects saw no benefit or got worse. But, those are similar to the numbers for all DMARDs. There is no one magic bullet for RA. Personally, I had to quit minocyclene after just a few days. It really tore up my stomach. As with any DMARD, you chose one to try based on your specific characteristics and disease, then see what happens. Walt Hanks I’m just curious if anyone has unsuccessfully tried minocycline for their arthritis. I see many success stories, just seeing if there is another side to the coin! Luna — http://www.itsnet.com/~wdhanks/WaltHP.html Health is: "An integrated method of functioning that balances the physical, emotional, social, psychological, and spiritual dimensions of life while seeking to maximize individual potential in each, and not the absence of disease or infirmity." Walter A. Hanks, C.H.E.S.
Response:
I did the road back minocycline protacol. It did nothing for me, but it might work for you. Also when I first got RA it was thought I had Lyme so I was on intrevenous antiobiotics for 3 months and that didnt work either. Ken Mc
Response:
Diane-Im not certain if I missed it or what, but did you get the test results yet? You have been on my mind. Char Le Fleur
Response:
thanks for asking, char. the cat scan showed a couple of things: a possible cyst on my liver and either a cyst or fatty lipoma on the pancreas or duodenum. i’ve since had an appt with the GI doc who says the liver cyst is "nothing" and who is getting a 2nd opinion on the other before deciding if he wants to do more testing on me. but all in all, it didn’t sound too ominous. of course, there is still no clue why i get the phlebitis. on the other hand, my chest xray showed my heart is slightly larger than the last xray three years ago. guess that’s cause i’m such a great athlete, huh? diane
Response:
Glad it’s nothing earth shaking, but sorry you didnt get off with a clean bill of health. And by the way—I always knew you had a big heart. It comes as no surprise to me. Affectionately char Char Le Fleur
Response:
Hi Luna, I am on minocycline for 2 yrs and it has helped me tremendously I know your question was has it NOT worked and I felt compelled to repined I have written and helped hundreds over this time that have not followed the correct protocols . Since this is not a first line treatment option by many Drs the instructions as to how when and why with this therapy sometimes are not clearly giving to the patient. This may be why some do not have positive results with minocin/minocycline therapy . Also this therapy can take up to 2 – 5 yrs to work fully!! Many have a "herx" reaction which brings on a flare and many Drs discontinue the drug because the assume the patient is getting worse on this therapy!! When actually this is the beginning signs that the drug is working. All therapies will not work on all of us but in my experience (which is limited) I have seen many errors and have had the great pleasure in assisting people in educating their Drs. about these errors. The minocycline therapy has been proven safe and effective by the NIH, Odell and the recent scleroderma study showed promise . It really is not a question of who has it not worked for but rather will it work for you!! Many drugs out there have far more severe side effects then minocin . If minocin works for you then you have avoided this possibility. Good luck it is a tough choice that only you and your DR can decide . Hope you done mind my 2 cents in here just trying to show even another side. Regards,
Response:
Minocycline worked for me for several months, then no longer. I tried it for the second time after a break of about 4 mo. I had a terrible reaction and ended up in the emergency room. – Hide quoted text — Show quoted text – I’m just curious if anyone has unsuccessfully tried minocycline for their arthritis. I see many success stories, just seeing if there is another side to the coin! Luna
Response:
i was on minocycline for a year and a half, and got worse the whole time. HOWEVER, i still "believe" that, at least in some people, there is an infectious cause for some of the rheumatoid diseases. i sitll feel as though i gave up on it too soon (that i should have tried the stronger antibiotic clindamycin, etc) but i just couldn’t tolerate the damage that was being done and needed to seek other options. i know many people who have done very well with antibiotics, however. i haven’t done well on anything as yet, so i’m probably not a very good person to ask! diane
Response:
It didn’t do anything for me. I heard of it here, did some research on it, and thought it was worth a try. My RD said while she didn’t think it would help, it also wouldn’t do any harm, and if I wanted to try it, she was open minded enough to go along with it. So I did, and it didn’t (help), and now I’m not (taking it). Sharon
Response:
Yes, there is another side to the story. In the clinical trials done for Minocyclene, almost half of the subjects saw no benefit or got worse. But, those are similar to the numbers for all DMARDs. There is no one magic bullet for RA. Personally, I had to quit minocyclene after just a few days. It really tore up my stomach. As with any DMARD, you chose one to try based on your specific characteristics and disease, then see what happens. Walt Hanks I’m just curious if anyone has unsuccessfully tried minocycline for their arthritis. I see many success stories, just seeing if there is another side to the coin! Luna
– http://www.itsnet.com/~wdhanks/WaltHP.html Health is: "An integrated method of functioning that balances the physical, emotional, social, psychological, and spiritual dimensions of life while seeking to maximize individual potential in each, and not the absence of disease or infirmity." Walter A. Hanks, C.H.E.S.
Response:
I’m just curious if anyone has unsuccessfully tried minocycline for their arthritis. I see many success stories, just seeing if there is another side to the coin! Luna
Response:
Hey Luna – I tried it twice with no results. ABT has it’s down side too. I know a lot of people claim it’s less dangerous than traditional DMARD’s, but just like them, it all depends on each individual. My RD has seen so many ABT worst-case-scenarios, that he won’t use it. Kitty
no comment untill now