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Hi. I started taking minocin for my RA for almost 2 months now. Being that I am a nurse and was hesitant about taking the minocin, I asked a doctor from the cleveland clinic what his thoughts were regarding taking minocin for RA. He said “absolutely not”, “don't you know that the minocin can trigger lupus?” “Don't do it!”
Now I am completely frustrated! I don't know what to do. Has anyone who has been taking the minocin for an extended time experienced or heard of anything like this? Any information regarding this would be helpful!! Thanks!!!
Hi 1 2 b healthy,
I've been on Minocin for RA for over 3 yrs, no Lupus here.
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/187.html
There is alot of information on the home page, and the old BB board if you do a search, I'm sure you'll find posts concerning Lupus and Minocin.
Good Luck,
Donna RA/Lyme
Yes it is possible to develop Drug Induced Lupus (DIL) from long term mino. For more you might check this out. http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?articleid=377&zoneid=18ug You will note that the issue is relatively rare, for more info google Drug Induced Lupus. There are approximately 38 drugs that cause DIL and mino is one. You will note that usually when the offending drug is stopped the DIL goes away quickly. I am on mino for SD and am quite willing to take my chances. I guess I would go back and ask your Doctor friend what they would recommend for your RA and compare side effects. Sometimes I don't follow the logic, many teens are on long term mino for acne but I have, like you, been told that I should not take mino in my case for my SD. The risk of DIL is worth it for my complection but not for SD – figure that one out.
1-2-b – Estimates for mino induced Lupus (which is, in fact, not Lupus per se as symptoms cease when the drug is no longer taken) are 1 in 10,000. Have a look at Maz's latest post in her Personal History thread, which covers this topic in some detail. It is extremely rare for this to happen and I would not worry. Think about it: doctors prescribe mino long-term for teenagers with acne. It is one of the most benign drugs around. I have taken it for 6 years (pulsed) with no problems whatsoever. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi 1-2-B….the link that Jeff provided is a good one and this comment really says it all:
“With most of the other drugs, the risk is less than 1 percent that those taking the medication will develop DILE.”
When I have researched this topic, the stats I found on UK studies that were done, said that the likelihood for minocycline-induced lupus is approx 1 in 10000 in the study samples that were used. If minocycline was as dangerous as the Cleveland doc said, then as Jeff pointed out, I doubt very much that teens would be using it longterm for acne. 😉 The doses used in Dr Brown's protocol are actually less than half the dose used in the treatment of acne (unless one is on the Harvard Protocol = 100mg twice a day, which would be the same).
All that said, it is possible to get DIL from minocycline and I can personally attest to that from recent experience (see my Progress Thread – link in my sig line). Needless to say, in spite of my very unfortunate personal experience, I still advocate for minocycline, because it is a wonder drug for many with rheumatic diseases. DIL is very different from the real Lupus (patients with “real” Lupus can and do take minocycline)…the symptoms are similar, but as Jeff also commented, as soon as minocycline-induced lupus is diagnosed through appropriate blood-work, once the drug is stopped, the symptoms clear up very quickly. I'm doing very nicely on doxy now. I just happened to be an unlucky schmuck to get this very rare drug-induced condition. I do think it's important to be aware of this possibility, but the reaction of the Cleveland doc is way over the top and totally uncalled for. It is one of the least toxic treatments available for rheumatic diseases.
No worries, 1-2-B! I find it a bit difficult to understand the thinking of physicians who make these inflated, unrealistic comments and it really does border on scare-mongering tactics. It actually makes me question the motivation behind these sorts of statements. These diseases are frightening enough and the conventional meds are not free of some pretty worrying side-effects….but minocycline is pretty benign by comparison, with possibly the worst case scenario in terms of side-effects from its chronic use being of patients not receiving advice to take concommitant probiotics to ward off candida and/or possible skin hyperigmentation. Incidentally, both of which are reversible, too. It's really a very well tolerated drug, all in all, especially in the lower, pulsed doses Dr Brown used for RA.
Peace, Maz
Maz – you think you are an unlucky schmuck. My wife developed DIL from a drug that is not supposed to cause DIL but it was the only drug she was on and when she stopped her white count went right back up.
[user=21]JeffN[/user] wrote:
Maz – you think you are an unlucky schmuck. My wife developed DIL from a drug that is not supposed to cause DIL but it was the only drug she was on and when she stopped her white count went right back up.
Jeff, so sorry to hear this and thanks for sharing.
Strangely, in my case, my whole blood counts were all perfect….the only one that was off in the few months prior to my DIL diagnosis were my eosinophils, which were actually reading 0. As soon as I stopped the mino, these bounced back into normal range within 2 weeks.
I find this pretty interesting in light of the fact that eosinophils are white blood cells involved in fighting infection, but also one of the control mechanisms involved in asthma and allergy. In fact, it's one of the markers that would confirm a tetracycline allergy. So, although I haven't yet grasped how minocycline might have depressed my esoinophils, I do think it is linked in some way to this reaction and probably one of the markers that would give an advance heads up re: DILE This is something I forgot to check in with my doc about, but will try and remember to bring it up at my next appt, as it may bear relevance for others.
Out of interest, is this the WBC marker that was also suppressed for your wife?
1-2-B, thanks for your reply and so glad you feel a bit more reassured. 😉 It might reassure you further to see an AP doc…do you have a physician listing for your state?
Peace, Maz
Maz, I don't know which marker was low unfortunately. I just remember that her white count was so low the doctor told he to go home and not go anywhere. Within a week the WBC was on the rise and normal in just a couple of weeks if memory serves. She is doing fine presently.
[user=21]JeffN[/user] wrote:
Maz, I don't know which marker was low unfortunately. I just remember that her white count was so low the doctor told he to go home and not go anywhere. Within a week the WBC was on the rise and normal in just a couple of weeks if memory serves. She is doing fine presently.
Thanks, Jeff. If you happen to find this out at some point, would you kindly let me know? Gets curiouser and curiouser.
Peace, Maz
[user=924]1-2-b-healthyagain[/user] wrote:
Thank you everyone! I feel much better after hearing all of your input!!!
How are you feeling since starting? I know it's very early in the treatment but just curious.. Are you still doing 1 pill M-W-F or have you moved to 2x M-W-F? Any herxing?
*You may want to update your sig. 😀
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