Mino Side Effects Doubts Creeping Up After Reading Some Articles

[aynurrzepa]

Hi,

I know long time, but you’ve all been on my mind and in my heart… I’ve been on mino (brand to start with and then generic and now on a UK brand Meda) for exactly 8 years. I’m doing fine, my ANA since seroconverted a year into therapy, has remained negative. Mild symptoms like occasional Reunaud’s and excessive dry skin formation especially on my hands and feed continue but that’s about it.

So, I’ve been reading these articles and what is intriguing is that with prolonged use, mino is reported to trigger not just lupus-like symptoms but also other auto-immune conditions. It also showed to worsen ALS progression. SE may include dizziness, vertigo and even psychiatric deceases… It can also increased sebum production and acne… Strangely it is used to treat acne by physicians… I also read that in treatment of acne, there are more side effects from mino than from doxy… And new research showed that acne treatment users of mino no longer respond well to it due to antibiotic resistance. On top of that, in articles they state that mino has immune-suppressant properties as opposed to us knowing it as immune-modulating. To me, these are different things as the word ‘suppression’ implies that the treatment of my decease (in my case SD) with mino is effective because mino supresses my immune system and not because it relaxes it by eases it’s work up by directly neutralising the germs that cause SD symptoms (i.e. modulating the immune system).

And then there is a myriad other nasty side effects cited…

I guess I need some reassurance… what if I develop antibiotic resistance of some of these side effect symptoms? OK, I had none in 8 years but…???

Also, what is your take on how it’s reported to actually cause the autoimmune disorders? I have my ideas about it, but would like to hear yours as well, before sharing mine…

Thanks,

Aynur

PS in April I’m moving from the UAE to the UK – permanently ))

[Maz]

Hi Anyur,

I know a lot about drug-induced lupus, because I have experienced it (seropositive) twice, with both minocycline and the beta blocker, Atenolol. There is a genetic predisposition (see FAQs) for DILE, and for those people who are susceptible, they likely have to avoid any drug known to cause DILE. Knowing this, my surgeon for toxic goiter, decided not to use anti-thyroid meds, which are also known to cause DILE. The generally-accepted medical belief is that folks who are predisposed to DILE are “slow acetylators,” meaning they can’t metabolize the drug quickly enough out of the body and it builds up to toxic levels. It is a fake form of lupus, because when the medication is stopped, the lupus symptoms resolve (though labs can take longer to normalize, especially ANA).

If you haven’t yet experienced DILE in the past 8 years and your ANA is normal, you’re likely going to be just fine. I have spoken to folks with SD who have been in remission and using minocycline for 30+ years and they are also doing just fine. Richie, here, has been on mino for 18 years now (?) and he’s also doing very well…in spite of losing access to brand Minocin a year or so ago. Of course, there is always a risk that any medication for SD will cause side-effects, but overall, mino is very well tolerated for long-term use and, if someone is going to have an acute allergy (would be immediately evident) or develop, over time, a hypersensitivity syndrome to tetracyclines, drug-induced hepatitis, pneumonitis, or lupus, this would, for the most part, show up within a year or so of its use. If by some freak of nature, a serious issue emerged much later, one would of course have to stop the medication and try a different class of antibiotics. Weirdly, I seem okay with tetracycline, but it works slightly differently from mino or doxy.

It also showed to worsen ALS progression.

You might be interested to read and watch the video of the story of Dr. Dave Martz who specialized in oncology and hematology. He was slipping downhill fast with ALS, but sought antibiotic therapy for what he suspected was Lyme disease (which can cause all kinds of neurologic aberrations) and he was able to reverse it and go into remission. As a result of his remission, he opened the Martz ALS clinic in Colorado. Regarding your question about “worsening ALS symptoms” as a result of mino…have to wonder if these folks are experiencing a herxheimer?

Dr. Dave Martz – Invisible Disabilities Association article and video

SE may include dizziness, vertigo and even psychiatric deceases…

Not sure what SE is? The uncomfortable dizziness and vertigo vestibular effects of mino are early side-effects that usually pass after a month or so, once the body adjusts to the medication, because it has superior capability for crossing the blood-brain barrier. If you mean pseudomotor cerebri – yes, in some rare cases, some people can’t tolerate minocycline and it becomes evident (usually soon after starting mino) with serious migraine headaches that don’t go away.

Re: psychiatric diseases, minocycline has been studied for schizophrenia and other neurologic diseases, such as MS. Some research has attributed (in some cases) the issue to toxoplasmosis, but there has been a lot of debate over why minocycline works and whether toxo is a causative factor (similar to AP for rheumatic diseases).

A double-blind, randomized study of minocycline for the treatment of negative and cognitive symptoms in early-phase schizophrenia.

In stroke victims, minocycline was also found to prevent further neuro-damage, if it was administered within hours of the stroke event.

It can also increased sebum production and acne… Strangely it is used to treat acne by physicians… I also read that in treatment of acne, there are more side effects from mino than from doxy…

Yes, my daughter suffered from severe cystic acne and tried everything, including minocycline. Like her mother, she had to stop it due to DILE. However, when she started it, the dermatologist told her to expect worsening acne for a month or two. Minocycline was developed in the 1970s specifically for acne, which mostly affects teens who can be non-compliant about dietary restrictions while on tetras (dairy and foods high in minerals, like calcium). The reason it is superior to doxy is because it was developed to have higher lipid-solubiity, enabling it to penetrate the outer lipid layer of cell walls (its bacteriostatic and used for intracellular microbes). This means it can penetrate skin tissues really well…and likely why it is so helpful for SDers.

Ultimately, if someone’s SD goes into remission using minocycline, I’m guessing they likely don’t care if remission is due to the microbial effects or the DMARD effects of this antibiotic! 😉 All in all, every medication has side-effects and, in the case of rheumatic diseases, one is faced with an array of treatment options and it is a bit like “picking your poison.” Relatively speaking, minocycline is one of the more benign medications out there for acne…benign enough to be prescribed for decades in the case of acne in youngsters. In fact, Accutane, which is not so benign, has been studied for triggering serious gut issues, like colitis.

When some folks reach sustained remission, they will sometimes revert to doxycycline or lower their mino dose to a “maintenance” dose. While this has worked for some SD folks, it’s not the case for everyone and is a case of trial and error. What dose are you taking, Anyur? Have you tried lowering to a maintenance dose to see if any symptoms return?

I don’t want to diminish any concerns about side-effects, because they can and do occur and have been reported here. However, on the whole, after doing years of research, I find it’s prudent to question every research conclusion, whether there are positive or negative outcomes of a study. Questions include things like possible conflicts of interest or just how the opening hypothesis is stated…is there researcher bias, incomplete data or deficits in data analysis? Bottom line is that “nothing” in science can be proven – only disproven – and what we all accept as “proven” in medicine is merely contemporary accepted beliefs systems, as there are always exceptions to every rule. Serious side-effects can sometimes occur with minocycline, but after being around here for the past 11/12 years and speaking with much older “old-timers,” there is a risk-benefit ratio every person has to consider and, for those choosing AP, the risk for potential serious side-effects in terms of frequency of occurrence don’t seem as risky as some other medications…but that is just my lay-person’s two cents.

[vinny]

I was able to stay off Minocycline to verify that it was the cause of my low blood counts. My ANA’s were negative for lupus. After 2 weeks I was back in unacceptable pain and am now back on daily Minocycline. I added Plaquenil which is used for both psoriatic arthritis and Lupus. I also have Doxycycline available and plan on trying to ease back on my Minocycline dose if my next blood count is low. I am taking the Minocycline with supper, but was taking it at bedtime when my blood count was low.

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[aynurrzepa]

Thanks, Maz, as always – a great response, addressing all areas of my concern… I will surely watch the video.

I’ve halved my dose to 100 mg once daily with Dr.S. advice in 2011 and I had been fine. For a period of time, about 5-6 years ago, I could not get my mino in time and I took doxy for some time and was also fine. I then went back to mino.

I was also suspecting herxhing as the reason for 1 – autoimmune deceases besides lupus appearing in patients taking mino for other reasons(so, instead of stopping, they probably should have continued!) and 2 – the ALS patients “worsening”…

SE = side effects. And you already answered my queries, thanks )))

So, basically this is the sort of reassurance I needed. I have assumed the full responsibility over my choices, having chosen this therapy over others or doing nothing at all. I was sort of OK before starting it (though in pain with my fingers, other issues but I thought I could cope), but once I had my kids I wanted to make sure I actually remained OK and started the AP as the guarantee. My symptoms have improved greatly, I’m almost 99% normal person and I believe if I continue with mino, I will avoid symptoms worsening with aging – something I was afraid of before I started the AP. In fact, so many other things have improved that I only later linked to SD and me taking AP… it was like a pure bonus for me! My thoughts now are, from time to time: “maybe I would continue being fine and did not have to put myself through taking antibiotics…, but then, maybe I would not always be doing “fine’, as in pre-2010, and I would have regretted later (e.g. post-menopause) should I have chosen not to start the AP…” So, your support has helped greatly to swing back into the “confidence” zone – thanks!

And, you also helped me with the updated info on research etc. Yes, fully agree – the traditional science often hypothesises using wrong postulates to start with… of course, their findings will be skewed as well!

Keep well!, Maz! I will try to visit here more frequently. Love to all,

Aynur

[aynurrzepa]

Hey, Vinnie! So nice to hear from you xxx

Thanks for the info – I don’t even want to think of the possibility of my SD symptoms coming back and possibly stronger… And what if they get much worse?! And I would not be able to go back to my “doing fine” state? Horrifying thoughts… Wish you well with your low blood count… Look after yourself! xx

[richie]

I take 200 mg daily of minocycline since 1999 –except for some skin darkening and minor discoloration on ankles no other effects -my SD is still in remission -I still take the mino to prevent relapse —good luck —richie

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