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PostPosted: July 25th, 2014, 12:21 am
by leaflea
So, I just found and old prescription bottle for Minocycline 100 mg to be taken twice per day. I counted and I took 32 of the 60 pills in the bottle. I discontinued taking it because I had a few episodes of "angioedema" -- severe facial swelling and itching and oozing. Nice. I can't say I blamed the Minocycline, but I had no idea what was causing this allergic reaction so I stopped using just about everything including soap. It was awful. I never went back to using the Minocycline although I don't believe it was the direct cause of the symptoms I had, but I thought maybe it had made me more sensitive to the suspected ingredient in a facial cleanser...I believe Rosemary was the prime suspect.

Bear with me. Patience please, I am going somewhere with this. Minocycline is known to cross the blood brain barrier and help with infections in the brain or spinal cord, but is also known to have side effects of the Central Nervous System.

Well, I had forgotten about taking this medication. I was taking it for an acne flare up which I blamed on the stress I'd been under for a few months. The acne was a nuisance on top of everything else and then the angioedema was the last straw. During those swelling episodes I thought I would lose it, it was like my nerves were about to explode. I couldn't even put gas in my own car. Yet, I went to work every day. Completely embarassed and physically uncomfortable.

Now, it occurs to me, I have read a connection between Minocycline and ALS. In fact, in looking back now and researching what I'd read, because I'd forgotten, and at the time I'd first seen the information didn't remember the name of the drug -- until I saw it on the bottle today -- it is my own neuro who is an author of a study!

It was hypothesized that ALS would slow the progression of ALS because it was shown to do so in mice who were given the gene, so researchers knew the mice very well might/would develop ALS. The mice were given the med BEFORE they developed symptoms and they progressed at a slower rate than the mice that weren't medicated with minocycline. Interestingly, Minocycline in humans who already had ALS (not before they developed it), accelerated the rate of progression. So, the hypothesis was proved false in this one study - the exact opposite of the expected response happened.

This has me wondering. My strong fasics (abdomen) were first noticed about two weeks after stopping the Minocycline. The fasics may well have started before, but I didn't pay any attention (eye and chin). My nerves very much felt in "overdrive" when I had the angioedema, like I can't really describe. I felt on the verge of a breakdown and that really is unlike me. So, I'm I experiencing long-lasting side effects of Minocycline? Is this an unusual reaction? Is it permanent? Did it trigger an ALS mimc? I cannot help but wonder if there is a connection. All I know is I really haven't been the same since taking this medication. Was it the combination of the medication and extreme stress I'd been under that made my nervous system particularly susceptible to its side effects? What is the relationship?

Anyone who knows anything about these anti-biotics is welcome to chime in please. Chrissi?

Re: Minocycline

PostPosted: July 25th, 2014, 5:51 am
by Little Lost
Minocycline slows disease progression in the mouse model but accelerates it in human disease

. Firstly in the mice models the drug is given preclinically I.e. before onset of symptoms, in humans it is post clinical I.e. at a further stage down the line. So obviously timing is important difference leading to different outcomes.

Secondly there is recent evidence to say the neuroprotective action of minocycline in mice is lost when coadministered with riluzole. There seems to be some negative drug interaction between them.

So as the initial positive studies in mice were conducted both preclinically and mice were not on riluzole, it was experimentally different from the human studies, so the differences in findings although disappointing can be rationally explained.

I was also on minocycline for years a decade ago, then was moved onto tetracycline as we stopped using it here in uk. I also developed idiopathic urticaria which was eventually diagnosed as autoimmune in origin. I had the face swelling off and on for 2 years It is fine now, but at the time pretty awful.


Re: Minocycline

PostPosted: July 25th, 2014, 10:32 am
by leaflea
Hi Helen, Thank you so much for reading and responding! And also the additional information. It is all very interesting, and I can't help but wonder if it is all connected. It seems a lot of coincidence - angioedema with both of us and the timing of my taking this drug and developing such strong fasics. I am glad I didn't take it longer. Makes me paranoid that I have stirred some dormant disease lurking in my body. Since the initial fasics and subjective feeling nervous overoad, my bfs has gone full blown with tremors etc...basically all of it, always changing and moving for the past nine months with fasics being the least of my concerns. Perhaps the combination of the Minocycline and rather chronic stress I'd been under at the time created the conditions to develop this. I see others in such a world of stress and I wonder how they escape developing bfs? Clearly, not everyone who experiences stress or trauma gets bfs! So, I just wonder what makes us different. Did your long term use of Minocycline "prime" you to develop bfs? How long before developing bfs did you stop taking it? Musing. Thanks again, I appreciate your wisdom, knowledge and time. Leanne

Re: Minocycline

PostPosted: July 26th, 2014, 6:10 pm
by Little Lost
Hi again,

I was on minocycline about 15 years before twitching began. It was for hormonal acne so was a very low daily dose. I was actually on oxytetracycline 6 years ago ( same class as minocycline), when I developed chronic urticaria and facial swelling. Tetracycline can be associated with a condition called drug induced lupus. My urticaria was autoimmune in origin (positive autologous skin test), and I had generated auto antibodies against my own mast cells. I have no proof there was a connection between the tetracycline and my urticaria, but I personally wouldnt risk raking that antibiotic again if I can avoid it. Whole episode lasted 2 years. Although it was constantly itchy, it didn't make me very ill or anything, though I did carry an epipen.

As for my twitching, I have no idea what caused it, one day it just arrived. I had always been healthy and until then not anxious about health issues. I have a few theories but still working on it.

I hear what you are saying about why do more anxious people not twitch. Probably just different genetic make ups environment factors, and social influences combine to determine our stress responses, I.e. we can all make soup (Be anxious) but the flavour ( symptoms), depends on what ingredients ( genetic, social, hormonal, enviro factors) we have in our pots.

I actually don't believe anxiety caused my twitching, but I feel it made me more aware of it.

Anyway better go before I pull out the soup jokes.......waiter waiter there's a fly .......

No we all know that one......what cannibal said to wife made a good pot of soup but I will miss her.

Just being daft

Take care

Re: Minocycline

PostPosted: July 28th, 2014, 12:42 am
by leaflea
Calling all chemists!

In my Facebook Newsfeed an ad for a Class Action Lawsuit for sufferers of "Peripheral Neuropathy caused by Avelox." I found this terribly creepy on many levels...Facebook monitoring my membership in the closed bfs group, lawyers drumming up business through Facebook.

In any case, I had no idea what Avelox is an anti-biotic. I am now wondering if there is any relationship to Minocycline? Any overlap. I know Minocycline is a Tetracycline, but I am wondering if it caused or contributed to my bfs. I have heard bfs referred to as a peripheral neuropathy.

Just a bit suspicious

Re: Minocycline

PostPosted: July 28th, 2014, 5:24 am
by Little Lost
Avelox is a broad spectrum antibiotic belonging to the fluoroquinotene family. Other members include ciprofloxan. It is nothing to do with minocycline which is a tetracycline. I.e. they are not related. Thats like comparing aspirin and paracetamol I.e. completely different drugs with different modes of action. Avelox is bactericidal is it enters and kills bacteria, tetracycline are bacteristatic, I.e. they enter bacteria and prevent them replicating rather than directly kill. Chemical structure is different


Re: Minocycline

PostPosted: July 30th, 2014, 5:32 pm
by Xina535
I'd like to share this page about Flouro antibiotics (Cipro and others)

Scroll to the bottom of the homepage for a link to the FDA website about nerve damage and notes about leviquin and avelox.

If you google Cipro FDA warning tendon you should find another FDA page about how cipro damages and ruptures tendons!

I am not sure what happened to me or why I started all this twitching and other symptoms, but it I had the absolute worst of everything when I was on Cipro and I haven't been the same since. It's listed on my allergy card, won't ever take it again.

Re: Minocycline

PostPosted: July 30th, 2014, 6:08 pm
by garym
Xina535 wrote: It's listed on my allergy card, won't ever take it again.

Me too!

Re: Minocycline

PostPosted: July 30th, 2014, 6:14 pm
by leaflea
I also took Levaquin for repeated courses about 10 years ago and wonder if this "primed" me for this condition as well. As a gradeschooler I took Theophyline for asthma. My neuro specifically asked me if I was taking it, I only answered no, because I am not taking it now but was on a high dosage 30+ years ago. Another "primer" for me I wonder with latent effect? Other things pushing me over the "tipping point?"