Did anybody get side effects from long term usage of minocycline

[Patti D]

I know we have talked about the hyperpigmentation from usage of minocycline as well as the GI upsets but what about other stuff.

I had my anual pap test and my doctor muttered something under his breath about how if your feeling so much better we need to get you off of those antibiotics.
Kind of made me re look at side effects and found one study of animals who developed thyroid tumors from minocycline.
The only things I can say is I continue to have a two year old rash on my leg and continuous thyroid nodules. There is brusing on the back of both legs(hyperpigmenation) and now recently someone told me I had dark circles under my eyes.I honestly thought I looked”pretty good” for feeling so good other than this fatso I have become(40 lbs total) Yikes I can start anytime now exercising!!!

I am probably going through some crazy worry scenario right now but I have been on mino for 2/1/2 years. I was also on doxycycline for 1 month around 3 years ago for lyme treatment.

Could everyone just chime in here and tell me the side effects they have encountered when they have been on antibiotics for over 2 years.

Just need some reassurance that this will be ok . I am thinking of asking my doctor for diflucan just to ward off any fungal infections. But thats another drug, more side effects yada-yada!
Thoughts folks!

Thanks all!
Patti

[Maz]

[user=287]Patti D[/user] wrote:

I am probably going through some crazy worry scenario right now but I have been on mino for 2/1/2 years. I was also on doxycycline for 1 month around 3 years ago for lyme treatment.

Could everyone just chime in here and tell me the side effects they have encountered when they have been on antibiotics for over 2 years.

Hiya Patti, my merry isthmus cysta! :roll-laugh:

I think the thing is that every drug will come with side-effects used in the long term. The question is, which drug is least likely to produce the worst ones? It sort of comes down to a risk/benefit ratio with all this. There are some folk who have been on AP for several decades and no worse off for that…they've sustained longstanding remissions and, if they have some hyperpigmentation, for instance, it's just a nuisance factor, relatively speaking. That is, better to have some benign hyperpigementation than to risk relapse. I have to be honest with you….I would rather be on longterm antibiotics than longterm pred or methotrexate, having seen what these drugs have done to my MIL for her PsA and AS. :crying: At 79, she is having repeated toe joint infections (fungal and bacterial) and has been close to amputation a few times…neither drug has prevented joint damage, just palliated her symptoms in increasing doses over the years.

Some Lymies are on heavy doses and combos of antibiotics for years and, as long as they take care of gut health and prevent candida overgrowth, they're fine. I am…I've been on heavy doses for over 3 years now and very near to remission. When my doc feels I'm ready, I plan on remaining on a low, pulsed dose indefinitely, as I just can't chance relapse and going back to that dark and pain-filled place I was in at the beginning. You've been so fortunate (okay, “fortune” is relative!) to do so well on just minocycline as a chronic Lymie!!! :dude:

In my case, I had the thyroid nodules before beginning AP and my guess is that they were triggered by my chronic Lyme. Brown felt that nodules in the body were the body's way of encapsulating infection…he mentioned strep in this scenario and nodules being more common in folk who'd had recurrent strep in their past health history. Hashimotos has been tied to yersinia enterolcolitica, too, with the treatment suggested being doxycycline…so I'm not worried about antibiotics harming my thyroid, but possibly even helping it. 😀

Probably the worst (common) longterm side-effects of minocycline are hyperpigmentation and candida overgrowth, leading to leaky gut and increased sensitivities to certain foods and re-circulation of toxins. Therefore, rather than risk relapse by stopping abx altogether when I hit remission, I plan on doing what I can to maintain gut health (lots of probiotics, eating right, watching candida, etc) and continuing on with my detoxing regimen. I also have to watch my gall bladder, which I will continue to do with intermittant liver flushing.

I think I remember that you're on a pretty low pulsed dose now? This is GREAT…this means you're on a much lower dose than your average teen is taking longterm for acne…some kids are on tetracyclines for years. Also, what are the alternatives to stopping? Possible relapse (if you haven't yet reached full, credible remission of both labs and symptoms) or switching to a DMARD or a biologic. In the latter case, the longterm risks associated with these drugs run much higher than low dose AP.

There are no guarantees you won't experience some side-effects of longterm use of minocycline, but you can do everything you can to support your body and immune function to prevent side-effects from occuring by eating right, exercising, maintaining gut health and to detoxing.  🙂 When you hit credible remission and have sustained it for a while, you could even try coming off your AP to see how you go, just as Kim has done. Wouldn't that be wonderful?

Sending lots of support your way!

Peace, Maz

 

 

[richie]

Hi–I have been taking 200 mg daily of minocin since 1999 —-no side effects at all except a nice southern Calif. tan !!!!!!!!—just take enough probiotic daily and drink at least 48 oz of fluid daily  and the risk of side issues is greatly reduced —I do have liver enzymes and kidney numbers checked yearly –absolutely normal —-
richie

[richie]

HI Patti —Taking diflucan to ward off yeast is a bit harsh on the system —take very large doses of probiotic daily to hopefully ward off yeast –when yeast appears -thats the time for diflucan –I am not a doctor but am relaying advice given to me by my internist —
richie

[lynnie_sydney]

Patti – I was on mino alone for 5 years (2003 – 2008 MWF) and dont know whether I even got any hyper-pigmention or whether they are simply age spots;);)! Other than that, absolutely no side effects. 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)

[JBJBJB]

Patti,

Unfortunately I developed some bad allergic reactions with minocyclin. I had rash, tons of rash, also diarrhea. In addition, the pain was pretty sharp, feeling like the shoulder joints were on fire with stabbing pain. My ESR went up to 40. I also developed very severe cough. Constant eye inflammation.

I did pulsing, it did not help at all.

[Kim]

Patti,

My longterm effects were I got better! 😀 😀 😀

Take care…..kim

[Patti D]

Maz,
Thanks for the reassurance. You know my family doctor is just the opposite as the OBGYN doctor, afraid to have me lower my minocycline dosage and the OBGYN was “concerned” I was still on it so go figure.

I am still on daily mino as I was too worried to try the pulsed dose. I am only on 100mg/day which has been great. I am about to go for bloodwork to check Rheumatoid factor & anti-CCP. Now if,(I really hope so) I have a normal RF I am going to try to skip at least Sunday with the mino which would put me at 600 mg for the full week which is the same quantity as the pulsed mon,wed, fri dosage.
Right now I don't give myself a chance to clear out the mino as I think the half life is 22 hours so going without, for a day probably will cause some herxing initially.

Going off mino completely like Kim scares the crap out of me. I never want to go back”there” again.I need to reread Dr. Browns book again, especially the information on remission and maintenance doses of abx.

I am feeling so much better on the thyroid compound so know that was really needed. Now I finally think I can get moving more so hopefully this extra poundage will start to go away. This weight can't be good for the joints.
Something new that is happening to me is that I sweat like crazy now, all of the time on & off. Not like a hot flash, real sweat with out the sauna?? Is this disease related or thyroid related. I am only cold now sometimes in the evening.

Lynnie – I had thought you were only on mino for quite a while.I hope I am as fortunate as you and need just this to stay healthy.

Richie- You too were lucky.I agree, no diflucan unless needed. less is More!
JB_ Sorry you had so many problems with mino.Are you on another antibiotic?

Thanks all!!
Sure appreciate you!

Patti

[Maz]

[user=287]Patti D[/user] wrote:

I am feeling so much better on the thyroid compound so know that was really needed. Now I finally think I can get moving more so hopefully this extra poundage will start to go away. This weight can't be good for the joints.
Something new that is happening to me is that I sweat like crazy now, all of the time on & off. Not like a hot flash, real sweat with out the sauna?? Is this disease related or thyroid related. I am only cold now sometimes in the evening.

Hi Patti,

Your mention of being on the thyroid compound in the same breath as having sweats made me wonder if your dose is a little too high for you? Is the doc regularly monitoring your thyroid labs?  Has your doc suggested splitting your thyroid dose during the day so you get more even serum levels throughout the day?

Any chance you're going through the change? I'm getting drenching sweats at the moment with my hot flashes. 

If not either of these, have you considered undiagnosed babesia? Sweats are pretty common with babs.

Hope you are able to figure this out, Patti, and so sorry you're getting such conflicting input from your docs. T'was ever thus…no matter what doc or specialist one goes to, there will be a different opinion. 😕

Peace, Maz

[susch]

Hi Maz,

I am a new member and I chose you because you seem to be very knowledgeable on the subject.  Here is a little background on me-one morning I awoke to find walking down my stairs seemed to be pretty painful-fingers were swollen, which sent me to my PCP for evaluation.  Initial lab results showed levels of 6.7 for sjougren's disease.  I was then referred to a RA specialist.  More tests and reports of the same – rheumatoid factor went from 8 to 10.  After much denial and much research while waiting for another RA's opinion, I came across the road back org.  And I thank God I did!  I waited in pain for 3 months for a doctor that practiced with AP therapy.  I was very well prepared for my visit, as I had ordered and read “The New Arthritis Breakthrough-The Only Medical Therapy Clinically Proven to Produce Long-term Improvement & Remission.”  I specifically asked to be tested for mycoplasma bacteria.  I left the Doctors office with a prescription for minocycline 50mg taken 2 in the morning and 1 in the evening everyday.  I returned 2 weeks later for my results.  My Doctor read me the results saying my level of m.pneumioniae was “off the charts!”  Levels should be less than 770, while mine were 1778.  My SED rate was at 51.  He told me that rate should be half my age-I am 52. He then switched me to 100mg doxycycline twice a day.  I was just starting to feel a bit better after being on the minocycline for 2 weeks.  One day after he increased my dose, I feel as I did before I started.  Very painfull and swollen hands and feet. I'm just curious about other members numbers.  Do mine seem really high-how much higher could they have gone? Does this course of treatment seem to be in line, and should I be glad that maybe I'm experiencing the herxheimer effect?
Thanks for your time-

[PhilC]

Hi Patti,

Since you've been on minocycline for 2.5 years, maybe it is time to consider a switch to a different antibiotic?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[richie]

Hi-why switch if things are going so well ????-
richie

[Patti D]

Maz,
You know I never thought about the thyroid compound being too much. I am only on 60 mg and Kim had mentioned cutting it in half and taking 1/2 at noon. The problem is I tried that for a week and was never in a spot where I could take it as I was usually at work training people and never could fit that other half in. It has always been trying fo me to take medications during the day. I take the thyroid first thing and now can't eat a breakfast as I am out the door training and take the thyroid on an empty stomach. Then comes the D3 & Vit C sometime during the day and mino at night with nyproxen.
I honestly don't know how people take all of these supplements besides if they are on the go all day.
I was thinking the sweating may be a good thing as I am getting the bugs out of my system. 2 months ago I was so cold all of the time and now that seems to be pretty much gone except sometimes at night. This is different that a hot flash. Sounds like you are getting your fill of those flashes too. Did you ever think you could be that “hot” and have it come on so quick. HA HA. You had mentioned the babesia before to me. That too can be treated with minocycline so maybe it is that. With all of this sweating I should drop a few pounds right???????

Phil,
You know I am not working with an AP experienced doctor. I am his first and since I have has success he is using antibiotics with other patients so for that i am really grateful. He is having success too with one patient with psa that he had tried to help for years and for the first time is feeling really good. He has told me anytime the mino quits doing its job he is willing to switch it up a bit. He has “The Arthritis Break through” and has been wonderful to work with so I may just agree with Richie. Stick with the mino until I need to explore other means.

Based on the information I have received here, the small side effects I have are really nothing to worry about. I feel so blessed to have not taken any mtx or other heavy hitters ever. Just mino so this little rash and mino tan & black & blue marks are nothing to worry about.

Thanks everyone. I will let you know how my bloodwork comes out. Could the RF be normal now. I hope so…..

Patti

[Maz]

[user=287]Patti D[/user] wrote:

You know I never thought about the thyroid compound being too much. I am only on 60 mg and Kim had mentioned cutting it in half and taking 1/2 at noon. The problem is I tried that for a week and was never in a spot where I could take it as I was usually at work training people and never could fit that other half in. It has always been trying fo me to take medications during the day.

I was thinking the sweating may be a good thing as I am getting the bugs out of my system. 2 months ago I was so cold all of the time and now that seems to be pretty much gone except sometimes at night. This is different that a hot flash. Sounds like you are getting your fill of those flashes too.

Did you ever think you could be that “hot” and have it come on so quick. HA HA. You had mentioned the babesia before to me. That too can be treated with minocycline so maybe it is that. With all of this sweating I should drop a few pounds right???????

Hi Patti,

Really hope your RF has come down, too! 😀

Kim's idea is a good one…maybe you could ask your doc if splitting your dose for more even serum levels throughout the day would be good….but would also ask to keep a close watch on those thyroid levels, as it can be difficult to find an optimal dose with thyroid for some folk and levels and need for thyroid meds can change over time, too. A friend of mine has been on thyroid meds for years…just recently, though, her endocrinologist lowered her meds, because she said her thyroid was working better. Weird, I know…but thyroid can be tricky like that and can swing back and forth.

Have you ever seen those little plastic pill containers you can buy from the pharmacy? They are small enough to fit in your pocket book or a pocket. If you have an alarm on your cellphone or watch, you can just set it every day to alert you to take your thyroid med. Carry a bottle of water with you and…voila! I had to get my hubby to do that when he was on antibiotics 3 times a day for an infection and, when traveling with his job, he's just hopeless remembering unless I'm there to nag. :roll-laugh:

Patti, really sorry to say, but babesia is a protozoan infection, not bacterial, so mino won't hack it. It needs specific meds, like anti-malarials (plaquenil), mepron, malarone, flagyl or tinidazole, unfortunately. Would be no need to change your mino, if you found you needed to add plaquenil or tinidazole, for instance. If you find adjusting your thyroid compound doesn't do the trick, maybe your “nice” doc would do a therapeutic probe with one of the anti-babesia meds for a few months to see if it helped your sweats?

Oh yes…I know exactly what you mean about the hot flash coming at you like a bolt of lightening!!! I was out with my hubby the other night for his birthday dinner and I was drenched through…my neck and hair soaking! What isn't fair is that I'm drenched through when I use my infrared sauna…like I've been thrown in a lake. I shower, get dressed….and then have hot flashes! :headbang: I'm definitely coming back as a man next time!!!

[Maz]

[user=2197]susch[/user] wrote:

My Doctor read me the results saying my level of m.pneumioniae was “off the charts!”  Levels should be less than 770, while mine were 1778.  My SED rate was at 51.  He told me that rate should be half my age-I am 52. He then switched me to 100mg doxycycline twice a day.  I was just starting to feel a bit better after being on the minocycline for 2 weeks.  One day after he increased my dose, I feel as I did before I started.  Very painfull and swollen hands and feet. I'm just curious about other members numbers.  Do mine seem really high-how much higher could they have gone? Does this course of treatment seem to be in line, and should I be glad that maybe I'm experiencing the herxheimer effect?

Hi Susch,

So very happy you found us, too, and a warm welcome! 🙂

Susan, please only take what I write as it resonates to you as I am just a fellow patient. 😉 

As your rheumatic symptoms seem to have been quite explosive (similar to me), it seems plausible, from what I have read and understood, that it would appear that what you describe, symptom-wise, is that you are suffering from something in the reactive arthritide catagory….i.e. that you've reacted to an infection of some kind….very possibly m. pneumoniae, as your titers are so high. This is just one possible infection and it's not uncommon for folk to be multiply coinfected.

Have you been given a definitive diagnosis by your treating physician? Primary Sjogren's? Seronegative RA with secondary Sjogren's? Reactive arthritis (ReA)? As you've read the book already, you'll know that Brown really didn't adhere to diagnostic labels much, as he was a “lumper” when it came to rheumatic arthritides and felt that they all responded to antibiotic therapy.

Do you have the reference ranges for your RF from the lab you used? Different labs used different parameters of measurement. I use Quest labs and and RF below 16 is normal.

Not sure which AP doc in NJ you are seeing…is it Dr W, the rheumy in Berkeley Heights?  Your SED rate is on the high side, but there are folk here who have reported much higher. My doc tends to use cardio CRP as he feels it gives a more accurate gauge of inflammation, but different docs use different tests. Also, in my case, my SED has been paradoxically normal all along, but my cardio CRP has been quite high in the past (0 to 3 being normal)….44 at my worst while herxing.

I'm just wondering why the high starting dose of 50 and 100mg mino a day and then the change to doxy at 100mg twice a day? Did your doc explain why he switched you to doxy and why the increase in dose? Usually, when patients have a lot of inflammation, then it's better to start with a low and slow approach. This is for a number of reasons…myco are slow growers/reproducers and so don't need high daily dosing…also, mino can cause some initial dizziness and nausea, which usually passes after a month or so, but can be an alarming early side-effect. You're on doxy now, so dizziness shouldn't be a problem, but nausea may occur. Also, the herxing with high daily dosing can be monstrous. Certainly sounds as if you may be herxing, as you've switched antibiotic and also increased your dose. Any changes in protocols can elicit herxing, which is an exacerbation of exisiting symptoms, as well as the experience of new symptoms in some cases. Here are a couple of links off the main site that explain this.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

Another problem that can occur with starting at a high daily dose is that hypersensitivity can build. This is when there is too much die-off all at once. When this happens, the dying pathogens release toxins (called antigens) into the surrounding tissues and the rheumatic's tissues respond to these toxins with increase inflammation (bacterial allergy). Too much inflammation from herxing can be counter-productive, as it prevents the antibiotics from reaching affected tissues. Here is an explanation of this:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210

If you find your herxing (early worsening) becomes intolerable, Susan, you may want to ask your doc if you can lower your doxy to an intermittant, pulsed dose. With AP, the rule of thumb is to go “low and slow.”

Have you had a chance to watch the Dr Brown video yet? If not, Brown explains his rationale for low, pulsed dosing further (see end of movie):

http://www.vimeo.com/3154687

If you find your player stuttering, just hit pause and wait for the gray buffer line to reach the end and then hit play again…should play smoothly then. 😉

Of course, if your doc suspects Lyme disease, then higher daily dosing may be necessary.

Does this help at all?

Peace, Maz

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