Home Forums General Discussion Minocycline Side Effects

This topic contains 31 replies, has 6 voices, and was last updated by  enzed 4 years, 11 months ago.

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  • #366161
    Patricia.Ann
    Participant

    What a BRILLIANT explanation of our toxins Laura 😀 Thank you for that. I wholeheartedly agree that we sometimes ‘forget’ how poorly we have been and the progress we have made – because we are still so poorly – if that makes sense!!! Your post really hit a chord with me and it is posts like yours that keeps me motivated to continue on with the treatment 😉

    Enzed – I started out just over a year ago taking Aknemin (which I think must be the same as your Akamin). I started at 50mg twice weekly and worked up to 100mg three times a week. I had no side effects but neither did it help my symptoms. I asked to be changed to a modified released capsule minocycline and was given Acnamino. I did experience some ringing in the ears with this one but no other effect. I took 100mg daily and have just had blood tests to show some improvement 🙂 However I still have very much swelling and pain which I take celebrex, prednisolone and morphine for. My latest script from my GP I was given, for some strange reason, Aknemin again. I have just started taking it this week 100mg every day and am having some problems. Not skin rashes as you are but upset tummy, headache and initially an increase in pain/swelling. I am thinking this must be herxing. Since starting treatment I have NEVER herxed!!! I am going to keep trying for a week or two see how I get along with the Aknemin again but if it doesn’t work out I will ask for my modified release back. I hope the GP will write the script for it but I have a feeling the change may be down to financial pressure from our surgery – oh dear! It would appear that Aknemin/Akamin affects quite a few of us. I hope you are successful in getting Minomycin and your Roadback becomes a little less troubled.

    Warmest wishes to you both.

    Patricia x

    #366163
    enzed
    Participant

    Thanks Laura and Patricia for the last 2 posts. Very informative.

    I think I should stay with the ‘washout’ method. When I restart mino (whichever brand) I will do as I have done before, take 50mg once a day for a week then increase to 100 mg daily until my skin and gut react, then stop the mino and detox. After a break to get rid of the toxins, I will restart using the same doses. I will also start showering using ‘phisohex’, a very smelly product people use to kill bacteria on the skin before going into hospital so they don’t take bacteria into the hospital. That might help by killing the bacteria on my skin, assuming bacteria is there.

    After a few days without mino, the left side of my body remains pain free, but my right side is aching with twitches of pain and my right knee is swelling up and tender. It tells me that the mino worked on the left side, but has not yet finished its work on the right side. Why the treatment has not worked evenly throughout my body is unknown at this point.

    #366164
    laurawm
    Participant

    Hi again Enzed,

    My pain and swelling and healing is never even on each side of my body. Ever. Best I understand this is there are certain joints/areas that are more infected than others and those are the ones that take longer to clear. Also, when you add higher doses of ABX you hit areas that were not previously touched so it can seem like there are new symptoms, when really it is either higher meds or cyclical die off of bugs that were already there but not dying and releasing any toxins previously.

    If your rashes are actually herx/detoxing, then they are likely a detoxing of what mino is clearing out of your body and a sort of after effect of die-off. A topical antibiotic couldn’t hurt, but it may be that you never see the rashes again if your body has cleared these areas through your skin. Just a thought. I hope I’m not tiring you. I’m only a year into this, but this is not the easiest treatment and I guess it makes me feel a bit better about it all if my experiences are able to help anyone at all. Best wishes.

    Laura

    #366165
    enzed
    Participant

    @laurawm wrote:

    Hi again Enzed,

    My pain and swelling and healing is never even on each side of my body. Ever. Best I understand this is there are certain joints/areas that are more infected than others and those are the ones that take longer to clear. Also, when you add higher doses of ABX you hit areas that were not previously touched so it can seem like there are new symptoms, when really it is either higher meds or cyclical die off of bugs that were already there but not dying and releasing any toxins previously.

    If your rashes are actually herx/detoxing, then they are likely a detoxing of what mino is clearing out of your body and a sort of after effect of die-off. A topical antibiotic couldn’t hurt, but it may be that you never see the rashes again if your body has cleared these areas through your skin. Just a thought. I hope I’m not tiring you. I’m only a year into this, but this is not the easiest treatment and I guess it makes me feel a bit better about it all if my experiences are able to help anyone at all. Best wishes.

    Laura

    Thank you Laura. No, you’re not tiring me! It’s good to know your healing is uneven on each side of your body and that my progress is no different. I only started AP in October 2012 so it’s early days for me. My first herx was huge sweating – so dramatic, I couldn’t even leave the house for a week. I had to shower every 2 hours and the sweat smelled bad.
    When I restarted mino after a washout, that didn’t happen again. It does make sense that the die off is occurring through my skin (and gut) so it also makes sense that I should wait until this lot has cleared, ie, detox completed, before I start mino again and kill off yet more bacteria. Like your road block theory. At first I thought it was an allergic reaction to minocycline but now I’m doubting that. The die off / need to detox theory makes more sense. If you guys didn’t help me out here, I wouldn’t be able to clarify how I need to proceed. It’s all great information and very, very helpful.

    #366160
    PhilC
    Participant

    @enzed wrote:

    I think I should stay with the ‘washout’ method. When I restart mino (whichever brand) I will do as I have done before, take 50mg once a day for a week then increase to 100 mg daily until my skin and gut react, then stop the mino and detox. After a break to get rid of the toxins, I will restart using the same doses.

    It’s really not such a good idea to repeatedly start and stop your antibiotic therapy like that. A better approach is to move forward at a much slower pace, one that your body is able to handle without too much difficulty. Consider trying what I call a “pulse overlay,” which is pulsed dosing overlaid on top of daily dosing.

    If I were in your situation, what I would do is start back on 50 mg daily just like you have planned, and try to stay on that dose for one month. During month two I would continue taking 50 mg of minocycline every day except on Mondays, when I’d take a single dose of 100 mg (i.e., two 50 mg tablets) instead. During month three I would continue taking 50 mg of minocycline every day except on Mondays and Fridays, when I’d take a single dose of 100 mg instead. During month four I would continue taking 50 mg of minocycline every day except on Mondays, Wednesdays, and Fridays, when I’d take a single dose of 100 mg instead. After month four is over I’d probably stay on the same dosing schedule for another month or two, depending on how I feel, before increasing the dose to 100 mg of minocycline daily. Once I am taking 100 mg of minocycline every day I would stay on that dose for at least a month before trying to increase the dose any further. Does that make sense?

    By the way, if the above regimen turned out to be too intense I would cut some of the tablets in half and put the tablet halves in empty 00 gelatin capsules. I’d then start taking a tablet and a half (75 mg) on the pulse days instead of 100 mg.

    @enzed wrote:

    I will also start showering using ‘phisohex’, a very smelly product people use to kill bacteria on the skin before going into hospital so they don’t take bacteria into the hospital. That might help by killing the bacteria on my skin, assuming bacteria is there.

    I wouldn’t do that if I were you. Everyone has bacteria on their skin. It’s perfectly normal. If you kill enough of the bacteria on your skin you may increase your chances of getting a fungal infection. Just use regular soap and water.

    Phil

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

    #366146
    enzed
    Participant

    @philc wrote:

    @enzed wrote:

    I think I should stay with the ‘washout’ method. When I restart mino (whichever brand) I will do as I have done before, take 50mg once a day for a week then increase to 100 mg daily until my skin and gut react, then stop the mino and detox. After a break to get rid of the toxins, I will restart using the same doses.

    It’s really not such a good idea to repeatedly start and stop your antibiotic therapy like that. A better approach is to move forward at a much slower pace, one that your body is able to handle without too much difficulty. Consider trying what I call a “pulse overlay,” which is pulsed dosing overlaid on top of daily dosing.

    If I were in your situation, what I would do is start back on 50 mg daily just like you have planned, and try to stay on that dose for one month. During month two I would continue taking 50 mg of minocycline every day except on Mondays, when I’d take a single dose of 100 mg (i.e., two 50 mg tablets) instead. During month three I would continue taking 50 mg of minocycline every day except on Mondays and Fridays, when I’d take a single dose of 100 mg instead. During month four I would continue taking 50 mg of minocycline every day except on Mondays, Wednesdays, and Fridays, when I’d take a single dose of 100 mg instead. After month four is over I’d probably stay on the same dosing schedule for another month or two, depending on how I feel, before increasing the dose to 100 mg of minocycline daily. Once I am taking 100 mg of minocycline every day I would stay on that dose for at least a month before trying to increase the dose any further. Does that make sense?

    By the way, if the above regimen turned out to be too intense I would cut some of the tablets in half and put the tablet halves in empty 00 gelatin capsules. I’d then start taking a tablet and a half (75 mg) on the pulse days instead of 100 mg.

    @enzed wrote:

    I will also start showering using ‘phisohex’, a very smelly product people use to kill bacteria on the skin before going into hospital so they don’t take bacteria into the hospital. That might help by killing the bacteria on my skin, assuming bacteria is there.

    I wouldn’t do that if I were you. Everyone has bacteria on their skin. It’s perfectly normal. If you kill enough of the bacteria on your skin you may increase your chances of getting a fungal infection. Just use regular soap and water.

    Phil

    Thanks Phil, I will print this out and study it closely.

    #366168
    PhilC
    Participant

    Hi Patricia,
    @Patricia.Ann wrote:

    Enzed – I started out just over a year ago taking Aknemin (which I think must be the same as your Akamin).

    Despite the similar-sounding names, those two brands of minocycline are not the same thing.

    @Patricia.Ann wrote:

    My latest script from my GP I was given, for some strange reason, Aknemin again. I have just started taking it this week 100mg every day and am having some problems. Not skin rashes as you are but upset tummy, headache and initially an increase in pain/swelling. I am thinking this must be herxing. Since starting treatment I have NEVER herxed!!! I am going to keep trying for a week or two see how I get along with the Aknemin again but if it doesn’t work out I will ask for my modified release back.

    That’s good! It means the Aknemin is doing its job. The best way I’ve found to deal with unpleasant “die-off” reactions is to reduce the dose until they disappear or become tolerable, with 25 mg being the lowest dose allowed. In my case that meant 25 mg, which I obtained by splitting 50 mg tablets in half. I stayed on that dose for one month and then started slowly increasing my dose using a regimen that is similar to what I described in this message:

    http://www.roadback.org/forum/viewtopic.php?p=65716#p65716

    Are you able to get minocycline tablets in the UK? The 50 mg tablets are really handy for fine tuning one’s dose. By splitting them in half I am able to increase my dose like so:

    25 mg —> 50 mg —> 75 mg —> 100 mg —> 125 mg —> 150 mg —> 200 mg.

    Phil

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

    #366166
    enzed
    Participant

    Phil wrote:

    If I were in your situation, what I would do is start back on 50 mg daily just like you have planned, and try to stay on that dose for one month. During month two I would continue taking 50 mg of minocycline every day except on Mondays, when I’d take a single dose of 100 mg (i.e., two 50 mg tablets) instead. During month three I would continue taking 50 mg of minocycline every day except on Mondays and Fridays, when I’d take a single dose of 100 mg instead. During month four I would continue taking 50 mg of minocycline every day except on Mondays, Wednesdays, and Fridays, when I’d take a single dose of 100 mg instead. After month four is over I’d probably stay on the same dosing schedule for another month or two, depending on how I feel, before increasing the dose to 100 mg of minocycline daily. Once I am taking 100 mg of minocycline every day I would stay on that dose for at least a month before trying to increase the dose any further. Does that make sense?

    By the way, if the above regimen turned out to be too intense I would cut some of the tablets in half and put the tablet halves in empty 00 gelatin capsules. I’d then start taking a tablet and a half (75 mg) on the pulse days instead of 100 mg.

    OK Phil, Today I started back on 50mg using the same prescription of minocycline. I will stay on that for a month and see what happens. I did wash with Phisohex but just on the skin eruptions for 3 days and they stopped itching fast and healed up quickly although there are lots of red marks / scarring left behind. I am already feeling my joints stiffen again so am attributing that to having stopped the minocycline. I haven’t asked the pharmacist for mino ingredients in Australian products – every time I go to see him there are too many people, he’s too busy. Thanks for the help.

    #366167
    PhilC
    Participant

    @enzed wrote:

    I haven’t asked the pharmacist for mino ingredients in Australian products – every time I go to see him there are too many people, he’s too busy.

    That seems like too much to ask. Just get the brand names (if applicable) and the names of the manufacturers. The ingredients can be looked up online. Be sure to get correct spellings.

    Phil

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

    #366169
    Patricia.Ann
    Participant

    Hi Phil,

    Thank you so much for taking the time to reply and helping me with a ‘plan’. I really appreciate that you have done that. You are such a help to me and to so many on here : That’s why I love this forum so much – people like you so willing to help in any way possible when people like me get in trouble 😉 I am hopeful that I may be able to do the same one day and give back the help and support I have been given so willingly….

    I did reduce my Aknemin but by missing out a two or three days a week – because all my capsules were 100mg – I have now got up to almost daily dosing again and things seem to be settling down – although I have had a bloodshot eye the past couple of days which sometimes comes when I have a higher level of inflammation – oh dear!!

    Sending a great big hug across the pond for your kindness.

    Patricia x

    #366170
    enzed
    Participant

    @enzed wrote:

    Phil wrote:

    If I were in your situation, what I would do is start back on 50 mg daily just like you have planned, and try to stay on that dose for one month. During month two I would continue taking 50 mg of minocycline every day except on Mondays, when I’d take a single dose of 100 mg (i.e., two 50 mg tablets) instead. During month three I would continue taking 50 mg of minocycline every day except on Mondays and Fridays, when I’d take a single dose of 100 mg instead. During month four I would continue taking 50 mg of minocycline every day except on Mondays, Wednesdays, and Fridays, when I’d take a single dose of 100 mg instead. After month four is over I’d probably stay on the same dosing schedule for another month or two, depending on how I feel, before increasing the dose to 100 mg of minocycline daily. Once I am taking 100 mg of minocycline every day I would stay on that dose for at least a month before trying to increase the dose any further. Does that make sense?

    By the way, if the above regimen turned out to be too intense I would cut some of the tablets in half and put the tablet halves in empty 00 gelatin capsules. I’d then start taking a tablet and a half (75 mg) on the pulse days instead of 100 mg.

    OK Phil, Today I started back on 50mg using the same prescription of minocycline. I will stay on that for a month and see what happens. I did wash with Phisohex but just on the skin eruptions for 3 days and they stopped itching fast and healed up quickly although there are lots of red marks / scarring left behind. I am already feeling my joints stiffen again so am attributing that to having stopped the minocycline. I haven’t asked the pharmacist for mino ingredients in Australian products – every time I go to see him there are too many people, he’s too busy. Thanks for the help.

    9/1/13
    I actually reconsidered the dose and in case it was too high, on 21/12 I started back on minocycline at 50mg every second day instead of every day. So far I haven’t felt too bad, although if I miss a daily microbiotic dose my stomach does react and food tastes awful. So I will stay on the present regime, 50 mg every second day and see how it goes. So far no more skin eruptions and the raynauds finger ulcer finally healed up completely so the lowered dose certainly healed the last stubborn lesion on my finger. A lot of the stiffness is back on this lower dose though.

    Aspen Australia make ‘minomycin hydrochloride’ in 50mg and 100mg so I could ask for that instead of the Akamin brand, if that would help avoid the skin eruptions that I get on the higher dose of minocycline??? Is that worth trying????

    enzed

    #366171
    lynnie_sydney
    Keymaster

    enzed – Aspen appears to be the same company as Sigma.
    http://www.ipaustralia.com.au/applicant/aspen-pharma-pty-ltd/trademarks/402981/

    So it would appear that this is the brand in Australia (you could call Aspen to make sure. My AP doc will not use any Australian generic, (says the generics here do not work well) so I would absolutely be looking to buy this one.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #366172
    PhilC
    Participant

    @enzed wrote:

    Aspen Australia make ‘minomycin hydrochloride’ in 50mg and 100mg so I could ask for that instead of the Akamin brand, if that would help avoid the skin eruptions that I get on the higher dose of minocycline??? Is that worth trying????

    Yes, I think it would be worth trying the Minomycin at some point. However, since you seem to be doing OK with your current dosing schedule (50 mg every other day), it would probably be best to stick with that for at least a month before making any changes. Unless, of course, your doctor recommends otherwise.

    Phil

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

    #366173
    enzed
    Participant

    @philc wrote:

    @enzed wrote:

    Aspen Australia make ‘minomycin hydrochloride’ in 50mg and 100mg so I could ask for that instead of the Akamin brand, if that would help avoid the skin eruptions that I get on the higher dose of minocycline??? Is that worth trying????

    Yes, I think it would be worth trying the Minomycin at some point. However, since you seem to be doing OK with your current dosing schedule (50 mg every other day), it would probably be best to stick with that for at least a month before making any changes. Unless, of course, your doctor recommends otherwise.

    Phil

    Thanks Phil, I’ll follow your advice and keep up the minocycline 50mg every second day for another month, and see how that goes before considering a change.

    #366174
    enzed
    Participant

    @lynnie_sydney wrote:

    enzed – Aspen appears to be the same company as Sigma.
    http://www.ipaustralia.com.au/applicant/aspen-pharma-pty-ltd/trademarks/402981/

    So it would appear that this is the brand in Australia (you could call Aspen to make sure. My AP doc will not use any Australian generic, (says the generics here do not work well) so I would absolutely be looking to buy this one.

    Many thanks Lyn, I have now looked online and the Aspen minomycin costs $85 for 30 x 50 mg doses. I’ll check with my pharmacy in case they charge more than that. I’ll also check with Aspen to be sure they are the same company as Sigma and the minomycin is the same one. No point in paying all that money if its not.

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