Thinking of Switching from Daily to Pulse

[Serenity]

Hi everyone,

I have been reading with interest the threads devoted to daily versus pulsed doses.  I have been taking 200mg generic mino (2x/day) for 2 years now, and am doing well.  All my blood work is still elevated but has never been extremely high.  Pain/inflammation is at a minimum and only seems elevated when I've indulged in too much gluten and dairy.

Pulsed dosing is sounding more appealing to me for a number of reasons.  It will be cheaper, plus I do believe in the infectious theory.  However, my Rheumy is strictly a MIRA guy, so if I do switch, the decision will be mine.  Here are some questions I have, if people can please advise:

1. I am a little scared at the thought of switching b/c I'm doing okay taking it everyday.  Will it jeapordize things to mess with something that's working?  Or will the fact that I caught my RA early on and have never taken any DMARDS mean that pulsing can potentially put me in remission?

2. I am concerned about overloading my liver/kidneys, and I assume that taking 6 pills / week versus 14 will be better for my system.  Is this true?

3. I am also concerned with eventually developing a resistance to mino, and hope that taking less mino will delay this from happening.  Is there validity to this?

4. My Rheumy said he wouldn't consider taking me off Mino for at least another year or two.  I don't know if that meant he would lower my dose, which in essence can mean pulsing.  Do you think I haven't been on it long enough to reduce my dosage?

If anyone has personal stories of switching from daily to pulsed, I would love to read them.

Thanks so much!

[Goodwife]

Serenity,

Hi, my hubby was dx with sclero. in Aug '06.  Began daily mino 200mg around end of Nov 06.  Was on it for about 6 months, and as do a lot of people, he felt worse.  At the 6 month mark of the daily dosing, he began IV clindy and after resuming mino, decided to try pulse dosing.  He decided this for a couple of reasons.  He wanted to give his body a break from too much abx.  He also felt better on the pulsed dosing – maybe this was just a coincidence following the IVs, but either way he felt better on a daily basis when he pulse dosed.   Also, he had his appendix removed years ago and within a month developed a serious infection that needed surgery to drain, and once we researched the infectious theory, we felt for sure that that infection was the cause of him developing SD all these years later.  So the pulse dosing made more sense all the way around.  He has been on it ever since, and does periodic IVs, too.  Hope this helps.  Good luck,

 

 

[JBJBJB]

Even though my illness is more severe, needs daily 200 mg minocycline, every other Sunday (two weeks), I do not take any medicine, just let my body “rest” for a day. During this Sunday, I pretty much use berry juice, veggie drink, probiotic yogurt, Ensure protein drink and Maz's wonderful olive lemon drink to get me through out the day. 

I did this on my own. I don't see it will hurt. Once I see improvement, I may take every Sunday off, and eventually I would like to pulse.

  

[Trudi]

Serenity–

I started on AP almost two months ago.  Had great improvement on it; however, reading in this bulletin board is very educational and I realized that if I wanted to kill the bacteria, the pulsing was the way to go; I started to pulse on my own about 3-4 weeks into treatment. 

JBJBJB–I've heard that it is a very good idea to stop supplements once a week.  I have often felt much better when I sometimes stop all of them for say a week–then wonder what might be in them that I feel better when I stop them??  A lot of my supplements are anti-inflammatory–so if the immune system works better while taking them, perhaps more bacteria are being killed off.  Just a conjecture 🙂

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Patti D]

Hi Trudi,

I am interested in pulse dosing also. I too live in Wisconsin and am looking for an AP doctor in the Milwaukee area. If you are close to Milwaukee could you PM me. Thanks. i have been on AP mino 2times daily since Dec 2007 and am progressing about the same as you. It sure helped. I am achy today, mostly stress. I have moved an entire area of furniture to higher ground as water is coming on three sides of our cottage. It's not in yet but has passed up the 100 year flood plain area and doesn't look too good.:(  Achy joints and all I've got to go help my neighbors. I am thrilled as 3 months ago I would not have been able to do any of this.:)

Happy & drier days;)

Patti

 

[Trudi]

Hi Patti–

I sent you two PM's and they both did not go through.  The error message reads:  Invalid username:  Patti D LD 5/07, RA 12/07.  Please check your spelling.  Since I clicked on your name, don't understand how that could happen.

Why don't you send me a message.  If I respond to yours, hopefully it will go through.  I'd love to compare notes–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=330]Serenity[/user] wrote:

1. I am a little scared at the thought of switching b/c I'm doing okay taking it everyday.  Will it jeapordize things to mess with something that's working?  Or will the fact that I caught my RA early on and have never taken any DMARDS mean that pulsing can potentially put me in remission?

2. I am concerned about overloading my liver/kidneys, and I assume that taking 6 pills / week versus 14 will be better for my system.  Is this true?

3. I am also concerned with eventually developing a resistance to mino, and hope that taking less mino will delay this from happening.  Is there validity to this?

4. My Rheumy said he wouldn't consider taking me off Mino for at least another year or two.  I don't know if that meant he would lower my dose, which in essence can mean pulsing.  Do you think I haven't been on it long enough to reduce my dosage?

Hi Serenity,

I switched from daily dosing to pulsed dosing very early on in my treatment with minocin, because I found the higher dose to be intolerable. Pulsed dosing has kept me comfortable while also providing periods of more controlled herxing.

Can't really offer “advice” 😉 only suggestions based on the limits of my experience and personal researches, but will try to answer your questions above:

1. Many people do well on daily dosing and, though it's considered to have higher immunosuppressive effect, there is probably an amount of die-off that still occurs. Really, there is no way to tell if changing to pulsed dosing will jeaopardize your progress to this point or not. Some people do find that when their disease has reached a period of drug-induced remission, they will wean the dose down very slowly to gauge how they do. Then, if they worsen, they can quickly up the dose again. It's really all trial and error. Some people have reported reaching remission on daily dosing, including Dr M's wife, whom he treated, himself, for a period of 16 months on daily dosing and she was able to come off minocycline altogether. However, in the radio show where he reported this, it did take several attempts to stop. Each time he withdrew the mino entirely, she relapsed.

If I were considering doing this for myself, rather than going directly to MWF pulses immediately, I think I'd try alternate days of 100mg one day and then 100mg twice a day the next in a repeat patten. Then, if that went well, I'd reduce by removing the 100mg day. Again, though, would not want to dispense medical advice…it's just what I'd personally attempt if I was dialing my own dose. 😉

Certainly, the fact that you caught your disease early and didn't suffer any consequences from other DMARDs probably means your toxic load is less than it otherwise might be, but many do begin AP on pulsed dosing and wean off the other DMARDs and do quite well, also. It's a very individual thing.

2. A lower dose of any medication is going to be less burden on the body. However, that said, when dealing with a chronic disease where you're feeling relatively well and relapse is possible, sticking with what currently works is always the 'safest' option. If you're having your bloodwork tested regularly and monitoring organ function, you should know well in advance of any serious problem. That said, teens typically are prescribed mino daily for acne, so it is considered to be a very safe drug for longterm use and the more common problems that one might experience would be hyperpigmentation that one can help to avert with the use of daily Vit C supplementation, as well as probiotics and a healthy diet for gut health.

3. As I understand it, resistance to the tetracyclines is considered to be rare, because they are bacteriostatic. That is, it doesn't work bacteriocidally (killing pathogens outright), but intracellularly in ways to block pathogen growth and reproduction. This means that the pathogens aren't able to produce a normal defense mechanism to resist this class of antibiotics. That said, some people do find that taking breaks from mino after a few years, rotating off the mino for a period of time with another class of antibiotic for some months, before returning to it is a good idea and particularly if they are experiencing a return of symptoms. You can check this further in “The New Arthritis Breakthrough” and I believe it's covered in the section, “How Tetracycline Works.”

4. You descibed your doc as “strictly a MIRA guy,” which sounds as if he's a pretty experienced Harvard Protocol AP doctor (?) and probably just wishes to ensure you don't relapse by coming off of AP too prematurely. You mentioned still having periods of elevated pain/inflammation, so this is a good indicator that something is still going on.

Winging “dialing your dose” alone (without doctor advice), by switching to pulsed dosing, it would really be a matter of trial and error to find a dose with which you're comfortable to tolerate possible herxing.

Peace, Maz

[Trudi]

Hi Patti–

Got your message, but it won't open.  Sent you back a message clicking on the “from” address, but it still says there is an error, etc. etc. :headbang:.  Frustrating!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Trudi]

Hi Patti–

The second one came through but I still cannot open it.  How about putting your email address in the subject line.  Third one's the charm–is that how it goes :)!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Patti D]

Trudi,

It's a no go:X I have tried now three times so I guess we are going to have to wait until someone from the board helps me;) figure out my person messaging.

AHH! Technology is such a blessing;)

We will get this squared away yet. Neither one of us need any stress so talk with you soon:blush:

Patti D

[Trudi]

Patti–

Your's came through; I replied to it but when I hit the send button it gave me the error message.

What I meant by your email address in the subject line, is your real one, so I can email you directly. 

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[richie]

Hi

You are feeling well on daily dosing and for some reason want to change to pulse –the name ,of the game is how are you doing on the dose you are taking –strongly suggest you ask folks around here how many are on daily dosing and doing well –it aint broke and you are looking to fix it ???????????

richie

[Serenity]

Thanks everyone for your thoughts.  I have a lot to think about, esp. how this will affect my long-term health (positively, hopefully!).  I don't want to play Russian Roulette with my protocol, esp. since it IS working for me, but I am trying to minimize the amount of Meds I take, and thought this may be a good start.  Will keep you posted.

I will post in the personal stories section if I decide to make the switch. 🙂

[lynnie_sydney]

One last thought. If you change your dose (to whatever) you are likely to experience a herx, alot of people do when they change their dosing schedule in any way. If a herx occurs, this is a good thing (if it is manageable). 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)

[Author]

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