To Pulse or not to pulse meds

[York]

Happy New Year to All!

I have noticed that many people pulse their mino or doxy on here and I was wondering why that is.

If you pulse yours, would you please share the difference between taking it daily or 3x a week, etc.

Thanks so much.

[Maz]

@York wrote:

Happy New Year to All!

I have noticed that many people pulse their mino or doxy on here and I was wondering why that is.

If you pulse yours, would you please share the difference between taking it daily or 3x a week, etc.

Hi York,

Happy 2012 to you, too! Hope it is one that brings you renewed health. 🙂

If you don’t mind me asking, what have you been doing to treat your Lyme/Lupus till now?

There are many varying reasons for using pulsed, intermittent therapy as opposed to daily dosing. In large part, in the case of rheumatics (especially lupies and anyone with a lot of inflam), intermittent dosing tends to prevent hypersensitivity which can arise if there is too much die-off and circulating antigen (toxins released from bugs). Here is a link on the main site describing this:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/122.html

However, in the case of Lyme and coinfections, sometimes a “deal with the devils” needs to be struck and a balance found for rheumatic patients in that these infections often require high dose, daily dosings of multiple anti-microbials. If the patient can tolerate this, then this is what needs to be done. If it can’t be tolerated, then it’s better to use intermittent treatment than none. This is where “titrating the dose to patient tolerance” is needed and Brown discusses this at the end of the Henry Scammell book, “The New Arthritis Breakthrough,” if you have a copy to hand.If not, it’s worth reading the book to fully understand the rationale for using abx therapy for rheumatic disease as it should answer most burning questions.

Perhaps others can chime in with their experience of intermittent as opposed to daily dosing. In my case, I hit my Lyme and coinfections hard in my first year, which my LLMD felt was a necessary evil. While my highly elevated labs improved by 50% in that first year, I experienced a lot of creeping hypersensitivity, so didn’t feel as well as I might have. So, during my second year I switched to low dose minocycline and azithromycin and did very well, getting all my labs normalized by the 10 month mark. Unfortunately, I was one of the unlucky schmucks to develop drug-induced lupus from mino, so this set me back again and I had to switch out my protocol to a different tetra. When I started mino, I was a relative newbie and decided to go from 100mg daily to 100mg twice daily within 2 weeks to try to max out the immune-modulating benefits of mino. That was a big mistake, because I wound up having to stop and revert to 100mg twice daily MWF due to excessive herxing. It is far harder to dial the dose back and find an optimal dose when in the middle of herxing than it is to slowly build up the dose, as I found, much to my dismay. So, it was the low, intermittent dosing that eventually brought me success, but only after going after all the other tickborne infections my LLMD suspected.

Hope the above helps!

[York]

PM sent – thank you Maz!

[lynnie_sydney]

York – I have always pulsed per Dr Brown approach – for the first 5 years on mino alone and case managing myself with PCP rxing it. Since 2008 and on various combinations of abx to target additional pathogens, still pulse MWF. That’s the way my doc prefers to work (in combo with diet as part of treatment) and it works well for me.

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)

[DianaW13]

Hi Everyone,
On this subject, I would pose one more question re: pulsing.
I have been taking 100mg on MWF for 10 weeks now (I am currently on 5mg prednisone and weaning off), methotrexate and plaquenil. I hope to be off all of the other meds in the next few months too. How do you know if/when you should begin 200mg on MWF?
Also, thank you all for being here for all of us newbies! It means a lot!
Diana

[Maz]

@DianaW13 wrote:

On this subject, I would pose one more question re: pulsing.
I have been taking 100mg on MWF for 10 weeks now (I am currently on 5mg prednisone and weaning off), methotrexate and plaquenil. I hope to be off all of the other meds in the next few months too. How do you know if/when you should begin 200mg on MWF?

Hi Diana,

If it was me, I personally wouldn’t adjust my mino dose upwards until I was completely weaned from the other drugs, really because it can be so difficult to discern what is herxing and what is drug rebound in the early days. The mino dose can then be slowly dialed upwards to tolerance. Everyone is different, though, and others may be able to share their experience with you.

[BarbW]

Hi Diana,
For those who have scleroderma, like me, the minocycline rx is 100mg twice every day, which I worked my way up to over a few weeks and pretty much held for about 6 months. While the benefits for my disease have been clear, on this dose I really felt like crap most of the time. Extreme tiredness, intermittent dizziness, inability to focus (brainfog), occasional blue spots, etc. About every 4 or 5 days I would have to skip a dose just to get myself back to functioning for a day or two. It just felt like the dosage was too high for me.
So, I am trying a compromise. One day I take the mino first thing in the morning and last thing at night, then the next day I take it once in the middle of the afternoon. This basically puts my dose at 100 mg every 15-16 hours. I have been doing this for about 3 weeks now. It’s a little soon to tell if there is any difference in the effectiveness of the treatment, but, wow, do I feel much better. I hope this works because I’d like to be able to function while on this treatment.
I think dosages are not necessarily one-size-fits-all.
Barb

[vera]

Hi Diana,

I’ll mix it up even more. I did well on mino twice daily (100 mg each time) on MWF, but taking 2 days off was too long for me. As mino is a weak DMARD, it really does help me. So, after reading a few others on the board here had a similar experience, they decided to alternate every other day. Talked it over with my doc, and I’ve been doing that for about a year and am doing much better. Some say it’s hard to keep track. Well, I just write ‘mino’ on my calendar for the month and it keeps me straight.

Everyone is so different and you really have to do a bit of experimenting – though a person should go slowly.

Best!

Lori

[PhilC]

Hi Barb,
@BarbW wrote:

Hi Diana,
For those who have scleroderma, like me, the minocycline rx is 100mg twice every day, which I worked my way up to over a few weeks and pretty much held for about 6 months. While the benefits for my disease have been clear, on this dose I really felt like crap most of the time. Extreme tiredness, intermittent dizziness, inability to focus (brainfog), occasional blue spots, etc. About every 4 or 5 days I would have to skip a dose just to get myself back to functioning for a day or two. It just felt like the dosage was too high for me.
So, I am trying a compromise. One day I take the mino first thing in the morning and last thing at night, then the next day I take it once in the middle of the afternoon. This basically puts my dose at 100 mg every 15-16 hours. I have been doing this for about 3 weeks now. It’s a little soon to tell if there is any difference in the effectiveness of the treatment, but, wow, do I feel much better. I hope this works because I’d like to be able to function while on this treatment.
I think dosages are not necessarily one-size-fits-all.
Barb

You are doing what I call a “pulse overlay.” In other words, pulsed dosing overlaid on top of daily dosing. I think it’s a good approach. After doing this for several months you may find that you are able to tolerate the normal dose of 100 mg of minocycline BID (twice a day) every day.

Phil

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

[DianaW13]

Thank you everyone.

I’m sorry I forgot to mention that I have seroneg RA.

The 100mg MWF is helping immensely!!! (after only 10 weeks!!) However, does anyone find that by Sunday, after 2 days no Mino, they tend to feel somewhat stiffer? I do like the idea of going every 2 days! Also, I know it is recommended not to, but I have been decreasing the methotrexate 2 – 3 mg every 2 weeks or so, and 2.5 mg prednisone per month. I have not noticed any herxing (unless the odd day of somewhat more swelling/stiffness is it). My ESR and CRP have been rising (which I understand it will do as I lower the prednisone). Having said that, my overall visible inflammation is way down, and my range of motion is closer to normal. Where is all this inflammation suppose to be? It seems to me that my blood work is not reflecting how well I feel. Is this the norm?

Sorry this is so long and fragmented. I am on my own on AP. My GP and Rheumy have given me the Mino and let me run! Lol, I feel the burden for all the future runners in my home town. But this is another topic, which I am sure many of you are also experiencing.

Blessings to you all!
Diana

[vera]

Diana,

As I mentioned, I feel much better pulsing every other day and not skipping two days on the weekend – minocycline is classified a DMARD and definitely helps my pain. I just keep track by marking ‘mino’ on the calendar for the month every other day. I got my doc’s approval. It’s a very individual thing.

Lori

[DianaW13]

Hi Lori,
Yes, I read your post and liked the idea! I have been thinking about it. Only trouble is though that every other week my Mino dose would be on the same day as my methotrexate. I take it on the Tuesday each week. No one told me I can’t take them the same day, I just thought it may not be a good idea. Balancing meds can be complicated sometimes! I agree that I probably would feel better doing it your way though.
By the way, I live in Canada. For reasons I don’t understand minocycline is not recognized as a DMARD. Shame, as it is the only medication that has helped me.
Cheers,
Diana

[vera]

Diana,

That’s strange that it’s not a DMARD in Canada! My rheumatologist wants me to go on methotrexate, too, in addition to the Enbrel and mino. I’ve been on Enbrel since 2009 and have resisited the methotrexate so far.

But aside from that, she wasn’t on board with the minocycline until I started to show improvement in my symptoms. Then, she told me she would be happy to prescribe it for me (instead of my GP doctor who is treating me) – WOW! I guess the best thing is to ask your doctor if you can do both methotrexate and mino on the same days – I don’t know myself not being on the methotrexate. All I know is, I am much better not skipping two days on the weekend, but alternating the minocycline every other day. However, everyone is different. 🙄

Good luck, Diana!

Lori

[ouchy]

Just adding to Diana’s observation that Sundays can be significantly worse after two days off the mino – I don’t know whether this is the anti-inflammatory effect or part and parcel of the treatment (i.e. bug killin’!). My Sundays are the worst day by far, and the days after taking the mino the best. ouchy

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