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DAPSONE dosing question - anyone knowledgeable? (splitting tabs) and update

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Posted 8/22/2018 3:27 PM (GMT 0)
So, I'm taking 50 mg once daily ( thought it was 25 twice - but read instructions wrong)


I have 100 mg pills - that are scored .

I just read this online:

"Tablets should be taken whole and small doses should be made up from 25 mg tablets. Do not split the tablet."

Why not? What's gonna happen - I am splitting it.

Also found this:


Carcinogenicity
Dapsone in high doses has been reported to be carcinogenic in rats and mice, but negative in Salmonella mutagenicity assays. The relevance of this finding to human exposure is unclear.

www.medsafe.govt.nz/profs/Datasheet/d/DapsoneLinktab.pdf
Posted 8/22/2018 4:06 PM (GMT 0)
Doc had me splitting the pills, no problems, at least that I could tell.

How long are you supposed to be on the dapsone for? Do they mention what the rat dosage would correspond to for humans? Personally I wouldn't worry too much as 50mg doesn't seem like a large dose. Of course it's always good to research and make sure you feel ok with the potential risks though.

Do you feel any effects from the current protocol? making you herx at all?

Btw, another new member just posted this, I found it encouraging, in case you haven't seen it:

"Started treatment a few months ago with dapsone, doxy, and rifampin. Good things are happening... but, I am really starting to feel good for the first time, and I belueve it is because I am pulsing 5 on 5 off. My thoughts are I don't need a biofilm buster. I read that persistors are persistors because they fold and go dormant. They revert to non-persistors within 5 days off abx. Then hit them again. All my symptoms are fading, finally, after 16 years of treatment on every antibiotic, Chinese and Amazon Jungle herb, concoction I could muster.

Treated since 2002 for mycoplasma. Treated many times for bart and babs. First WB BB band appeared in 2014. Finally cdc positive western blot/WB for bb/lyme in 2017. It just took my immune system that long to build enough for antibody activity to show cdc positive."
Posted 8/22/2018 4:14 PM (GMT 0)

sebreg said...
Doc had me splitting the pills, no problems, at least that I could tell.

How long are you supposed to be on the dapsone for? Do they mention what the rat dosage would correspond to for humans? Personally I wouldn't worry too much as 50mg doesn't seem like a large dose. Of course it's always good to research and make sure you feel ok with the potential risks though.

Do you feel any effects from the current protocol? making you herx at all?

Btw, another new member just posted this, I found it encouraging, in case you haven't seen it:

"Started treatment a few months ago with dapsone, doxy, and rifampin. Good things are happening... but, I am really starting to feel good for the first time, and I belueve it is because I am pulsing 5 on 5 off. My thoughts are I don't need a biofilm buster. I read that persistors are persistors because they fold and go dormant. They revert to non-persistors within 5 days off abx. Then hit them again. All my symptoms are fading, finally, after 16 years of treatment on every antibiotic, Chinese and Amazon Jungle herb, concoction I could muster.

Treated since 2002 for mycoplasma. Treated many times for bart and babs. First WB BB band appeared in 2014. Finally cdc positive western blot/WB for bb/lyme in 2017. It just took my immune system that long to build enough for antibody activity to show cdc positive."

thanks, Sebreg - good to know I'm not the only one splitting the pills.

I did see that post - earlier...am going to go to that thread now and re-read it.
Looks promising.
Posted 8/22/2018 5:03 PM (GMT 0)
Awesome smile I know it's not easy doing these various meds, but just wanted to share something that looked promising. Mileage varies with this stuff as you obviously know, but always encouraging to hear someone doing well on a therapy we are trying, especially when they've also struggled for a long time to get better.

I don't think it's a bad idea to keep researching the dapsone especially if you are still worried about the risks. Please let us know what you keep finding out.
Posted 8/22/2018 6:04 PM (GMT 0)

sebreg said...
Awesome smile I know it's not easy doing these various meds, but just wanted to share something that looked promising. Mileage varies with this stuff as you obviously know, but always encouraging to hear someone doing well on a therapy we are trying, especially when they've also struggled for a long time to get better.

I don't think it's a bad idea to keep researching the dapsone especially if you are still worried about the risks. Please let us know what you keep finding out.

I'm not going to research anymore....putting on the blinders now. Ignorance is bliss???


Seriously though - I've decided to do the Dapsone.....we know that with these studies they give the rats and mice the drugs X times their body weight....so...
Posted 8/22/2018 6:20 PM (GMT 0)
Sounds good. Sometimes I had to do that, stop researching the side effects... and you know for me I often get terrible anxiety while I'm herxing. So reading that stuff can drive me mad in those situations!
Posted 8/22/2018 6:56 PM (GMT 0)

sebreg said...
Sounds good. Sometimes I had to do that, stop researching the side effects... and you know for me I often get terrible anxiety while I'm herxing. So reading that stuff can drive me mad in those situations!

I don't get the usual anxiety...but my nerves go berserk.....and I get all shivery when I'm reading this stuff...lol.

my husband is perplexed...because I've always been quite cool and calm...and now my nerves feel like they're frayed.
Posted 8/22/2018 9:20 PM (GMT 0)
I'd call the pharmacist about splitting the pills. I just read Dapsone's info sheet and it states not to split the pill. I've taken a med that splitting the pill completely changes the way the medicine delivers to your system making it semi dangerous. Err on the side of caution and call.
Posted 8/22/2018 9:26 PM (GMT 0)
Good advice. It's been a while since I was on the med. As I thought about it more I think my smaller doses were 25mg pills. When I built up to 100mg they switched me to pills of that caliber. I'm sorry for my lack of recall and for misremembering on the subject.
Posted 8/22/2018 9:36 PM (GMT 0)

Girlie said...

sebreg said...
Sounds good. Sometimes I had to do that, stop researching the side effects... and you know for me I often get terrible anxiety while I'm herxing. So reading that stuff can drive me mad in those situations!

I don't get the usual anxiety...but my nerves go berserk.....and I get all shivery when I'm reading this stuff...lol.

my husband is perplexed...because I've always been quite cool and calm...and now my nerves feel like they're frayed.

I think we are forever changed and that's ok. I could never in a million years have imagined this happening to me.
Posted 8/23/2018 12:49 AM (GMT 0)

jrpsf said...
I'd call the pharmacist about splitting the pills. I just read Dapsone's info sheet and it states not to split the pill. I've taken a med that splitting the pill completely changes the way the medicine delivers to your system making it semi dangerous. Err on the side of caution and call.

The pharmacist filled it with the instructions to split....and I've talked to him a few times about my new meds...and he never mentioned that it wasn't a good idea.

The med is scored to split. I'm thinking the info sheet saying not to split - means the ones that aren't scored as you can't split evenly...and without 'crumbs' maybe?
Posted 8/23/2018 3:31 AM (GMT 0)
Girlie- There's a group on Facebook that's just for people treating Lyme with Dapsone. I just sent a request to join if you're interested and are on Fb.
Posted 8/23/2018 3:42 AM (GMT 0)

ToddPaul said...
Girlie- There's a group on Facebook that's just for people treating Lyme with Dapsone. I just sent a request to join if you're interested and are on Fb.

So I know you need to join to read the posts on the closed groups but you can sometimes see who are members. I’m not sure I want everyone I know to see that.

Prob a way to limit that...I guess?
Posted 8/23/2018 5:14 AM (GMT 0)

sebreg said...
Doc had me splitting the pills, no problems, at least that I could tell.

How long are you supposed to be on the dapsone for? Do they mention what the rat dosage would correspond to for humans? Personally I wouldn't worry too much as 50mg doesn't seem like a large dose. Of course it's always good to research and make sure you feel ok with the potential risks though.

Do you feel any effects from the current protocol? making you herx at all?

Btw, another new member just posted this, I found it encouraging, in case you haven't seen it:

"Started treatment a few months ago with dapsone, doxy, and rifampin. Good things are happening... but, I am really starting to feel good for the first time, and I belueve it is because I am pulsing 5 on 5 off. My thoughts are I don't need a biofilm buster. I read that persistors are persistors because they fold and go dormant. They revert to non-persistors within 5 days off abx. Then hit them again. All my symptoms are fading, finally, after 16 years of treatment on every antibiotic, Chinese and Amazon Jungle herb, concoction I could muster.

Treated since 2002 for mycoplasma. Treated many times for bart and babs. First WB BB band appeared in 2014. Finally cdc positive western blot/WB for bb/lyme in 2017. It just took my immune system that long to build enough for antibody activity to show cdc positive."

I don't think I answered your questions:

He prescribed it for three cycles...which would be November....but when I went to make my next appt, he was all booked up for November, so I booked for December. Not sure if they will extend this protocol another month....or?

No, the equivalent human dosage to the rat dosage wasn't mentioned...not that I saw.

Yes, I'm 'feeling' this protocol. I was feeling somewhat better the past week/ week and a half....until I took the Dapsone and Rifabutin. I have the 'head' stuff again...not as bad as when I was on the Mepron though.

Also, today two hours after taking the meds...my back started burning (nerve pain) and that was something that had improved this past week and a half.


I received my Daraprim today...(had to be compounded at the pharmacy) and I'm not looking forward to taking it tomorrow with the Dapsone....ugh..

I have a little blister on my bottom lip...that is concerning me...I didn't bite my lip.
I had some blisters/lesions from Bactrim and ended up stopping that med. Was concerned about SJS. When I discussed this with Dr. J a few weeks ago, he asked me if I had any in my mouth...and I said 'no'.

So now I do....and I'm concerned....(as usual)

It's never ending - my fretting....lol.
Posted 8/23/2018 2:53 PM (GMT 0)
I'd take pictures just in case. I remember back in the day when I first started malarone I got tons of cankersores in my mouth (not blisters though). I think it was an immune response due to treating the infections and my body was dealing with a lot of toxins... not 100% though.

It def sounds like dapsone is effective for you which is a good sign. I'm not familiar with the blisters issue, but if it gets worse you might want to stop the medication, inform doc (including pics if possible), and wait to hear back. SJS is a scary one, so always best to play it safe if something seems to indicate that problem is cropping up. One little blister, wouldn't be too worried, if more appear and that is a sign of potential impending SJS then yeah, def would stop.

Worst case scenario is that you can't do the dapsone. That'd be disappointing, yes, but there are other ways to keep treating I'm sure! Fortunately there are many ways to get better, unfortunately finding the right pathways can be difficult.

Don't worry about fretting. I think your worries are completely fair, these journeys and treatments can be scary! I think it's good (and healthy) to have a place to share, and bounce one's concerns off of others.
Posted 8/24/2018 9:41 PM (GMT 0)
Thanks, Sebreg.

I do have the Rifabutin to fall back on...since I only did Rifampin for bart before.
PLUS, I now have Babesia treated...so maybe the bart won't have a chance now.

Blister cleared up...


Day 5 on the killer week....and not so bad today so far....


Did get a flare of my upper back - left side (my problem area) yesterday...and is somewhat better today.
Posted 8/25/2018 3:08 PM (GMT 0)
That's great that the blisters cleared up. Maybe it was like my case with the immune response to infections and toxin clearing...

Hope you see lots of progress!
Posted 8/26/2018 2:55 AM (GMT 0)

Girlie said...

sebreg said...
Sounds good. Sometimes I had to do that, stop researching the side effects... and you know for me I often get terrible anxiety while I'm herxing. So reading that stuff can drive me mad in those situations!

I don't get the usual anxiety...but my nerves go berserk.....and I get all shivery when I'm reading this stuff...lol.

my husband is perplexed...because I've always been quite cool and calm...and now my nerves feel like they're frayed.


I started getting that when i first took Buhner bart herbs. It was a different kind of anxiety. Do you find this relative to one particular infection?
Posted 8/26/2018 3:20 AM (GMT 0)

Aerose91 said...

Girlie said...

sebreg said...
Sounds good. Sometimes I had to do that, stop researching the side effects... and you know for me I often get terrible anxiety while I'm herxing. So reading that stuff can drive me mad in those situations!

I don't get the usual anxiety...but my nerves go berserk.....and I get all shivery when I'm reading this stuff...lol.

my husband is perplexed...because I've always been quite cool and calm...and now my nerves feel like they're frayed.


I started getting that when i first took Buhner bart herbs. It was a different kind of anxiety. Do you find this relative to one particular infection?

I’ve narrowed it down to Bart.. or Babesia... or Lyme. tongue

I don’t know - I’ve been a bit better the past couple weeks so is it because:

A) I’ve recently completed many months hitting Babesia?

B) In the last two months before my Aug 7 appointment - I added Rifampin for Bart into my protocol?

C) Neither - it’s just random sh-t happening. tongue



The shivers have been better along with the nerve pain I have - left side thoracic area/arm/hand.
Posted 8/26/2018 3:25 AM (GMT 0)
Oh - another thing that has been slowly improving - when I wake in the morning the low level anxiety and light sweating - it’s almost gone .
I’d say it’s 90% better now.
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