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Posted 8/25/2016 5:20 PM (GMT 0)
Hello everyone! I recently got back a positive IGENEX test for lyme disease. I have been on 2000 mg per day of Amoxicillin for about 6 weeks (starting treating on symptoms before test came back). My doctor told me to start Dapsone this week (started a low dose on Monday). I know that it is a pretty new approach and can have some bad side effects, so I wanted to see if anyone else has been on Dapsone for lyme and get an idea of how it has worked for you. So far I seem to have increase numbness in my right arm and leg as well as increased headaches. I am not certain if it is a bit of a herx or a side effect of the medication. Any experiences or wisdom to share would be greatly appreciated!
Posted 8/25/2016 5:25 PM (GMT 0)
Hi Snarf, welcome to our community!

I can't comment on the Dapsone. Hopefully other members on it will see this thread and post about their experiences.

It does sound like a herx. Are your symptoms listed in the side effects of Dapsone?
It is difficult to know what's a herx sometimes..or what are side effects.

We direct all new members to take a look at the "New to Lyme?...Start here!" thread - at the top of the page.
It's packed full of useful information.

Are you detoxing to help clear out the toxins?
Posted 8/25/2016 5:41 PM (GMT 0)
Thank you! Yes the numbness is listed as a potential side effect, but I also notice that I tend to get that symptom about every four weeks (probably when the lyme cycles?). I also noticed that I had similar symptoms when I herxed from starting the Amoxicillin, so I"m hopeful that this is just a herx! I know that Dapsone is a fairly new approach for lyme and I haven't been able to find much on it other than Dr. H's findings from trials. My doctor provided me with a copy of that when she started me on it. I am also on a lot of supplements. If others also have some suggested herbs or supplements that they are using I would love to talk more to my doctor about that. I would like to move more that direction when I get to a place where I am comfortable coming off of antibiotics.
Posted 8/26/2016 12:00 PM (GMT 0)
Bump
Posted 8/26/2016 2:26 PM (GMT 0)
Please let us know what the dapsone does for you! I plan to treat mine with herbs and oral abx for about 9 months and then hit it with dapsone or rocephin if not in remission.
Posted 8/29/2016 1:33 PM (GMT 0)
I will keep you posted. I cannot get my MD to call me back regarding my symptoms, but I have an appointment scheduled for tomorrow. I have a lot more numbness in legs, hands, arms, and now face. Also have a migraine headache and ringing in the ears. I skipped the pill yesterday, but took it this morning. I'm either having a very major herx or a reaction to the med.
Posted 8/29/2016 4:17 PM (GMT 0)
Hoping it's a herx, but boy that seems like a scary one! I wonder if dapsone could be pulsed? Sounds like you could use a break.
Posted 8/29/2016 5:20 PM (GMT 0)
several of us are supposed to be starting dapsone soon. I will probably be starting in about a month. Please keep us posted how things go! It sounds like a herx to me, but these things can be really hard to figure out.

My doctor wants to start me at a very small dose then build up, they say the herxes can be intense from this drug.
Posted 8/29/2016 5:26 PM (GMT 0)
I have a question. Is Dapsone solely for lyme...or any of the co-infections?
Posted 8/29/2016 5:35 PM (GMT 0)
Horowitz is big on Dapsone but it's morbidity rate is 9.5% which scares the begeezus's out of me and my LLMD.

If you choose to use it be very very cautious.
Posted 8/29/2016 5:49 PM (GMT 0)
Girlie, I asked about this and they seemed to say that it also has activity against bart and I want to say protozoans as well.
Posted 8/29/2016 5:55 PM (GMT 0)
Jrpsf, from the readings I've done (and I need to do more) it seems that if you notice serious side effects once you stop the drug they will go away. It is used for leprosy and tuberculosis.

Quick question, does this 9.5% figure you are referring to come from this study? http://www.nejm.org/doi/full/10.1056/NEJMoa1213096

The dapsone hypersensitivity issue, which seems very serious, occurs in a small (but decently sized) portion of patients. I will see if I can find more information. Makes me a bit nervous to take dapsone the more I read about this potential serious side effect.

Post Edited (sebreg) : 8/29/2016 11:59:56 AM (GMT-6)

Posted 8/29/2016 6:11 PM (GMT 0)
I pulse it, only F/SAT/SUN

No symptoms so far
Posted 8/29/2016 6:14 PM (GMT 0)
I know one case study where a woman who was treated in the hospital, stayed there for a while and three weeks after she was released she passed.

I asked my LLMD about Dapsone and his response was he wasn't comfortable rx'ing it. He'd looked into it and the deeper he looked the worse he found. He pulled up the case I mentioned above while I was in his office. The 9.5% I found when I was looking. There are a lot of articles on it's morbidity rate.
Posted 8/29/2016 6:35 PM (GMT 0)
Yeah, I'm trying to read up, and from what I can tell about 1% of patients experience dapsone hypersensitivity syndrome, and about 10% of those cases it is fatal. So it ends up being .1% of a mortality risk as far as I can tell.
Posted 10/3/2016 3:38 PM (GMT 0)
just started dapsone treatment today at 25mg. Herx seems manageable. Going to keep an eye out for side effects.

Will update with news as I progress.

Anyone else have any news or reports on their experiences with dapsone?
Posted 10/3/2016 3:55 PM (GMT 0)
Please do update us periodically....
Posted 10/9/2016 4:14 PM (GMT 0)
Currently finishing up first week on dapsone. I've underestimated the herx a bit, it certainly seems quite strong and it seems like it will be an effective med for me. I tried bumping up to 50mg but the herxing got a bit too overwhelming, so I will currently see if I can manage an alternating schedule of 25mg one day 50mg the other.

Don't seem to be having any side effects so far. Will be getting a blood test this week to monitor blood chem and make sure everything is in range.

But overall I'm pleased that my body/pathogens seem to be responding to the medication. Time will tell. Cautiously optimistic.
Posted 10/9/2016 4:32 PM (GMT 0)
I have never taken it despite my llmd pushing me to try it. Are you scheduled to have blood work done every 2 weeks?

This is very important as Dapsone can cause a very serious form of anemia so blood counts must be monitored very closely.

Hope it helps you. Keep us posted.
Posted 10/9/2016 8:17 PM (GMT 0)
Hi sunny40! yup, blood work every 2-3 weeks. Completely understand nervousness in taking the medication in regards to side effects. The anemia is reversible though from what I understand upon stoppage of the drug so risk of permanent damage is negligible right? I was more worried about the hypersensitivity syndrome in regards to side effects.
Posted 10/9/2016 8:34 PM (GMT 0)
Its so close to sulfa ...i was scard too as bactim messed me
Posted 10/21/2016 10:52 PM (GMT 0)
Wondering how the Dapsone patients are coping?
Posted 10/21/2016 11:19 PM (GMT 0)
i'm wondering if it's used by itself - and does it not need another antibiotic with it?
Posted 4/17/2018 12:41 AM (GMT 0)
bump for sheeks ...dap is really close to a sulfa antibiotic in chemical structure and possible mechansism ...careful if one has a sensitivity .watch your folate ..keep us posted
Posted 4/17/2018 1:01 AM (GMT 0)
Thanks Blue. I'm aware. Doc prescribed deplin and leucovorin to keep folate levels high. I will really be on the lookout for rashes. I broke out in a fat rash on bactrim. White count plummeted. It was bad.
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