t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Tincup:
Knowing how hard it is to see and communicate with LLMD's this becomes problematic.
4 out of 18, 22% chance of terminating if not managed is a pretty high.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, you are absolutely right. I know it scares me to see these results and I'm not even on that medication.
Just so you know... I've sent it to LLMD's- as many as I can-and have already heard back from some. Hoping they will write up something and share it with others instead of my... "The Sky Is Falling, The Sky is Falling" announcement.
I would also like to encourage all patients to be sure their own LLMD sees this study ASAP, even if they aren't on the med themselves.
I certainly can't reach all docs treating Lyme patients and the info needs to be seen and evaluated.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
As I am re-reading the study with more time and thought (and absorption) I want to clarify my comment where I said above- quote- "(18 patient study)".
I should have explained this better at the time, but was in a hurry to write it all up and get it out to various places.
The "18" patients reference- in brackets- was specifically noted by me to emphasis the fact that out of those 18 people with adverse reactions, four died.
For this study many hospital records (2,205 admissions to a leprosy treatment facility) were reviewed.
Then, 18 people who were on dapsone and other meds had the adverse reactions and were specifically described in detail for this study.
In other words, not everyone who ever took Dapsone had these reactions, but for the ones who did- it was severe and even deadly in some cases.
QUOTE- after authors reviewed another separate study-
"Lymphadenopathy due to dapsone was found to be 34.9% in leprosy patients. In the same study, seven patients died, with a death rate of 11.1% due to dapsone hypersensitivity.
In our study, out of 18 patients, four patients died due to dapsone ADRs, three patients were cured and some were still on treatment.
Out of four patients who died, two expired due to severe anemia and two others expired due to jaundice and severe dapsone syndrome."
``````````````````````````````````
Now I want to go back and re-read for a 3rd time- tomorrow when I am "fresh"- and do some more research to see if this could have possibly been part of an unrecognized herxheimer reaction?
Just a wild thought, but wanting to see if that is at all possible. Not even sure if herxheimers are described in the literature for leprosy patients, so it will take some time to put the pieces together.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Aside from the fact that this is a serious also, there are other considerations as well - whether this or other Rx.
This is why most good LLMDs insist on proper support for the liver, lymph, etc.
And most good LLMD will change treatment if a patient does not do well. They have many options.
Any study of a drug that ignores the overall comprehensive use - or, in this case, lack - of a support plan can be skewed.
Also to note: coinfections that can also interfere. Another reason why most good LLMDs also consider the full load.
for someone with babesia, it may well be that the anemia related to babesia is vital to consider.
patients without a doctor who knows all this would be at a disadvantage.
And acetaminophen use - at home it's often recommended
and even more so in hospital settings, most often acetaminophen is handed out like candy. That can cause a patient failure due to toxic overload.
Acetaminophen blocks not just the liver from making and using glutathione but each cell in the body, too. This - IMO - is why more patients die because of the lack of medical management for body support.
Also, sadly for those in hospital: there are so many issues that make even being in a hospital dangerous such as the intense noise, bad lights, physical handling and overall hostage like atmosphere.
Many patients in ICU report a rough kind of post traumatic stress reaction for months later. Really. It's a damaging environment that, not just in my opinion - can put any patient as severe risk even if not in the ICU.
Do you think that any of the patients with lymph issues got any kinds of proper lymph manual massage or lymph support? That just does not happen in hospitals. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I tried Dapsone with Rifampin for about 10 days in December 2016. I developed a burning peeling rash on my arm and stopped immediately. The pain was bad and lasted for over two weeks.
It wasn't the right drug for me. My doctor has said that several of her patients are doing really well on it and many others have to stop.
Posts: 68 | From Kentucky | Registered: Jul 2010
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posted
interestingg. :/ soooooo life or death with dapsone.... This is beginning to look like Russian Roulette!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, it is not Russian Roulette. That's jumping the gun to just think that about any option. Ever.
That several are doing very well with this is good news. That some don't, though, is cause to just become more educated and talk with one's LLMD as to the considerations.
I would never walk into any action without studying all aspects and being sure medical guidance had covered all the bases required before starting any thing. I hope others would do the same.
That puts the odds in my / your favor much higher even if it's still just wait and see time as to how one can handle something, you have things in place first and then know exactly what to do if there are signs something is not right for your body.
To start with, some patients would never be put on certain Rx if there are indications it would be too much for their body functions / organs.
Yes, there are risks but it's not a cause to think that it's just luck of the draw.
If one has a good doctor they think through all the variables.
Most LLMDs are very - very - aware and adept at knowing the individual patient as to how their body organs and functions might handle this -- and being careful about their overall Rx plan & support methods.
And, if one has trouble even after that, communication with one's doctor as to how to change course. Communication with a wise doctor who has thought it all out first is the best tool when it comes down to it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Did you actually read what you posted? The antics of this particular poster are starting to really trouble me. There is an agenda driven, melodramatic tinge to the posts, and in this case completely separated from reality. I am guessing a morning google search, a skimming of what is found, and then a quick posting, which in many cases, this in particular is just fake news and conflated.
Did you see that the during the entire period, incidence of ADR was 0.82%!!!! That is less than ONE PERCENT. In the final year, it had reached a whopping 1%. That means for every 100 people treated, ONE had a reaction. So apparently, this poster has taken the 8 people who did have reactions, out of a sample size of 800, and then bizarrely came to the conclusion that 30% of all people on dapsone died.
This is the worst form of internet misinformation. This type of half accurate analysis tinged with an agenda, and we have to get a grip with reality when posting.
The very fact that this poster went and sent on this info to a large number of LLMDs while misunderstanding the study is even scarier in my opinion. Speaks to what people can do to influence care based off of nothing but emotion and seeing what you want to see and working yourself up.
Posts: 173 | From USA | Registered: Aug 2015
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posted
BTW The instinctive first thought when I saw this post's topic and then read the actual post and study was Yellow Journalism. Now it was just what I had as an impression, but for my edification, I looked up the definition:
Yellow journalism, or the yellow press, is a type of journalism that presents little or no legitimate well-researched news and instead uses eye-catching headlines to sell more newspapers. Techniques may include exaggerations of news events, scandal-mongering or sensationalism.
And that is essentially exactly what this post is. A technically true statement, used to conflate the actual study.
Let me give you a modified example of what this poster does. Topic: WARNING! Plane Travel Kills People!! This is of course true because plane crashes have killed people. What you dont get from the sensationalized headline is that, by far air travel is the safest form of transportation available.
This study speaks to the tangible safety of dapsone treatment. By the last year of the study, 0.26% of people had ANY dapsone reaction. That is 1 out of 400 people. And of those very very few who had a reaction, most did not die. How you can turn those study results into some kind of antithetical hysteria is the very definition of yellow journalism. Its just modernized in forums in the internet age.
Posts: 173 | From USA | Registered: Aug 2015
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posted
If you looked up any antibiotic we have been taking, you will find a similar laundry list of adverse reactions in rare circumstances. Your underlying point is not suported by cutting and pasting cases of people who respond negatively. You will always have that. Infact, the very fact that you see RARE used in the titles of many of those studies is an indication of this. The OPs original post linked to a study. 99% of people who received Dapsone treatment over a 3 year period had NO reaction. So while cases like this do happen, it is not common. And to further my yellow journalism supposition, this type of response would be like posting 8 articles about major plane crashes without comment. United 232, TWA 800, Pan Am 103, etc. It says nothing about the overall safety and only speaks to the fact that in rare cases, people do die.
Posts: 173 | From USA | Registered: Aug 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Don't mind Christopher's bad behavior. He hates me, so he does everything he can to try to discredit whatever I say even though he has nothing to back up his "claims".
It's to, no, actually, it's past the pitiful point... blah blah blah....
At least t9im got the point I was making and has the same concerns.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good input Stumpy, but sorry you had that bad experience. Now if we see others have a reaction like that maybe we will have some suggestions to share.
posted
I think without a doubt you have to weigh the risk to reward ratio on some of these antibiotics, especially Dapsone. It's a strong drug, but I think you also should not blow things out of proportions and try to understand studies first before jumping to conclusions.
Hyepersensitivty leads to death, it happens, seems to happen lot more with the sulfa drugs, hence Bactrim. Lot of allergic reactions to these antibiotics than most.
I for one, would consider taking the drug at a low low dose, 25mg a day, to prevent Hyepersensitivty. Dr. H mixing drugs together which only increases the chance of hyepersensitivty. For me, Dapsone has given me incredible results at 25mg a day with Stevia. Dr. H is a brilliant man, but remember it's your life, taking risks combining antibiotics together may not be worth it. Especially when longterm treatment in low dose maybe just as effective with Dapsone.
This drug has a long long long half life for me, it builds up in the system even at 25mg, breaks are a must, be careful and take care, I think Tincup posting this is well deserved regardless of maybe reading the study wrong.
Posts: 108 | From Germany | Registered: Jul 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Mr. Fitzgerald said.. "I think Tincup posting this is well deserved regardless of maybe reading the study wrong."
HA! To clear that up.... I didn't read the study wrong.
posted
"3 year study, underwent multidrug therapy..."
Failed to mention those main elements, what other drugs they were on, how long the study was.
You have to consider these things before jumping the gun and just saying 4 people died in an 18 person study.
This is one of the more harshest studies done, probably not a good comparison to some of the other studies done on Dapsone. Dr. H only recommended being on the drug for up to a year.
Still interesting study nonetheless, I just hope you're not misinterpreting the numbers... I'm reading what you're reading...
Good luck and take care, appreciate the share...
Posts: 108 | From Germany | Registered: Jul 2017
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posted
Thanks Tincup! I think it is good for all of us to share our experiences because we are all different in our responses.
Posts: 68 | From Kentucky | Registered: Jul 2010
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posted
Leprosy is not spirochetal
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Mr. Fitzgerald said...
"3 year study, underwent multidrug therapy..." Failed to mention those main elements, what other drugs they were on, how long the study was."
You are right. I didn't quote at least 99% of that study.
But, I am not here to do a word by word breakdown of a complex 6 page scientific study for people who, if they are interested, can read the study for themselves using the link I provided and ask questions if they still have concerns.
My purpose was to quickly alert people that there is a new study indicating there are serious risks (we don't hear about them often, if at all) with dapsone- a newer drug being used recently with no FDA or other approval for this purpose- that many aren't aware of, including the doctors treating us.
And to let folks know that this study was done with long term combos of meds, unlike other papers on this topic, so it may more closely resemble what we are dealing with?
And, most importantly, to point out what T9im immediately "got", which was, and I didn't want to say it to blame anyone... but...
Often LLMD's make it very difficult and/or expensive for patients to reach them between appointments and can be very slow when getting back to them, IF they do.
This is very discouraging and often shuts down open communication which involves risks to the patients.
Personally I think that is a very bad policy. In my opinion, and I go overboard protecting our Lyme doctors, but they are paid enough to address patients concerns and should be doing a better job of it.
And many patients feel bothering their LLMD with constant questions is overkill or at the least pushing their luck, but sometimes it can be important to take note of and use this kind of info as a basis to make that contact. (Raise awareness in general.)
So, if you'd like a word by word break down on this study, sorry, it was not my intent to provide that info and this is not the place to be looking for it.
Mr. Fitzgerald said.. "You have to consider these things before jumping the gun and just saying 4 people died in an 18 person study."
Yes, I did consider these things. And no, I don't have to make my post specifically word for word to suit you or anyone else. If you'd like to point that out after reading the study, certainly feel free to add to the discussion.
Mr. F said.. "This is one of the more harshest studies done, probably not a good comparison to some of the other studies done on Dapsone."
Sorry, I disagree. It is a three year study that involves people on multiple antibiotics (combos), for long periods of time, and involves people with a specific illness.
So to me, it can be more likened to what we are doing than the other studies.
Mr. F said... "Dr. H only recommended being on the drug for up to a year."
Why? Does he have any science to back up that opinion? Has he even concluded his clinical trial and published the results? He is guessing. And that's fine, but should not be carved in stone or speculated on or be considered a fact until all the results are in.
Mr. F said... "Still interesting study nonetheless, I just hope you're not misinterpreting the numbers... I'm reading what you're reading..."
I understand the study, the numbers, the disease in general and pretty much the patients too. But, thank you for your concern.
Next time you'd like more info shared on a topic, please feel free to do so, but don't falsely accuse others of leaving out things that YOU may think are important. Just add them in as you feel necessary.
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