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Dapsone Reaction


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13 replies to this topic

#1 eatmeat4good

 
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Posted 17 February 2011 - 09:58 PM

I have been taking Dapsone 50 mg for about two weeks.
Yesterday I got a hive-like reaction on my hands and arms.

This morning my DH sores started hurting and swelling.

I thought I must have gotten gluten.

Later in the day I noticed my legs are just completely covered with pin point fire red raised dots. On my hips I have hive-like welts.

I had eliminated eggs from my diet and two days ago craved them so ate eggs.

When this rash appeared at first I thought it was from the eggs.

So when I got home today I vowed no more eggs. I ate and took my Dapsone.

Now my legs are completely itchy and my feet are swollen.

I googled the Dapsone reaction and it says something about the pin point red dots being a serious reaction and to call your Dr. immediately.

I called 45 min. ago and haven't gotten a call back.

I am absolutely certain this is a Dapsone reaction and I'm stopping the medication.

What I really need to know is should I take Prednisone to counteract this reaction?

I hope the Dr. calls me back.

I'm calling the pharmacist next.

I just wondered if anyone knows if Benadryl will handle this.

Scared - my skin looks awful completely awful. Red dots and welts all over. Swollen feet. I am retaining like 5 lbs of fluid. No fever.

Jeez. I should have known I wouldn't be able to handle the Dapsone.

Ah well, I tried. I'll let you know what happens. This is really crazy.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

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#2 eatmeat4good

 
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Posted 17 February 2011 - 10:23 PM

Still no call from the Dr.

The pharmacist said take Benadryl.

So far I have swelling in my feet and legs and red spots all over arms and legs.

I should have suspected Dapsone immediately when I broke out in hives yesterday.
I thought it was another food reaction.

I knew I was to be on the lookout for a Dapsone reaction, but I still blamed food allergies first.

I wish I hadn't taken the dose tonight.
It has like a 30 hour clearance time.

I'm gonna be miserable for a while.

Some of you know I was thrilled about taking Dapsone and it gave me great relief.

Until now.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#3 ravenwoodglass

 
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Posted 18 February 2011 - 04:58 AM

It is inexcusable that your doctor has not contacted you. This could be a serious reaction. If he hasn't called you back and the reaction hasn't resolved yet go to his office and demand to be seen. Here is a link to the NIH info on the drug and a link is there to report this adverse reaction to the FDA. Since your call hasn't been returned it is unlikely your doctor will report it so please do so yourself.

http://www.nlm.nih.g...ds/a682128.html
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 canutillo

 
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Posted 18 February 2011 - 05:17 AM

How are you today? If you haven't heard from your doc, you may want to head over to the ER. Drug reactions are not a good thing.
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#5 lovegrov

 
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Posted 18 February 2011 - 06:16 AM

It is inexcusable that your doctor has not contacted you. This could be a serious reaction. If he hasn't called you back and the reaction hasn't resolved yet go to his office and demand to be seen. Here is a link to the NIH info on the drug and a link is there to report this adverse reaction to the FDA. Since your call hasn't been returned it is unlikely your doctor will report it so please do so yourself.

http://www.nlm.nih.g...ds/a682128.html


Actually, it had been just over an hour since the poster called the doctor. If you're leaving a phone message, it's highly likely nobody would have heard it in that time. And if it's bad enough that it's truly an emergency, folks, do NOT call your doctor or go to his or her office. Call 911 or head to an emergency room, which is likely where your doctor would send you anyway if it's bad enough.

richard
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#6 Hopeful1950

 
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Posted 18 February 2011 - 07:30 AM

I am so sorry to hear about your reaction. I was really hoping that you would be successful with the Dapsone.

Ditto to what Richard said. If you feel like you need to be seen immediately, head for the ER, urgent care or call 911.

Regarding your question about Prednisone. My DH flared up alot when I went off Dapsone and I took a round of Prednisone to get relief. If your doc feels like Prednisone would help the drug reaction, you might kill two birds with one stone by taking a round.

Good luck keep us posted about your progress.
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#7 ravenwoodglass

 
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Posted 18 February 2011 - 02:46 PM

Regarding your question about Prednisone. My DH flared up alot when I went off Dapsone and I took a round of Prednisone to get relief. If your doc feels like Prednisone would help the drug reaction, you might kill two birds with one stone by taking a round.


I agree about the prednisone. Before we knew I had DH they would let me have prednisone about once or twice a year and it would give me some relief for a few weeks.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 ravenwoodglass

 
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Posted 18 February 2011 - 03:04 PM

Actually, it had been just over an hour since the poster called the doctor. If you're leaving a phone message, it's highly likely nobody would have heard it in that time. And if it's bad enough that it's truly an emergency, folks, do NOT call your doctor or go to his or her office. Call 911 or head to an emergency room, which is likely where your doctor would send you anyway if it's bad enough.

richard


I missed the time on the posts. Hopefully the doctor did call her back the next day or the doctors emergency service relayed the message. And you are right that the OP should have gone to the ER and hopefully they did.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 eatmeat4good

 
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Posted 18 February 2011 - 10:13 PM

Thanks for all your replies. Ravenwood, you are right and I will report it.

Not sure why you thought it had only been an hour Richard. The posts were written late last night.

The answering service paged my Dr. for 4 hours and they called me every hour to see if she called me back.

They were very helpful but she never did call. The pharmacist told me Benadryl should help and it did.

I wasn't having difficulty breathing but was covered in hives, but the Benadryl started to help so I didn't go to the ER. I have gone to ER before and thought I would be in for a $5000 charge for the same advice the pharmacist gave me. I went once to the ER at height of my Celiac, with nausea, vomiting, diarrhea anxiety and difficulty swallowing. They gave me IV fluids and Xanax and sent me home and billed me $5000.

So I avoided going to the ER. I would have gone if the breathing was involved.

So this morning when the office opened I called told them about the reaction and that I would like to know if I should start Prednisone. I described the bright red raised pinpoint dots that were all over my legs and body.
My legs were swollen and my eyelids too, but Benadryl seemed to be helping.

I heard NOTHING until 3:00 this afternoon. The nurse called me back and said, "The Dr. said she didn't prescribe you any medication, so she doesn't know what you are reacting to." I said, "Are you serious?It should be in my record."

She said yes she was serious, the Dr. said she hadn't given me any medication.

So I informed her the Dr. had put me on Dapsone for Dermatitis Herpetiformis and that it was 50 mg and I had been taking it for two weeks. Then I described my reaction again. She said she would call me back.

At 4:00 she called me and said, "The Dr. said you need to be evaluated by a Dr. so you should go to an urgent care clinic." I said thank you very much. I think the Dr. is right...I do need a real Dr.

I won't be seeing her anymore. But on a positive note, the reaction is subsiding on the Benedryl.
I called my old Dr. and will do a short course of Prednisone.

I called the office manager to let her know that I got no call from anyone last night even though the answering service assured me that they were contacting my Dr.. They wanted to blame the answering service. I said no the answering service was very helpful and kept calling me back to see if the Dr. had called. The office manager apologized and then I informed her that my new Dr. didn't even remember she had put me on the medication and I wanted to know why it wouldn't have been in my record. She didn't know but would try to find out.

I said that's ok, I will be picking up copies of my records.

Anyway folks, that was quite a ride- but I had two weeks of relief before I had the reaction.

Thanks for your support and your replies.
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#10 eatmeat4good

 
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Posted 18 February 2011 - 10:21 PM

I missed the time on the posts. Hopefully the doctor did call her back the next day or the doctors emergency service relayed the message. And you are right that the OP should have gone to the ER and hopefully they did.


My posts were written around midnight. The answering service was paging the Dr. directly for 4 hours. They have 24 hour on call for such emergencies.
I'm not sure why the time on my posts made it appear I had called the Dr. "only an hour ago"...when all your posts were written in the morning?

Anyway, it is over and I think that is the end of my story.
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#11 ravenwoodglass

 
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Posted 19 February 2011 - 04:04 AM

You should make an appointment soon with your old doctor and discuss the reaction with him. There may be some bloodwork that should be done just to be on the safe side especially if the doctor who prescribed the med didn't run any before the Dapsone was prescribed. While hives is a typical allergic reaction the pinpoint raised hemmorages are not. Chances are everything will be fine but it still would be a good idea to check with your old doctor to be sure.
Do get full copies of those records and write down the time frame for the calls and the call backs from the answering service and let the head of the medical association that this doctor works with know what happened.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 running_girl

 
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Posted 19 February 2011 - 10:44 AM

Eat_Meat - I'm so Sorry to hear about this reaction. Not only was your experience very scary, but I can only imagine how disappointed you must be to be unable to tolerate the Dapsone. I will be interested to know if the DH returns and if it does how quickly it happens.

You are wise to move on to a different doctor. It must to horrible to have to consider the costs of treatment at a hospital while having such a serious reaction.

In Canada health care is free, but wait times can be frustrating. I'm still waiting for the results from my biopsy.

I hope you continue to heal quickly.
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#13 Hopeful1950

 
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Posted 20 February 2011 - 11:17 AM

eatmeat...what a nightmare! Is it any wonder that it takes so long to get a correct diagnosis for celiac/DH? When doctors can't even keep track of what they prescribed, return phone calls etc? I am so sorry that you had to go through that.

I am a surgeon's daughter and he would be turning over in his grave to hear the things I have heard about on these forums, not to mention all that I have been through with dermatologists...

It is a good thing that you got the prednisone because the DH will flare from coming off of the Dapsone. The prednisone will get you through that as well as the other reaction you had.

Take care of yourself.
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#14 lovegrov

 
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Posted 20 February 2011 - 07:27 PM

The time stamp on the top two posts show they were 25 minutes apart. That's what I was commenting on.

richard
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