Comment from: Giggi 65-74 Female less than 1 month Patient Published: June 08

I have had many side effects!! Stomach problems muscle soreness overall feeling bad. I just took 3 pills. 100mg. reminds me when I was on chemo when I had breast cancer. It did heal my breakouts but it made me so ill!

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Comment from: ernie 65-74 Male 5 to less than 10 years Patient Published: October 22

Have linear IGA disease for 6 years. Took over a year to get accurate diagnosis and start dapsone. Very effective but but was getting less so. Started minor dose of CBD ( the non hallucinatory form of marijuana) and it extends the effectiveness of the dapsone so I do not have to increase the dosage for flares nearly as often, which keeps anemia in check. My canabis specialist doctor is watching this with great interest. There is a max. dose of dapsone that can be tolerated so this is reassuring.

Related Reading: dapsone | marijuana

Comment from: 25-34 Female 1 to 6 months Patient Published: April 02

I was on 100 mg twice a day. I ended up in the hospital with Methemoglobinemia, which is a rare side effect of Dapsone. Untill that point, my pain and swelling was relatively controlled.

Related Reading: methemoglobinemia | dapsone

Comment from: alphagal 55-64 Female 6 months to less than 1 year Patient Published: December 01

prescribed dapsone for pemphigoid. red blood cell loss, anemia and yellowing of skin. Reduced by one to 50mg. tired and fatigued. Now forgetful and anxious. Blisters have been reduced but never gone away. I didn't expect the mental effects. Worried because I have important job and am not old.

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Comment from: msh466 55-64 Male 10 years or more Patient Published: February 22

Dapsone started at 25 mg for DH and never increased dosage. I have an occasional break out, but soon clears. I have been on this medication > 10 years, with lower than average WBC

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Comment from: Jefferson 55-64 Female 6 months to less than 1 year Patient Published: January 13

I have had Dermetitis Herpetiformis for the past 30 years. I had it about 25 years ago all over my body (except face, neck and hands)I was covered everywhere else. I was like that for over a year and that is when I received my diagnois and starting taking Dapsone. Within a month I starting clearing up and he went away for 20 years. It has started to come back (not quite as bad as 20 years ago) but I am seeing spot break out on leg and arms. I am back on Dapsone but it is just holding its own. I can't quite get rid of it but it livable.

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Comment from: Fish 45-54 Female less than 1 month Patient Published: January 01

I had severe shortness of breath starting my 3rd week on Dapsone. Once my Pulmonologist had me stop the drug it took a full 10 days for the shortness of breath and my pulse ox to rise to normal.

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Comment from: Fish 45-54 Female less than 1 month Patient Published: December 13

By the 2nd week on Dapsone for prevention of pneumonia. (I was on Bactrim DS successfully for 2 years but due to needing another daily drug that interacts with sulfa drugs, I had to be sweitched from Bactrim to Dapsone.)I developed low oxygen levels and shortness of breath.I have a lung disease, that is why my specialist wants me on a pneumonia preventative drug. by week 3 I was using my 'night time only oxygen' during the day. When I got to see my lung doc the shortness of breath was horrible. He tested me thoroughly and said hands down 100% the shortness of breath was from Dapsone.I stopped it right away and was in bed for 6 days on oxygen until the shortness of breath finally subsided. (9 days after I stopped the drug.)

Related Reading: dapsone | prevention | pneumonia

Comment from: Paul 45-54 Male 10 years or more Patient Published: October 10

After months of doc visits and blisters and intense itching I was diagnosed with DH 24 years ago. I've been taking half a 100mg tablet of Dapsone for the last 24 yaears. love it. Cannot take NSAID's with it though. DH symptoms get 10 times worse if you take NSAID's. I suffer a drug induced Hyposensitivity with the two.

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Comment from: s.lettermanyahoo.com 45-54 Female 5 to less than 10 years Patient Published: August 27

dermatitis herpetiformis is what the Dermatoligist said I have caused by celiac. Of course I have had the biopsy, blood work, light down the throat so they could biopsy stomach all said celiac. Don't understand how one becomes allergiac to wheat after 50 yrs. Oh well I have taken Dapsone 100 mg for 5 yrs & I thought it was a wonder drug. I have celiac and am in the 20% that get the blisters (elbows,legs,but checks,& eyelids). Now I have been told I have medically induced Lupus which has caused a lung disease because of this drug. I was taken off Dapsone & the blisters came back within 2 days. Started a new drug Sulfasalazine 1000mg twice daily. Just started so don't know if it's going to help will let you know. It will take a long time for the blisters to heal (diabetic also) & I hate the scars they leave. The lung Dr. want do another cat scan for lungs till November as Dr. says I have to be off Dapsone 3 mths to see if it is Dapsone causing the problem but according to them Family Dr. & Lung Specialist it's the only drug I take that can cause the problem. I have checked for this side effect but so far nothing. Help if anybody has went through this as I am a little scared. I now have to sleep wiyh oxygen & use oxygen when I am doing anything as oxygen level drops to low. I am only 53.

Related Reading: dapsone | lupus | scars

Comment from: Marv 65-74 Male 1 to 6 months Patient Published: May 25

Over a year ago I developed hives that nobody could effectively diagnose. Finally, my allergist gave it a name, Chronic Idiopathic Urticaria, which essentially means hives that can't be diagnosed! Since Xolair, a subcutaneous shot that was developed for asthma, had been proven to be effective against CIU but had not yet been approved by Medicare, he started me on Doxepin (which did almost nothing). When Xolair was finally approved by Medicare I started taking shots monthly. That worked for about 9 months before I started getting hives again. During a visit to my family doctor (for an unrelated issue) she suggested trying Dapsone. I mentioned it to my allergist and he agreed. I have been on 50 mg Dapsone nightly for almost two months and I am 99.9% symptom free. Contrary to other reviews, I have more energy all day. My only complaint is that I am having trouble falling asleep. Once asleep, I do pretty well all night.

Related Reading: hives | xolair | asthma

Comment from: dmacbolts 19-24 Female less than 1 month Patient Published: November 12

Received Dapsone 100 mg/daily for DH. Worked great, was getting weekly labs taken no problems. Then about 3-4 weeks into it my neutrophil count dropped. My Dr. had to D/C it due to risk of infection. Now I don't know what to do to control this intense itch! If anyone has used anything else with success please let me know! Thanks Dan

Related Reading: dapsone | itch

Comment from: Blue 25-34 Female 1 to 6 months Patient Published: March 18

I have been taking Dapsone to prevent PCP for about three months. I have Lupus and ILD (Interstitial Lung Disease) and can't take sulfa drugs (I have many antibiotic allergies). The immunosuppressive meds I take for my Lupus make me more at risk for this type of pnuemonia. So far, no side effects at all. I take it with my other meds and have been fine. I will be on this med for the rest of my life so I guess I will check back in from time to time to update this.

Related Reading: dapsone | lupus | interstitial lung disease

Comment from: Wendy 35-44 Female less than 1 month Patient Published: September 22

I had hives for 4 months nothing prescribed worked to get them to go in. Dermatologist performed a biopsy of one of the hives and I had high amounts of neutrophils showing in biopsy. So she started me on Dapsone 50mg a day. almost immediately I was winded, tired but the hives went away. I was having blood drawn weekly by the 3rd week of blood being drawn my white and red blood counts went to low. So I am now off of the Dapsone but still tired, winded easily and have had a red prickly itchy rash since the first week of taking it. Hives are still gone but scared they will return. I had them everywhere and even internal inflamation. I dont have a particular diagnosis at this point.

Related Reading: hives | dapsone


Rosacea, Acne, Shingles, Covid-19 Rashes: Common Adult Skin Diseases See Slideshow
Comment from: 45-54 Male less than 1 month Patient Published: July 17

I was diagnosed with DH and prescribed Dapsone. Within 48 hours the lesions and itching started to subside. Within two weeks the lesions had all but disappeared and the itching was gone. I have had no side effects from Dapsone. It is truely a miracle drug.

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Comment from: shelley 35-44 Female 5 to less than 10 years Patient Published: May 19

I have been using dapsone for 7 years for dermatitis herpetiformis. I've had celiac disease for over 20 years and suffered with this rash for 13 years before my doctor would send me to a dermatologist (she was concerned about the anemia it can cause.)It has been a miracle drug for me. I started out at 100mg/day. I took it for 11 days and then broke out into a peppery body rash. I was told by my pharmacist to stop using it until the dh rash appeared again (it took about 4 days). I take on average 3 pills/week. This keeps it under control. Unfortunately following the gluten free diet does not cure the rash no matter how strict I am. The dermatologist says this happens to a small percentage of celiacs. I was recently diagnosed with vitamin B12 deficiency and now take monthly shots. I had started taking synthroid for thyroid issues and this seemed to make the dapsone less effective even though I took them a few hours apart. This made me need the dapsone more often and the peppery rash came back very badly.I stopped taking the synthroid and am back to needing the dapsone only 3 times/week.My doctor will probably not be happy with me but I'd rater go without synthroid than discontinue the dapsone. I think I would go out of my mind with the itching and blistering. Has anyone else had adverse reactions with synthroid and dapsone?

Related Reading: dapsone | celiac disease | b12

Comment from: Emily 13-18 Female 1 to less than 2 years Patient Published: December 14

Ive have lekocytoclastic vasculitis for 4 years and Ive been on dapsone for nearly 2. It prevents my disease from flaring up, which saves me a lot of pain, and a nice side effect is that it makes me acne free :)

Related Reading: vasculitis | dapsone | acne

Comment from: cekmal 45-54 Female 1 to 6 months Patient Published: October 27

I initially took 50mg a day with no noticeable benefits, after increasing to 100mg there has been an improvement in my vasulitis.


Medical Editor: John P. Cunha, DO, FACOEP

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