Brinsupri Rash

Posted by angelsnyder38 @angelsnyder38, Jul 24 11:06am

I have mild BE and EA, have been on Brinsupri 25mg for about 4mths. It has helped tremendously. After the first month I developed a severe red bumpy rash on both lower legs which eventually went up my thighs and severe skin thickening on my feet. I’ve discontinued the Brinsupri for about 4 days now (on direction of my Dr) The rash seems to be drying up. I don’t want to stop it due to it helping so much. Has anyone went down to 10 with same results and rash went away. My cough and chest congestion are returning also after being off of the Brinsupri

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scoop | @scoop | Jul 24 11:56am

Brinsupri 10 mg generally has fewer side effects than the 25 mg dose, particularly for skin side effects. This was shown in the clinical trial data.
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm
I'm on 25mg doing ok so far but I am keeping an eye on my skin. Since you're getting benefits from Brinsupri, if it were I, I would try the 10 mg. Hope you hear from others as I know there have been a few who have dropped down to the lower dose.

angelsnyder38 | @angelsnyder38 | Jul 24 12:38pm

In reply to @scoop "Brinsupri 10 mg generally has fewer side effects than the 25 mg dose, particularly for skin..." + (show)

@scoop Thank you

maryjanechilds | @maryjanechilds | Jul 25 6:50am

I took 25 mg Brinsupri and also developed a rash on my lower legs and severe dryness and cracking on the bottoms of my feet. The cracking was so bad that my feet bled. I reduced the dose to 10 mg and the rash and dry feet have improved enough that I am satisfied to stick with the 10 mg. I hope the 10 mg will offer the same long term benefits of the 25 mg. I must say Brinsupri has been a miracle drug for me-improved energy and reduced infections. I am very thankful to have this drug.

vstankie | @vstankie | Jul 25 7:56am

I am on 10 mg of brinsupri, and considering going to 25 mg. I've had no side effects. So now, i'm wondering whether I should just stick to the 10 mg. Has anyone had any side effects when going from 10 mg to 25 mg?

tconz | @tconz | Jul 26 7:44am

I have been on Brinsupri 25 for 1 month and have rashes on both lower legs. I have also had 5 squamous cell skin cancers this month alone which has never happened before. I've had skin cancer before but not this many in a short period of time. I even had to have Mohs surgery last week on my thumb and index finger and the other 3 are on my left leg. I really wanted to be on Brinsupri but feel my doctor at NJH will either try a lower dose or take me off for a while.

kathyjjb | @kathyjjb | Jul 26 2:13pm

In reply to @vstankie "I am on 10 mg of brinsupri, and considering going to 25 mg. I've had no..." + (show)

@vstankie I have been on 25 mg for 5 months and have experienced itchy skin, 1 actinic keratosis lesion (removed), and slightly elevated blood pressure. Last week, I spoke to my Pulm DR about lowering my dose to 10 mg and he has urged me to stay on the 25 mg for at least a year. Lung restructuring takes 12-18 months to start on the 25 mg. That said, I want to stay on the 25 mg for at least another year.

debw1017 | @debw1017 | Jul 26 3:33pm

In reply to @kathyjjb "@vstankie I have been on 25 mg for 5 months and have experienced itchy skin, 1..." + (show)

@kathyjjb I haven’t heard of the lung “restructuring “. Do you have any info on it? TIA!

vstankie | @vstankie | Jul 26 6:11pm

In reply to @kathyjjb "@vstankie I have been on 25 mg for 5 months and have experienced itchy skin, 1..." + (show)

@kathyjjb my primary doctor says my bp is elevated and wants to put me on blood pressure medicine. I didn't know Brinsupri could cause elevated blood pressure. I won't stop taking the Brinsupri because my lungs are so much improved. I'm not coughing, my brains out. I'm not producing gobs of sputum, and my lung don't crackle when I'm breathing .

atkins10001 | @atkins10001 | Jul 27 8:00am

I also developed a red itchy bumpy rashes back upper and lower , arm then start on face . The rash got worse even after lowering from 25mg to 10.
I’m also sad because the Brinsupri was helping with flare ups . I was in the medicine about 4 months. My doctor recommended stopping the medication.

scoop | @scoop | Jul 27 11:11am

In reply to @atkins10001 "I also developed a red itchy bumpy rashes back upper and lower , arm then start..." + (show)

@atkins10001
Sorry to hear this. Don't despair. Perhaps you can join a clinical trial for another BE drug currently in development. They are actively recruiting now. True, you do not know if you'll get the drug or placebo. You probably will be able to tell pretty quickly.

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