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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kathyjjb | @kathyjjb | Jul 27 6:02pm

In reply to @debw1017 "@kathyjjb I haven’t heard of the lung “restructuring “. Do you have any info on it?..." + (show)

@debw1017 My 2 sources are my pulmonologist and free chat gpt. I think success has a lot to do with clearing impacted mucus and if the airways can recover. My challenge is the clearing of what's impacted. I can't use the vest, and nebulizing with ACT, just isn't enough. I have no idea on the stats on the chance or extent of lung restructuring after 12-18 months, but I have heard of people's PFT improving.

kathyjjb | @kathyjjb | Jul 27 6:17pm

In reply to @vstankie "@kathyjjb my primary doctor says my bp is elevated and wants to put me on blood..." + (show)

@vstankie I've only heard that Brinsupri "slightly elevates bp". Not sure if that would require medication, maybe if someone was borderline? I would take the high BP medicine as well. When I started Brinsupri, I got an in-home BP monitor, but I believe it's reading on the low side. I need to check it against another one.

Cathln | @Cathln | Jul 27 6:19pm

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

@atkins10001
I had a very itchy rash on both arms and one leg. I also have small dry eruptions on my legs. My hair did fine until April. Now, it falls out and I am really bald in spots.
I saw my Pulmonologist Friday, he told me to stop taking it. I am extremely sensitive to at least 30 drugs, so this isn't a huge shock. Losing hair is!
Oh, I was only on 10mg for 6 months.

michelercccb | @michelercccb | Jul 27 8:06pm

In reply to @tconz "I have been on Brinsupri 25 for 1 month and have rashes on both lower legs...." + (show)

@tconz thanks for the comment as I found it helpful. I am so sorry you’re having so many skin issues. It sounds like the medication is helping. I hope they can find a way for you to stay on it. I am currently waiting to get in to NJH. Could you tell me how long it took you to see a clinician once you did the nursing intake interview? I am just starting this journey and it seems to move so slow slowly.

tconz | @tconz | Jul 28 7:40am

In reply to @michelercccb "@tconz thanks for the comment as I found it helpful. I am so sorry you’re having..." + (show)

@michelercccb It took around 3 months but that is because I requested to see specific doctors. I go every 6 months and I just got a call from them about scheduling my November visit. You will be in excellent hands at NJH.

michelercccb | @michelercccb | Jul 28 10:00am

In reply to @tconz "@michelercccb It took around 3 months but that is because I requested to see specific doctors...." + (show)

@tconz thank you so much! I am an ICU nurse and it is getting so hard to work! I am desperate for an intervention. Hope all goes well with you in November.

tconz | @tconz | Jul 28 5:40pm

In reply to @michelercccb "@tconz thank you so much! I am an ICU nurse and it is getting so hard..." + (show)

@michelercccb Thank you so much and again you will be in excellent hands and I am so glad you are going to NJH to be evaluated!

angelsnyder38 | @angelsnyder38 | Aug 2 1:22pm

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

@scoop I cut my 25 in 1/2 and the rash is going away

angelsnyder38 | @angelsnyder38 | Aug 2 1:25pm

In reply to @michelercccb "@tconz thanks for the comment as I found it helpful. I am so sorry you’re having..." + (show)

@michelercccb I cut my 25 in 1/2 and the rash is going away. I did have a biopsy (punch biopsy) and it came back the rash was medication induced

angelsnyder38 | @angelsnyder38 | Aug 2 1:28pm

UPDATE, I cut my 25mg in 1/2 and the rash is going away. I guess I need to get on 10. Also my punch biopsy came back and stated the rash was from a medication although it did not say which one but the Brinsupri is the only thing that changed. I hope I continue to get the same great results on 10mg