Spots that are turning nasty! Dapsone

[Broadbent]

Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long time to clear. Apparently this drug helps with the very bad cough that I have all the time along with heavy mucus. Has anyone out there had a problem with Dapsone and what would replace that? He has also told me that it helps with the pneumonia side of things. I have heard the name of Wellvone for dealing with my problem. Has anybody out there received this drug and what reactions if any did you have? Also is there anyone out there that is not overly happy with with treatment they are receiving and what would be the way forward with regard to finding another haematologist. I am already on Ibrutinib and privigen and have been for nearly two years. Thanking you in anticipation. Really sad to hear about Chris. He will be greatly missed.

[eric72]

Yes I was given Dapsone whilst having B&R Chemo. Within 24 hours I was in a bad way, the chemo had to be stopped and my blood oxygen levels fell dramatically. I was told I must never have Dapsone again, as it was turning my blood to a plastic consistency and not allowing the absorption of oxygen. It took about as week for my body to recover and it was a month later before I could resume chemo. Thankfully that was 18 months ago and I am fine now. Hope that you are able to find a suitable alternative. They put me on a course of Co-amoxiclav. Regards Eric.

[Broadbent in reply to eric72]

Hi Eric, thanks for replying.How does the Co-amoxiclav work, in other words what is it meant to do?

[AussieNeil Partner Administrator in reply to Broadbent]

I think Co amoxiclav is the broad spectrum mix of clavulanic acid and amoxicillin antibiotics?

[Broadbent in reply to AussieNeil]

Thanks Aussie Neil. I don’t think that is what is required. Wellvone may be the next step if they prescribe for PCP.

[livinglifewell in reply to Broadbent]

The drug that worked for me when I had PCP was sulfamethoxazole and trimethoprim, double dose of Bactrim combined. I take single dose now prophylactly to prevent the PCP from reoccurring while I am on ibrutinib.

[Penkman in reply to eric72]

Hi Eric,

During the 5 months I was undergoing chemo FCR, I had a cough all the way through producing a lot of mucus for most of the morning but clear in the afternoon and evenings. I had been put on Co-trimoxazole to help prevent/clear any lung infection but the cough persisted. Following a post chemo CT scan, it was discovered my cough was due to a lung condition called bronchiectasis which dilates the bronchial tubes and prevents the natural clearing of mucus by the body's own mechanism, particularly when lying down at night. The condition cannot be cured and following several subsequent hospital stays due to lung infections I was prescribed Carbocisteine which is a drug which thins the mucus making it easier to cough up and help in preventing it accumulating in the bottom of the lungs causing infections. It may be worth checking out if you have this condition.

Since being on Carbocisteine for over a year now, I have not had any further lung infections and can clear my lungs in a morning with just a handful of coughs over a 15 minute period.

The FCR only lasted 2 years and I am now on Ibrutinib and in recent months, my haematologist has put me on the Co-trimoxazole antibiotic as a preventative measure against developing infections particularly of the lungs due to my lymphocyte and neutrophils being very low. I take two tablets, on three alternate days per week and touch wood, have not had any further infections or side effects.