Update on skin issues

[cartwheels]

Got a phone call to have more biopsies today and went in to dermatology where they took six swabs for bacterial and fungal from different body sites . And 4 punch biopsies from chest,neck chin and cheek. The dermatologist told me they are considering adding Rituxabnab to my ibrutinib but want to rule out any other possible infections etc first.

She also went on to say she took up my case with her senior consultant who advised her to add my monthly MDT meeting to the regional healthcare as well as the hospital I'm treated at . And said she thinks rituxabnab would help but heamotolgy are not keen despite my bloods going the wrong way over the last 19 months consistently. But because I have no obvious b cell involvement they want to continue on Ibrutinib which I have been on for 7 years now . So at least something is being done . Will be a few weeks before results she requested emergency two week turnaround but this is the NHS so I can expect 8/10 weeks lol. And see what happens if anything.

[Hoffy]

fungal infections can happen with imbruvica.

Hoffy

[newyork917]

I have been dealing with rash issues for the past two years and have undergone more than 7 skin biopsies. Despite having the biopsies examined by top hospitals in NYC, no one could identify the cause. I decided to consult a rheumatologist. Although the rheumatologist couldn't provide a definitive diagnosis, she mentioned that my symptoms could be related to CLL affecting my immune system. I also experienced joint pain and mouth sores on two occasions.

I tried using prednisone a few times, but it wasn't a sustainable solution. A month ago, my rheumatologist prescribed hydroxychloroquine, and to my surprise, my rash has improved by 95% already, even though it may take 3-4 months to fully work. Hydroxychloroquine is commonly used for lupus and other autoimmune diseases, so it may be worth exploring. I'm still waiting to see how it progresses over the next few months, but it seems like it could be the solution to all my skin issues.

Based on my experience, I recommend consulting a rheumatologist. It's possible that you may have an autoimmune disease in addition to CLL.

[cartwheels in reply to newyork917]

Thanks for the reply and Information here in the UK I would find it hard to get hydrochloride. But it has made me think that it is known of the benefits of this drug with COVID and my rashes started after my 6th booster and the hospital themselves said as much back then. But are are saying my cll is a contributing factor.

[newyork917 in reply to cartwheels]

The UK brand name should be Quinoric. Hydroxychloroquine takes up to six months to reach the desired concentration in the body. People who took it after contracting covid didn't see major benefits. It benefited people who were already taking Hydroxychloroquine and contracted covid, which then reduced the body's inflammatory response. I would ask your doctor if they would consider it or sending you to another specialist. It is a much lighter medicine than rituximab