SKin papuals, spots

[cartwheels]

As many of you may know I have had issues for last 16 months with skin papuals, spots. Initially they suspected my COVID booster and dx as vasculitis. But now after many hospital visits and biopsies they finally have a DX of cll infiltration and small cell lymphoma infiltration of the the skin . During this time I have gone from being healthy to having all my bloods go the wrong way and at my last heamotolgy visit two weeks ago it was suggested that after 7 years on Ibrutinib that they are looking to switch me to V and R . Not sure as of yet what or if any treatment will be required for the skin issues or if the switch of treatment will correct this . Only got confirmation yesterday from dermatology and they are now in discussions with heamotolgy for what is next . I'm glad I have some answers as this has been very challenging especially being so visible on my face when they break out . One thing I have noticed is twice in this period I became very ill with flu like virus and both times my skin improved 90% as my immune system kicked into overdrive.

[Newdawn Administrator]

I’m glad they’ve managed to identify the cause cartwheels and whilst I cannot offer any words of wisdom on this tricky issue, I just wanted to send support because this must be a thoroughly miserable condition for you.

Best wishes for a solution,

Newdawn

[cartwheels in reply to Newdawn]

Thanks, and it really has been miserable, managing this has been emotionally tiring and although it's now came out as CLL related 16 months of dermatology trying different things, and me playing doctor Google in search of answers and ways to help had not been easy, far worse because it's so visible then my CLL itself which of course is invisible. And this really has made me think of all the other skin conditions others suffer with and how hard it is to deal with.

[Steffi50]

Gosh. I am getting papules too and these only started in the 7th month of treatment, Asked my haema at the last appt last Thursday and they didn't seem to think it was important but I might raise again.

[Hoffy]

very sorry to hear this, but like someone else said , at least your getting closer to understanding the situation and hopefully there’s a better treatment.

Be well,

Hoffy

[81ue]

re "I became very ill with flu like virus and both times my skin improved 90% as my immune system kicked into overdrive."

I've noticed this kind of effect too for skin health. I tend to have rosacea spots that look like they finally heal during flu time.

[cartwheels in reply to 81ue]

It sucks doesn't it lol 🤣 to make are ski. Better we have to become ill 🤣 oh well .

[81ue in reply to cartwheels]

Yes, we become 'pretty ill' .

[SofiaDeo]

Rituximab has been used for certain types of skin conditions in patients not even having CLL. So if you have a known skin involvement of CLL, the V&R may be more helpful. Rituximab itself can cause some skin problems, though.

I do think treating your CLL will resolve the skin issues.

[cartwheels in reply to SofiaDeo]

Yes , I'm aware of that and even suggested using R before I got my biopsy results as I researched lots over the last 15 months whilst waiting for a DX on my skin , they did suspect lymphatiod papulisis at first and one of the treatments for that is R . And I'm pretty sure they already knew of my DX before they told me this week, hence why heamotolgy suggested changing treatment to V and R at my last appointment two weeks ago.

[Thursday45]

Sending good wishes and support. Hopefully, things will start to improve for you, now.

[Big_Dee]

Hello cartwheels

Not surprised about use of V&R. Rituxan is used to treat some arthritics. I had B+R treatment for CLL and as a side benefit my Psoriasis part of arthritis was cured for 2-3 years. Blessings.