Constant skin rashes

[cartwheels]

As some may know I have been fighting constant skin rash since November, antibiotics help clear it up along with steroid cream but not quite get rid of it . Then a few weeks later I'm back on the same treatment. Attended AE last night due to it spreading on my body and down my arms skin inflammation and itchy rash as before possible folliculitis and the doctor said I think your immune system is the problem. Now I have lost wieght and been on ibrutinib six years and my lymphocytes have increased last two visits a little. But I have no enlarged nodes etc that I can feel or notice so maybe it's not my CLL ? Trying to get more blood tests etc but the NHS for me is patch and go with really looking for the problem which is driving me mad .Dermatology put it down to vasculitis due to my covid vaccine in November when this started but I'm not sure . All I know is I'm like a dog chasing it's tail and getting nowhere. Any observations would be appreciated.

[Jm954 Administrator]

I'm sorry you're still going through this. A skin biopsy might be the only way to resolve this. Perhaps worth discussing with your doctor?

Jackie

[cartwheels in reply to Jm954]

I have been to and from my doctors , dermatology and just seem to get patched up and sent on my way. They took a swab the other day and got some bloods ordered and also brought forward my next consultation so hopefully moving forwardThanks

[Hoffy]

has your IgE been checked? It is suppose to be around 100 but mine keeps rising and is up to 6000. If I take time off Imbruvica I get very itchy.

When I was on I plus V it came down to normal.

If you IgE is very high there are drugs that are suppose to help bring it down. I have not tried them since I have been doing ok with Imbruvica and stroid creams.

Feel free to contact me if you want to discuss further.

Be well ,

Hoffy

[cartwheels]

Sorry for a picture believe me this is one of the nicer ones , could this be fungal?

Rash under armpit ,. I wonder if this could be fungal)

[SofiaDeo in reply to cartwheels]

It could be, but it could be something else. I had skin problems on ibrutinib, biopsies showed they were eczematous lesions. I did eventually get a fungal as well as MRSA infection in the irritated skin.

[cartwheels]

This is what I think I have ,both bacterial and fungal. It all started with flu and a Steph type body rash and the antibiotics never quite cleared it ,so probably by not having a long enough course 3 times now it's not reacting well to the original antibiotics. They have now changed to another type but again only a week course so I bet I will be back to square one in a few weeks

[Hoffy in reply to cartwheels]

Fungal infections can happen on imbruvica.

I get itching in my groin mostly

Be well,

Hoffy

[skipro]

wow. Hard

I had a rash like that for a year. All that helped among all manner of treatments was

Aveno oatmeal lotion

Baby soap for shower

Air drying. Or no rubbing with. Towel

Using the least abrasive tee shirt under all clothes

If it’s infectious

Always shower after sweating

Bath 1-2 times per week for 20 minutes after having added 1/4 cup of Clorox to the bathtub water.

I agree you should get your CLL checked again with flow cytometry and the usual work up that your doc know how to do.

God bless

Skipro

[carnvellan]

You've not said if you've had a skin biopsy. It was very useful when I had an all over body rash when on Obinutuzumab and Venetoclax as it was able to identify whether CLL was in the rash - it wasn't. The Dermatologist, who specialises in haematological conditions, said the CLL does give patients rashes which hang around for a long time. She treated me with steroid cream and the rash went when I finished the treatment course.

[cartwheels in reply to carnvellan]

Well although we get so called free health care in the UK. It's not to the standard in the US here it is very much patch up and send off . False economy but that sums up the NHS I have been to the doctor five times hospital twice and dermatology and apart from examination and giving me creams ,pills etc no looking for the cause which is very frustrating. I am pushing now for more so hopefully soon I may have some answers.

[cartwheels]

Update, dermatology called me today and have said they want to stary me on oral steroids tomorrow,so hoping this may bring it under control

[Vlaminck in reply to cartwheels]

Glad someone got back to you!

[bdm0911]

I am so sorry you are experiencing this. I too had constantly itching skin, told it was folliculitis and put on antibiotics. Nothing I tried seemed to work. I switched soap, laundry detergent, dryer sheets and anything else I could think of, with no relief. I finally went to a dermatologist and heard the magic words, " You aren't leaving here until we have an answer". She performed a biopsy on one of the bumps. The answer was a reaction to my medicine. Imbruvica. My heart was broken. After taking Imbruvica almost 7 years it was time to switch. I started Calquence about 4 months ago and seem to be tolerating it well. I wish you the best and hope you find answers and relief soon.

[cartwheels]

Thank you so much for your input. Attended hospital yesterday and saw my specialist and dermatology,good news is it's not my CLL as I'm holding fine . Dermatology have our me on 6 x steroids a day and strong antihistamines and my consultant has told me to stop taking aciclovir as they can cause rashes longterm use . So we see where we go at present the hospital are still putting the cause down to vasculitis caused from my 6th covid vaccine.

[mdsp7]

Maybe you have a 5G phone and the energy is being deposited in your skin? I got an RF radiation detector, and took measurements around my yard and living space. I now use a wired connection and seldom use my mobile phone. I shield the area near where we sleep and where the router is (we can't turn off the wifi) from excessive RF/microwave radiation with swiss shield fabric. Since doing this, my blood counts have decreased. And my sleep is better.