Anyone else w/ CLL getting rashes? I need your feedback

[Loulou46]

I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it.

I would love to get anyone's feed back since my 6 month checkup is coming up. I want to press this issue with my doctor, because he hasn't given me any explanation or even thinks there is a connection I think. I was sent to a dermatologist, given and steroid cream. When it comes back all I get is a... "hmmmm" from my doctor.

Cindy

[Penkman]

Hi Cindy,

I developed a rash all over both legs during FCR treatment last year. I still have it although very much reduced. My haematologist says it is psoriasis. My skin is very dry particularly on my lower legs and feet. I have been prescribed an oatmeal moisturising cream to rub on which helps relieve the itching but does not reduce the rash any.

[Loulou46 in reply to Penkman]

Thanks for replying, I think this rash has something to do with our immune systems but not sure how.

When I first developed this rash, the steroid cream made it disappear for 2 years, then it came back in just a little spot on one leg for several months then gradually got bigger, then when the second leg started, I got another steroid which worked again. Then a couple of years later I got it back same way, but this time my family doctor gave me a steroid cream that didn't work.

My cousin who has psoriasis says that they outlawed a certain steroid cream because it causes cancer. (That was probably the one that worked).

I agree that cream w/ oatmeal works. I religiously use Eucerin w/ colloidal cream and it helps with the itchiness.

[Penkman in reply to Loulou46]

I have been prescribed 1% hydrocortisone cream in the past which also helps temporarily but cannot be used long term as it thins the skin.

[Justasheet1]

Cindy,

I had the rash after BR treatment. I was given the cream as you were. My Dermatologist also suggested trying some selson blue as shampoo and bringing it down to the affected areas.

It worked like magic. I only use the steroid cream for my ridiculous reactions to mosquito bites now.

Jeff

[Penkman in reply to Justasheet1]

Hi Jeff,

I will give Selson blue a try. Which type do you use please as there are 9 different types listed on the Selson blue website?

[Justasheet1 in reply to Penkman]

I use the standard one, not extra strength. Just make sure it has the selenium listed in the ingredients.

I hope it helps. It worked for me and it's so simple to try.

[Loulou46 in reply to Justasheet1]

Thanks! I'll try Selson blue . I think there is one for psoriasis.

Cindy

[Justasheet1 in reply to Loulou46]

I use the standard strength. I hope it works.

[ygtgo]

Hi Loulou

I've had this for a few years now ... I'm still on watch and wait.

I don't drink much nowadays but when I do the rash 'inflames'. It seems to be almost exclusive in my legs.

ygtgo

[Loulou46 in reply to ygtgo]

🤔 you haven't been treated yet and you still have the rashes? I was thinking that it had something to do with the chemo since mine only showed up after treatment was over.

Cindy

[ygtgo]

No treatment as yet, but that's my rash in the photo.

I had it checked out at the dermatology dept at my hospital and by my GPs ... but they seem to be ... a) just guessing at what it is ... and b) not too concerned about it.

I've had various 'potions' and creams given to me to try, but it's made no difference.

I settled to make the most of it .. I started playing dot to dot

... the permanent marker wasn't a good idea though !

If you find anything that works ... ' eye of newt - toe of frog " let me know and I'll give it a go.

I've not been able to wear ma kilt for a while ... then again ... maybe it's for the best ... the last time I wore it I got arrested.

... damned high wind.

ygtgo

[Italianpainter in reply to ygtgo]

If you google CLL and skin reactions/rashes you may come across the articles I found that said 25% of people with CLL develop skin reactions. These reactions range from small red dots that are slightly raised, papules, which are fluid filled blister like bumps ( that's what I had all over), nodules which are very hard bumps without the blister or fluid tops, plaques like dry scaly patches or even open lesions. I was not under any treatment at the time and my oncologist had me see a dermatologist. She was not the brightest light I'd ever met. She kept insisting that these papules were bug bites. Excuse me, but I'ved lived with this body 72 years and I know a bug bite when I get one. These had no sensation. No itchiness at all. By the way the articles I read said that those of us who get skin reactions can also have exaggerated responses to bug bites. They itch like fire ants are attacking your body and I had 2 bites that swelled from my elbow to my arm pit and down my forearm and another that got me on the face which made that side blow up like a big red water balloon. Needed prednisone to treat both.

Back to the rash. A biopsy was done and the results were that this was an unspecified urticaria (hives) likely due to an internal process and the fluid was lymphatic but no cancer cells were found. I'm a nurse so I looked at that report and asked myself was this some kind of allergic reaction and if so shouldn't I be taking antihistamines? So I started on my own. I got up to 4 doses of antihistamines a day. Initially I used benedryl 25 to 50mg 4x/day. Amazingly it did not make me sleepy. I got a second opinion. And that dermatologist knew that CLL patients sometimes get rashes and Yes, the treatment was antihistamines in large divided doses throughout the day. The anti histamines worked, at least for about a year. Cleared up the rash. and since I have chronic sinusitis, the antihistamines helped clear up my drippy head very effectively.

So find a dermatologist who knows something about the connection of CLL to skin rashes and try antihistamines. It's one of the few drugs that won't hurt you and are over the counter.

Hope this information helps. Stay safe and strong. This too shall pass.

Pat

[lankisterguy Volunteer]

I have had a rash on my legs, arms and torso (mostly small red dots connected in a web pattern) since just before my diagnosis in 2008. Each of the 4 times I was treated for my CLL it got worse, but Ibrutinib made it much worse- painful & itchy.

Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoidies. The common result was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

In winter - dry cold weather, if I break out, I use Triamcinolone Acetonide for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

The most recent diagnosis by a research pathologist eliminated CTCL and it's cousins, but attributed it to T-cell Dyscrasia.

ncbi.nlm.nih.gov/pubmed/176...

Len

[Loulou46 in reply to lankisterguy]

T-cell Dyscrasia huh? Thank you! I will bring this up with my doctor at my next appt in august and I will repost any updates.

Cindy

[lotn9]

Hello all, about rashes and such. I have a double whammy apart from CLL (in remission thankfully) I also have Darier's Disease which is a mutation of Chromosome 12, it causes dryness, itchy, rashes, and sometimes pain, it also hates sunlight and stress. Although the remission is wonderful, I still have those little bruises come up, especially on my inner arms, each one brings the usual fears, next apt is in August which is the first one after six months. Hope all of us get better and stronger every day.