CLL with rashes, swelling and itching.

[WinJ3]

Just wondering if others with CLL have problems with rashes and itching?

[cllady01 Former Volunteer]

Winj3, you asked about this when you first posted 2 years ago. Have you had no help with it since then? Here is the post and replies your received at that time:

healthunlocked.com/cllsuppo...

[noeagaman]

I don't have rashes, but have had bad itching for a few months now. I posted about this very subject yesterday.

Chris

[WinJ3 in reply to noeagaman]

My itching is bad also.

Thank you

[Tommays56]

Hi Win

My CLL is considered mild and truthfully it is compared to the various problems that our hitchhiking with it

one of the bigger issues is becoming much more allergic to things that were never and issue with a normal ALC count as I started taking damage when it was steady at 10,000 and now has decided it wants to be 21,000 and progressing really slow

Currently the skin is giving me a break but it has been pretty bad and I was seeing the dermatologist Monthly or more often during the worst of the skin infections as every time my CLL goes into a period of escalating rapidly before stabilizing again something goes wrong and I have to add to the specialist collection

I just did a trial with Jakafi and it resolved numerous issues but ultimately the side effects became worse that the benefits So back to watching and many of the things it resolved remain good and I can always try it again as I can tolerate it for about 4 months

While you should always seek proper medical care after working with and endocrinologist, rheumatologist , Dermatologist ,The hospital for special surgery in New York City for joint issues and a bunch other specialists everything comes back normal except the blood counts elevated by CLL and my foot baffles the Chief of Staff at one of the best hospitals in the world

The right foot Plantar fasciitis requiring surgery after one year of every possible attempt to avoid it is extremely rare less than 1%

Today of course I went to bed normal and woke up with another Dental infection which than goodness is much more mild than some previous ones as my Dentist while not giving and exact diagnosis felt i had a significant underling health condition 1 year before any other Doctor

[WinJ3 in reply to Tommays56]

Very interesting Tommays56, I know of mild anemia, but I have never heard of mild CLL. Best wishes for you, especially with all the side effects of Jakafi.

[4Glory in reply to Tommays56]

The dental infection thing caught my eye here...I've intermittentally had swollen, inflammed gums on and off since a traumatic life event in 2011 (before my CLL dx in 2017)! The dentist was baffled at the time, prescribed antibiotics and special mouthwash. Anyway, I learned to live with it, but have been doing "coconut oil pulling" (where you swish coconut oil kinda like mouthwash) for about 8 months and my last dental visit was 2 thumbs up. She asked me what I was doing differently. Anyway, I just thought I'd mention it in case it helps somebody. 🌞

[4Jewels]

I have had a very fine bumpy, but colorless rash on my upper body that has spread out over the years, no itching!

[70s-80s-overlander]

What do your lab results say? Iron deficiency can cause itching ("pruritus" is the medical term, if you are trying to look up information on this). High bilirubin (a liver number) can cause itching. High uric acid (a kidney number) can cause itching. May we assume that your docs already have checked for these?

[WinJ3 in reply to 70s-80s-overlander]

My creatinine # is a little high, but all the other numbers are in range.

[Time17]

I have a constant rash on my legs and to a lesser degree on my arms that flares up and then goes down to small red lumps. It started when my I was put on chemo in January (FCR) and has continued even after the chemo stopped in early March. I was then put onto Venetoclax and Gayza but it has not gone away. When it is bad it is very itchy. When it was at its worst My Haematologist prescribed steroids to get it under control. I am now on a low dose of steroids daily and a steroid cream to manage it.

My Haematologist is aiming to reduce my steroid dose at a very slow rate. Previously when he just stopped the steroids, as the rash had reduced, it broke out again severely in a matter of days. He is not sure what is causing the rash but a low platelet count and a side effect of Venetoclax are the main possibilities.

So for me the steroids cream is very helpful in dealing with the itchiness from the rash. However I would not recommend being on steroids unless you really have to be.

I hope that you can work with your Haematologist to get it sorted

[WinJ3 in reply to Time17]

My rashes were going on before I started Gazyva and continued after therapy. I did wean of prednisone and now just taking doxepin and zyrtec for itching and steroid creams for rashes.

[Hindags in reply to Time17]

I've been on Pred for 2.5 years, for PMR, another forum on this website. Now as I'm tapering to 1mg very slowly, I've developed a bad itchy rash that is pressure sensitive. I'm wondering what strength steroid cream and what dosage Pred have controlled your itchy rashes.

[Time17 in reply to Hindags]

My steroid cream is Cortic-DS 1% Hydrocortisone Acetate 10m/g.

My daily Steroid dose was 25mg but that is now reduced to 5mg with my Haematologist wanting me to further reduce the dose. Still get the some red patches on my legs and hands that turn into red lumps but the cream seems to get them slowly under control. It just takes a lot longer without the high dose steroids. However I would rather just use the cream and put up with the lumps than go back to continually using high dose steroids.

[SSisson]

Itchiness and welts have been the worst symptom of my cll. I saw a dermatologist at Duke who specializes in CLL patients. For the past year, I have been taking a zyrtec each night and a singulair each morning. It keeps it at bay but I notice very quickly if I forget to take my zyrtec.

[Smakwater]

Mild and intermitten.

[Handley]

Hi - yes I have a rash on my back, and it does itch somewhat. I'm 5 weeks into Ibrutinib and start Venetoclax mid-July. Dr has given me something called Zerobase (emollient I think) to put on it to help maintain skin condition, but if it doesn't help I shall be off to see my consultant Dermotologist. Best wishes, Handley

[WinJ3 in reply to Handley]

Thank you and best wishes to you!