Calling for Help: Has anyone gotten this vasculitis in their skin and been Rai stage 1 pretreated CLL. Anyone tried plasmapharesis or been put on steroids like prednisone for this.
Has anyone gotten kidney disease on account of cryoglobulins thanks to CLL.
Please advise any thoughts or help appreciated.
-John at LoveCuresCLL
John,
This is really worrying you isn't it? Have you now had cryogloblobulins tested for and confirmed?
Jackie
Cryos 100% confirmed on serology , you show me how to upload a picture of my legs. I will scare you palpable purpura. I have vasculitis from the cryoglobulins. It’s bad. I am on prednisone 40 mg. Saw my derm today who did a skin biopsy for histology and immunofluorescence . My wife called lab we will have confirm. My wife crying. I ate good tonight. It’s bad . Most people go to the hospital with this . Called several doctors. My derm was pretty calm and just prescribed the steroids. He didn’t say you better go to the hospital .
OK, it's good to have a confirmed diagnosis. The cryoglobs are just a different type of monoclonal protein but, as you have found out, they present with specific clinical challenges and can be serious.
Steroids is the right initial treatment to dampen down the production of the protein but Rituximab may be used. If it can't be controlled by these then systemic CLL treatment may be needed. I don't need to tell you how important it is to keep very warm, please turn the heating right up until this is under control.
Here is a paper about treatment of cryoglobulins but not CLL specific but does have some helpful information. bloodjournal.org/content/bl...
This is a very rare complication and I hope you have a good CLL specialist who will work with your dermatologist to get this under control quickly.
Please let us know how you are and best wishes for getting it sorted
Jackie
You are GREAT Jackie for this info. It is rare....but that’s why we are so worried. Day 45 of CLL diagnosis. It is hard for me and especially my wife. We just got a specialist and are sorting things out and then my legs look like shrapnel hit them over night. Thanks again. I hope it stays away for awhile.
I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008.
-
Each of the 4 times I was treated for my CLL it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.
- I also have lots of seborrheic keratosis that seem to wax and wane along with the red dots and rashes. Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.
-
The common result from expert pathologists that ran flow cytometry on the biopsy, 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 it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) 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 its cousins, but attributed it to T-cell Dyscrasia.
ncbi.nlm.nih.gov/pubmed/176...
_____________________________________________________
Our archives has 500 replies that mention skin issues and CLL:
healthunlocked.com/cllsuppo...
-
The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:
ncbi.nlm.nih.gov/pubmed/174...
SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".
I have a severe vasculitis a palpable purpura all over the fronts and backs of my legs . The cryoglobulins did this. I am on oral prednisone 40mg . My derm took biopsies but I already know what it is. If I could show photos on this website I would pretty much scare everybody . It’s itchy and not painful at all. It just looks really scary.
dermnetnz.org/topics/urtica...
Worse than the photos in that link.
You folks are helpful reading your articles they are too general but this is a specific entity as a direct result of the cryoglobulins in my blood. They are precipitating in the blood and causing a vasculitis . A palpable purpura. There are even a couple of lesions on my arms and face. There is an urticarial nature to vasculitis too. I am seeing another CLL consult on Monday in Houston. Once the skin biopsy results come back Monday to confirm my derm’s impression . I will give them to MDA. Already my wife talked to nurse there and she talked to hematologist very responsive to my call. I am calm but it’s scary. I have very bad skin manifestations of this disease and the vasculitis is just the worst thing yet. I thinks this justifies treatment in-spite of my low Rai stage of 1. I hope I can make the flight. Just wish me luck and hopefully the prednisone will work. I don’t have hepatitis C . Already been tested and negative ....this is due to CLL. CLL sucks .....
Hi! Self post: RESOLVING vasculitis on legs from cryoglobulins. I woke up this morning and my wife looked at my legs and said “it resolving”. Still looks awful but definitely fading. I didn’t even want to look. Prednisone 40 mg worked . Thank you to my derm doctor who saw me for free. And his wife who listened to my wife. Thank you Jackie and Lankisterguy (brave) who answered my calls for help. Steffie said sorry to 😭 so much but it looked so worrisome. My kidneys still working. Staying hydrated. Most people spend a night in the hospital but I refused to go. Disease throwing us curve balls....only Day 45 for us. Maybe they will treat me on account of these cryoglobulins and the vasculitis. Will let you know. Bless you all. And thank you.
-John
You're not out of the woods yet John but we are here with you.
You're learning way too fast about this illness and what can happen because of your own situation 
but from the way you talk, I have the feeling you will cope, come through this and perhaps, help others.
Jackie
PS Good news on the kidneys, I was worried about them. Keep up the fluids 
Biopsy was LCV =LEUKOCYTOCLASTIC vasculitis . Immunofluorescence was negative. So it was the antibodies screwing with my tiny vessels in my legs. It’s almost gone with steroids. Now how to get rid of the steroids
There’s a chance are the cryoglobs will come back as you taper the steroids so treatment will probably be the answer because this is such a serious issue and threat to your wellbeing.
Jackie
LovecuresCLL,
I see that you were diagnosed 4/26/19 and are 11q, ATM, zap70, unmutated, CD38 positive previously had shingles.
You noted pre-treatment. If you are willing, please bring us up to speed on your treatment history and future considerations.
I see this as very concerning and hope you can answers.
JM
No treatment yet. I went to MDA and they want to give Ventoclax and one of the CD20 drugs in a combo. I have had CLL officially since 45 days ago roughly. I am same profile as you exactly except I have an equivocal CD38. My WBC is around 30K . I am in my 60’s . Some big nodes none bigger that 4 cm. But my skin is a nightmare . Shingles cellulitis vasculitis. .. bug bites . Edema PRURITIC purpura . You name it.
My mistake in reading the post, I thought you meant that you were pretreated, and was thinking that you may be experiencing a delayed regressive response related to the drug.
I am unmutated with dim expression CD20 and CD38, no trisomy12, 13q, 17p, or 11q. Although zap70 is related to CD38, I tested negative for p53 and no test for zap70. I suppose that the p53 status might be interpreted as not likely zap70.
I had a highly favorable initial response to obinutuzumab. I concluded that it was because gazyva aka obinutuzumab is a CD20 active MA.
I do not understand why your CD38 is not not confirmed. I would think that a zap70 would require a CD38 expression.
I will message you with the 20 questions follow up, and see if you want to continue there.
JM
Excellent points you know your lab stuff well Smakwater .....you should change your name to Smoke water. Like that eighties hard rock song Smoke on the Water....Fire in the Sky. You are smoking SMART.
MSK is sequencing my somatic cell line with nail clippings . Is that going to be definitive then? I don’t know. All these centers, arguably some of the best in the world, are repeating tests . But flow has been done twice. It’s an 11q for sure probably unmutated. I bet MDA and MSK results are the best. Cannot wait to see them. It’s V plus O because of the rash. I have to move into the hotel. I wanted IB but it’s just not in the cards. They start treatment at MDA next month as soon as I get off from work. I don’t want to lose my job. I like to stay busy.
You guys /gals are my buddies for life as long as my lasts. I plan to give you details and tell you the latest innovative stuff. And I hope my bad skin doesn’t mean i will have problems with treatment . Is there any correlation between those who have it easy before and those who have it easy during treatment?. I am pretty stoic although my wife is emotional 😭. But the side effects I hope won’t be worse than the disease so far. It’s bad for me. If you think I am a goner and I need to retire and rewrite my will ....let me know. Don’t sugar coat it.
I am only familiar with the easy up front terms, and I have a floating moderate IQ.
Smakwater comes from my kennel name Smakwater and Sprezzatura.
As far as the somatic sequencing, your ahead of me on that curve. It is said to be one of the up and coming detection techniques. The last time I read up on it only a few specialty research labs could do it, It was not yet perfected, and it was expensive. However in theory, it should be definitive. FISH/Flow should provide accurate prognostics. Are they using peripheral blood or BNB/Aspirate?
I understand what you are saying about work and staying busy. It is always at the front of my considerations too. It helps to replace the anxiety that one gets when they are idle.
About the weighing of Ibrutinib vs Venetoclax. In my view only If you exclude the initial TLS scare, It appears to me that overall patients experience less yet more tolerable side affects in addition to higher success rates across all measures.
My experience with the O+V has so far been shamefully easy, and extraordinarily successful up to now. So much that I am apprehensive to speak of it and Jinx myself, or mislead someone who is not a match. I also have to suppress the eagerness to encourage others to treat early because It pains me to read about those who experience the poor quality of life from CLL.
Glad that we are all buddies and able to both share and support each other. I started to have skin issues prior to treatment, and again another shame story it has gone too.
Last October I actually was to the point that I thought check out time was coming early as well. I was having trouble with pain and mobility, skin, nodes, gastrointestinal problems, sever fatigue, and the list keeps going... I entered the trial in October and by January I rode a bike 200 miles.
Share any encouraging information that you come by with your wife. It can be just as hard, even harder for them at times as you mentioned, and Do Not entertain the goner card. Go after what you believe is your best shot!
Take some encouragement from Newdawns last post also (see link below). She is having success with the venetoclax also.
healthunlocked.com/cllsuppo...
For this is what the high and exalted One says—
he who lives forever, whose name is holy:
“I live in a high and holy place,
but also with the one who is contrite and lowly in spirit,
to revive the spirit of the lowly
and to revive the heart of the contrite.
Have a peaceful evening,
JM
CLL and Osteomyelitis 
Is anyone using essential oils to help with the treatment of CLL? 
Information please! Best CLL doctors in Los Angeles vicinity?
I need help understand CLL 
