I'm posting just for input from our group on a simple issue.
I started Brukinsa on January 1, and I'm also on IVIG infusions once every four weeks since October 1. Last week from January 15 through January 20 I was in Boston for a two week blood and check up post the Jan 1 start on Brukinsa for three nights; followed by, three nights in Manhattan (NYC) Temps were freezing level, and each city had snow flurries on one of the three days in each one.
I noticed during that trip that my left hand has lots of little reddish spots, sort of like little punctures, my skin looks dry, and i easily ripped a small amount of skin on one area near my pinkie when I scratched it very lightly due to a minor itch. This week it seems a little better, the small wounds I've gotten (the scratch i mentioned and a few I don't remember how i got them) are taking very long to fully heal, and the skin is still appearing much dryer and a little rougher to the touch than my right hand. My right hand in fact doesn't have much to talk about.
My question to those who have been on Brukinsa, or any of the other BTK inhibitors, is if this is likely from the new medication I started. Is it any thing to be concerned about? I haven't mentioned it to my Specialist in Boston, because I don't want to cause any reason for her to consider lowering the dose or amount of times I take the medication, but on the other hand I don't want to be stupid. It seems relatively harmless to me, and I'm thrilled with the incredible drop in my WBC. My test before starting had 135000 WBC, again I had my first dose on Jan 1, and on January 16 in Boston it was down to 16,500. I have another visit and blood on Jan 30 with my local Hematologist/Oncologist I see locally here in Florida, and I'm really anxious to see what the numbers are then. The only disappointment i had with the Jan 16 readings were my Hemoglobin which was down to 11.7, and it was 12.5 on the test just before I started the medication. My Platelets were also down on Jan 16, and I thought the huge drop in WBC would start to raise the HGB and Platelets, but I'm new to being on treatment.
Carl
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wizzard166
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I meant to mention that my mention of the cold weather and snow flurries, was because I'm wondering if the red spots and drying skin might be due to that. The think is that my right hand is fine, and only the left hand has these red spots and really dry somewhat flaking skin.
I started Brukinsa May 2023 and am also receiving ivig every 4 weeks. I also have had many skin problems including dry flaky skin especially on my arms as well as red patches and bruises all over. I also had really bad heartburn which is now better but still a problem. I early on was taken off the drug for an endoscopy and then put back on with the addition on Nexium. My wbc has been slowly going down but not as quickly as yours. As time goes on I have had fewer red patches and bruises. I also found a remedy for my scaly skin. I use Amlactin Intensive Healing cream all over except for my face once daily. It took a couple of weeks, but now my skin is very smooth. Most of the red patches also healed. I think you will find in time your skin problems will get better.
Thanks Bethsaida. Your input calms me down. I haven't messaged my Specialist about it, because I am thrilled with the early blood work and huge drop in WBC. I was concerned if I messaged my Specialist that it could cause her to think about lowering my dose. If this is going to get better, but at least not get worse, I want to stay on course with my medication.
My next blood work and visit is tomorrow. Anxious to see if the drop continues, and also to see if my HGB inches up a bit or goes down further. Will also be looking at the Platelet levels, because both HGB and Platelets were down just after starting the Brukinsa on Jan 1. I've also been noticing I get a little colder more easily with our home air conditioning, but that might have been a temporary thing.
You are also on IVIG, so I'm curious too about another skin thing. I started IVIG October 1 and go every four weeks. My Brukinsa didn't start until January 1. Prior to Brukinsa i only had a small red spot where the infusion went in, and that didn't expand at all over the next week. My last infusion on last Friday now has about an eighth of an inch purple area around the area the needle went in. I guess that is the bruising that we talk about, and it too isn't a big concern.
This site is so amazing. Hello there Bethsaida, I started full dose of Zanubrutinib in April 2023 & 13 days in I developed chest pain. It started after 60min on my Upright Stationary Bike. It started as a dull constant pain but later turned into FIRE 🔥. I was literally rubbing my heart & wished I could of internally relieved that burning. I had 3 ER Visits the first 3 months so I would definitely urge anyone to take it easy while your body is adjusting to this very strong medication. I had to reduce to just 80mg daily for 3 months until my heart & lungs healed.
I am on 1/2 dose now & suffer all the common side effects; Platelets dropping, WBCs dropping (desired results), more immunocompromised & increased bone/joint pain. After 3 weeks my Platelets leveled back up.
What’s interesting is that in my Endoscopy Colonoscopy exam, the colon was good but Endoscopy found Esophagitis & Gastritis. I wasn’t prescribed anything but I stopped my daily Lemon Water 🍋. I knew that mid chest pressure/pain/burning was associated with that initial chestpain side effect incident with full dose Zanubrutinib.
Its an amazing drug Wizard166 but not without side effects & we are all different but tread gently & reducing dose is not the worst case scenario. And yes my skin is dry as a bone so I invested in some more therapeutic skin moisturizers too. I am now stable at 1/2 dose, 80mg twice daily. My doctor doesn’t want to increase until March but with this new vision issue, I probably won’t increase.
My CLL Specialist is at RWJBH & she said that reducing dose should not increase resistance & that her main concern is that I take the medication. She said we could try to increase & if not well tolerated we could go back. She also said no to switching to O&V, that we will ride this out & would consider non covalent BTKI Therapy if & when needed. I am not vaccinated nor will I do IVIG, so that explains her position.
5 days into full dose of Zanubrutinib resulted in a large hematoma & I had bloodwork done that showed an increase in WBCs & Platelets & a drop in Hgb; Hgb 10.8->10, WBCs 81->118 & Plts 76->108. Now Hgb 12.5 (my highest), WBCs 9.8 (my lowest) & Plts 103 (105 was in W&W for 10yrs). Good luck & GODSPEED 🙏🏾
I just had another visit with my local Specialist and also blood work. I'm doing fine other than the red irregularly shaped areas that last night were burning. Today their lighter and not burning.
The blood work today continued the drop in WBC now to 8600 and the HGB is back up to 12.7. Only the Platelets are a possible issue with them dropping again, in each reading since starting Zanu on January 1, to 108. They were 176 in December 2023, 158 on January 9, and now 108 today. In between those I was in Boston on January 16, and the Platelets there were 114. So Platelets have steadily dropped since I started Zanu on January 1, even though the WBC has now dropped from 135000 just before Jan 1 to 8600 today.
She just said for now that we will stick with the cBTKI Therapy until it is no longer effective & she mentioned following this therapy with non covalent BTKI Therapy in the future.
I guess I am not a good candidate because I have a low tolerance to drugs & suffer with all the side effects. I also have horrible veins. Plus I would be labeled non compliant because I don’t want any vaccines or IVIG. I live alone, stay masked & no grandchildren.
Also I asked about my type of CLL & she said that I have no abnormal mutations but no IGVH mutation either so I still may only need minimal intervention. I will ask more in March since I doubt I’ll go up from 1/2 dose🤷🏽♀️
I have been on ivig for a while. I started it about a year before Brukinsa. I have had many injection bruises , some quite large and ugly, especially when starting ivig. For me it depends on the skill of the nurse who inserts the needle. I now warn them that I have delicate veins and they are more careful. I have less bruising but still have red marks and some bruising.
The little red dots are (without seeing pictures) something called petechiae. They were a feature of the Acalabrutinib while I was on it and have now returned since I started Zanubrutinib in December.
I as far as I understand the red dots are bust capillaries just below the surface of the skin and can last for a while. I have them all over my body but not so you would notice without being very up-close, Above the right eye this is slightly bigger patch about 1/8" long. With the Acalabrutinib I had a patch about an inch square on my shoulder but it was never a problem.
I too am on IVIG and have been for three years now but I've never had any side effects from this.
Thank you for the input. It is those small red areas you described, and the fact yours have never advanced internally into a problem is comforting to know. I haven't brought it up with my Specialist who prescribed the Zanubrutinib, because I'm so thrilled with the WBC decline and I'm pretty sure the decline in lymph node numbers and size too, that I don't want to influence a decision to decrease dose right now. I have another blood work today and meeting with my local Specialist, and the red blotches are all over the top of my right forearm, so I guess I'll show and mention it to her. Even if she suggested possibly decreasing dose now, I'll wait and then bring it up with my Specialist I consider the decision maker in Boston. Maybe the local one I'll see today will dismiss any concern anyway.
My logic suggests the spots which started on my upper left hand, and now on my right forearm, are from two small wounds that preceded incident by about one week. I scratched an area on my left hand lightly a couple weeks ago, and it took off skin that bled. That took a bunch of time to begin to heal fully, and a week later all the red spots appeared. Now another week later they are mostly gone. Then last Friday (five days ago) I had my every four week IVIG, and that left a quarter inch area that is still dark and purplish around it. Then last night I felt burning on my right forearm and saw all the red areas and spots there. It must be a reaction all around any area that you get punctured or have a break in the skin.
My only real concern, assuming I'm right, is if it can get dangerous internally.
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