Since November I have been suffering outbreaks of body rash the hospital has put it down as vasculitis caused from my 6th covid vaccine and I'm on steroids 6 a day and antihistamines currently as I had a bad outbreak again last week . Saw my consultant again this week for bloods etc and good news it's not my CLL all holding fine . Got another dermatology appointment in 3 weeks too . But out of the blue I have this morning received a appointment for a chest x-ray in 10 days time and I have no idea why,my consultant never said anything and no did dermatology,so what are they looking for? Could it be for the vasculitis or something else , any ideas? . On the plus side it's good they are looking and hopefully I can get rid of the outbreaks of body rashes etc .
Chest xray: Since November I have been suffering... - CLL Support
Chest xray
that's really weird. I'm getting the same thing. Body rash out of nowhere!! Woke up Monday morning with pea size rash under my arm (😳) and rash in other places. Took some allergy pills. Was freaking out. Immediately went to PA who saw me right away. He took tests but nothing seems to have shown up. I had it for three days then decided to stop dairy. Rash stopped but returned in the morning. I made the BIG mistake of taking Amoxicillin because I felt it was bacterial. OMG rash came out with a vengeance !!! Now I've got appt with allergist next wee for testing. Rheumatologist just diagnosed me with Lupus (!!) even tho I showed very slightly positive on ONE test and totally negative in all the others and even lab stated they didn't think it was lupus!! Yet my Epstein Barr Virus came out at 600!!!! Normal high is 11. I mean, really? Lupus and not EBV? I had mono when I was 15. I read it can stay dormant forever until it is triggered. I also have more EBV symptoms than lupus. He wants to put me on heavy duty Plaquenil for lupus but that also affects bone marrow! I checked with hematologist and they said there were no contraindications, but I don't know....started steroids yesterday and woke up with another rash this morning. Maybe, like Covid, there was something released in the air that some people are more sensitive to. It's driving me crazy it's so itchy and my body feels tingly or burning sensation under the skin as well that's how I know the rash is coming out - just curious, what state do you live in?
Signed
Conspiracy Kerry
Well until you experience these kind of rashes you don't realise how much they effect your everyday life o really feel for those who have suffered most of there lives with conditions like this . As you say your mind races and you look for answers, the only answer they are giving me is vasculitis probably from my covid jab but I really don't know all I know is I want it to stop . I'm finding this far more stressful then my CLL ..And I'm in the UK
I hear you, I had ibrutinib skin and GI problems. IDK how the UK system works, but is it possible to suspend your BTK to see if you have possibly developed an "off target" effect? Whether or not a particular vaccine or other event triggered the start, perhaps if you can get it to *stop* a bit, and get your skin back to normal, you can try a restart. I got diagnosed with "eczematous lesions" but after stopping the drug, the eczema cleared up and it hasn't come back yet. This was mmm 2017? And who knows, maybe you could turn out to be one of the "lucky folk" here who have reported needing to stop their treatment for various reasons, but did not need to re-start.
Well they don't think it is ibrutinib but you could be right and it might take a few guesses. They have told me to stop aciclovir as that can cause skin issues and seem to be sticking with there vasculitis prognosis as I say I'm not sure and will have to go through the process to hopefully find solutions
oh, my doc at that time told me my skin and GI problems weren't due to the BTK also. It's true acyclovir can cause skin problems, especially if you were out in the sun without a sunscreen. Considering that rash is considered "uncommon" with acyclovir and "common" with BTK inhibitors, I don't understand why docs keep pushing back on this. With these reported skin side effects incidence hovering around 30%, it is so frustrating to hear doc after doc say "it's not the BTK, it's another drug where skin problems are a *rare* side effect"!
link.springer.com/article/1...
It's great you went years without some triggering event to where skin rash started. But now that it has, considering how the BTK's affect skin molecules, it seems reasonable to temporarily hold the drug (perhaps both, if they are so worried the acyclovir is the culprit, assuming your neuts are OK) ,let the skin inflammatory cycle get stamped out, then see if your bloodwork is holding steady or if you need to restart the BTK.
Just because one didn't get side effects from a drug, or that the side effects usually show up early instead of late, doesn't mean it can't be an aggravating factor. You got a vaccine that seemed to stimulate your immune system so much a rash developed; it seems reasonable at this point to hold ANYTHING that might be contributing to the inflammation. Since the standard "anti inflammation" treatments aren't working well, and this has dragged on. I would want to stop anything and everything that could possibly be contributing to inflammatory processes, including my foods. Make sure your diet is not inflammatory, stay away from sugar, fried stuff, chemicals, etc. for at least a while. Remove all potential sources of inflammation.
Thanks and I would admit my diet is not great , sugars you name it but I'm slim with a high metabolism blood pressure fine etc so food drinks is one area I treat myself but probably worth considering
It's not so much the weight, as if serum ferritin, myeloperoxidase, triglycerides, or other inflammatory markers or heart/sugar parameters are normal. You can be very skinny and still have totally off the chart inflammation going on internally, and have metabolic syndrome risk factors like high triglycerides and low HDL. Food can often contribute to this inflammation.
I'll give a recent example from my personal experience. I don't eat much junky candy, except around Halloween. We would get extra, so as to snack on ourselves. I happened to have done my yearly bloodwork and intensive cardiovascular lab testing right after Halloween last year, instead of in September. My triglycerides and various other lipid parameters plus my HbA1C and myeloperoxidase were skewing the wrong direction , and the only thing I could think of, was I had been eating Hershey and Heath Bars and whatnot (the small trick or treat ones) daily the previous 3 weeks. So we will not be purchasing any candy, period, moving forward. (The non candy stuff is more popular too, I offer a choice, and the kids are wanting the toys and stickers more so than candy). I get repeat bloodwork soon to verify it was indeed the candy, because other than that there were no other obvious reasons for these labs to change that drastically. Thyroid is normal, no alcohol, etc etc. just, Halloween candy daily for a few weeks! And my triglycerides went from 76 the previous year to 203, with a 20% drop in HDL!
I feel the same way. Steroids doing nothing but screwed up my knee and upper thigh today. Can barely walk. Rash gone for now but took a long time. Sanitized my sheets. Washed all pjs. See what happens. Could still be my well water which we've always had problems with. The water is soft. Then turns hard. Both situations bad. Either I'm oily or dried out 😳
I feel that way too - about being more stressed with lupus than with CLL.
I have hives and rashes at the same time. I'm on steroids and they're not helping so I take 2 chlortrimeton allergy pills and they seems to do the trick. Whereas I thought the rash was over it's not. Every day I have to wait til the day the water is between soft and hard to shower. Rheuma told me to use anti fungal powder (or cornstarch powder) on the "folds" of my skin, which are many. That's where sweat accumulates the most, and especially in the armpits. For me anyway.
have you seen an allergist ?
Suspected sarcoidosis comes to mind. It can present in the skin but also in the lungs. However more often than not skin problems are caused by food allergies. Us being allergic to something changes with age, health and treatment status etc. Do you consume nuts? I get rashes after I do so I don't consume them anymore. Perhaps it would be good to do a food allergies test. There is one that checks allergies to a few dozen if not hundred foods.
I am not on any medication’s at this time other than my normal Statin. I keep having bumps pop up all over my body and my face like an inflamed mosquito bite. Last night I woke up in the middle of the night with my arm, very hot and bumps all over it some on my face and some on my other hand. I have no idea what it is. It is extremely itchy and irritating.
Sounds like you really need to see a doctor possibly allergy reaction maybe
Ibrutinib concerns
Appointment today.....
Change in my CLL. Faster doubling time
After the up comes the down
Chest fullness / Chest discomfort
