I get the most intense itch...its embarrassing. My upper arms itch so bad they feel like bugs are on them, bitting me...no bugs....i cant figure it out...its not dry skin,not too much sun. Its not anything that im eating different...there are little bumps, but not hives. Another person may not see them,but i do, and one can feel them...just upper arms...usually one arm at a time. I had been diagnosed with SLE, for the past 30+ years,now im told, no lupus, i may have APLS(?) and been thru hell..., this itching is really bad...one doc. said its dry skin, or reation to laundry soap,another said nerves,another thinks im nuts.(Lol) the only ‘ semi’relief’ that I found is ice...directly on arm, so i can fall asleep. Have tried lots of medication, lotions etc...not helping..any one ever hear of something like this? This picture of it when it first starts itching...my skin pigmentation is changing in spots...
Intense itching upper arms,mostly nights - CLL Support
Intense itching upper arms,mostly nights
Do you have a CLL diagnosis? CLL can have skin involvement but its fairly rare. What does your dermatologist say...? Perhaps you need some advance testing of allergies?
I hope you get some answers soon, chronic conditions are very draining, as many here can attest to...
~chris
I have intense itching at night, also little bumps. I try not to scratch, because it just gets worse. I try to get up and put on a calamine type lotion which calms it down but often I wake up having been dreaming that I was putting on the lotion, when actually I was scratching! I also have good relief from oatmeal gel which I collect when I make my oatmeal (I never use salt or milk, just oats and water, slightly more water makes better gel, low heat). How much gel I can get varies, sometimes I can collect enough to put in the fridge to use for the night. If I have some, then I use that instead of the calamine, it works better I think.
I was at 2 dermatologists who both said it could not be related to CLL. One of them just concluded "chronic pruritis", after eliminating other possibilities. For me that is not very helpful because it is not specific. I read that itching can be related to lymphomas, and CLL is in that category.
Here is something:
healthline.com/health/lymph...
Hi there. Suffered with the symptoms you describe for 20 years - and still do. After the first 10 years and God-knows-how-many doctors and diagnoses, one doctor, and one diagnosis, seemed to make sense: I have c-spine spurs and damage that are pressing on nerves and sending the wrong damned signals to my brain. Nothing to do with skin or diet or psychological issues or parasites or allergies or anything else. I've been on EVERYTHING, including gabapentin cream and anti-depressants and all they did was make me fat and STILL not sleeping. But I found two things that work, without any internal drugs, and I SLEEP, so I thought I'd share it with you:
1 - ice on the itchy sites. When I'm having an "episode", which can last a few nights or a few weeks or a month or two, --and usually they occur when I'm particularly stressed, so holidays are a bear-- I sleep with one or more standard screw-top ice bags right on the itchy area. I keep two in my freezer drawer, each in a plastic grocery bag or they'll stick to everything around them because they're half-melted when I put them away in the morning. Grocery bags stop THAT problem. I just remove one (sometimes both) from the bag and place it on the arm or shoulder or side of my neck that's driving me nuts that night. After a few nights you'll find yourself not even waking up and managing to keep the ice bag placed correctly because you're COMFORTABLY SLEEPING with it there.
2 - If your state allows it, medical marijuana topical cream, which I apply not to the itchy site du jour (it doesn't help), but TO MY NECK, all around my C-spine, where the nerve compression occurs.
No (internal) drugs, no itching, and I sleep. I hope this works for you. Been working for me for about 6 years, and I am delighted. Good luck!
Get a qualified doc to have a look. Make sure not scabies. Remember the "itch - scratch - itch" cycle...
Could be drug related. Recommend a full generalist assessment.
What's your primary diagnosis? CLL?
Best wishes, itching is a dreadful symptom.
I too have the upper arm itch every night! Usually L) arm but recently both arms!
Tried lotions & antihistamines!!! My specialist did not think it was related to CLL! I am going to get allergy tested to find out. The only relief is ice packs & going outside in the cold with nothing on the left arm!
I will try to find out!
Shez
I lucked out. Have CLL taking ibrutiniv and my forearms looked like Shrek. Itching? The worst. Dr took me off meds for three days put me on Benadryl then back on meds and itch went away.
Hoping you find a solution
Mike
I have the same thing!!!! With the same little bumps
Hi Torid,
If you follow this link
healthunlocked.com/search/s...
you can browse the 89 times that posts or replies included "skin and itch"
Our archives has 405 replies that mention skin issues and CLL:
healthunlocked.com/search/s...
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".
My own experience is that skin rashes and irritation started a year before I was diagnosed in 2008, and any time I got treatment for my CLL, it got worse. But Ibrutinib/Imbruvica really ramped it up to painful levels.
I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping your treat your itchy areas will be part of that care.
Len
Len -
Many thanks for this detailed post.
1)Other than immunoglobulins- is there any test - obscure or routine - which would be informative and monitor the skin issues?
2)The dry vaccine SHINGRIX is NOT being recommended by my *team* until the research study on immune compromised patients is complete. (6 plus months). I stay on a 1 gm daily suppressive dose of Valtrex. Any other suggestions?
The skin issues do not present as *run of the mill*, textbook ,google like, shingles. (But, of course) I am reluctant to biopsy viral lesions. They have responded to high dose Valtrex for 7-10 days. (1 gm tid)
*T cell dyscrasia* was the Dx you mentioned & was your medical team’s *Dx* on the name of your issue. What was the treatment?
Thanks to you and everyone for sharing any thoughts on this issue.
-Diana.
IMO the "T-Cell Dyscrasia" diagnosis is like a "gastro intestinal virus"- It's doctor speak for "we accept you have symptoms but we have no idea of the cause, so let's hope your immune system can cope with it"
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.
I summer I skip the daily moisturizer until I have some stinging sensations in the evening and then I restart the moisturizer for several days.
After having oily skin and acne for most of my adult life, it was hard for me to accept that moisturizer was the answer, but it works for me.
Len
Thanks for posting this detailed reply...
I was always convinced that CLL was linked to skin problems - like yourself, mine started a year or maybe two before diagnosis (itching on the shins, mainly, in cold weather)... after starting BR treatment, I had a lot worse - a very itchy rash (the consultant almost stopped the treatment, but I told him I could bear it, just...). So, that worked well for the CLL, but a month after the 'all clear' I got a carcinoma on my nose...
5 years down the line from that, I'm fine - still in remission, no return of the squamous cell carcinoma - the itching has died down a lot, but is still there in the background, especially when it gets cold. I take Piriton when it's bad, but usually just a cream (E45)... sounds as if Torid has tried these, and so far with no luck.
I hope he finds a solution soon... it's not pleasant, is it?
Strange itching has just started, but only on my back. I have been on Ibrutinib for over a year. Prophylactic dose of Aciclovir seems to be at same time as the itching started. Hospital suggested taking Piriton, to no effect. So GP has given me a steroid cream, jury out on that . Also turned the shower temperature down.
It always seems to be some minor niggle !
Colette 🤔
Yes, Colette (one of my daughters is also a Colette, BTW!)... I do think that CLLers are prone to certain 'connected' ailments, and skin problems certainly seem to be among them, as lankisterguy's post seems to prove conclusively...
It doesn't seem to always matter what treatment has been followed - itching is a common problem. I do hope that you either find a solution, or that the itching recedes in intensity with time, as it did in my case.
All the best!
I am named after the Saint, and not the risqué writer !
Thanks yes keeping my fingers crossed 🤞 that mine will subside quickly.
Regards
Colette x
Ha! Well, our daughter is named after the magnificent writer... you should try 'My mother's house', and 'Sido' - probably slightly fictionalised versions of her early life - beautifully written, but beware - some translations are much better than others.
Thanks will gives those a try,
I only read a couple of short stories as a teenager, thinking that I should read my namesake.
Colette 📖
The early novels were written at the behest of her sleazy husband Willy - who also took credit for authorship! Fortunately, Colette was tough enough to split from this guy and (although even those early efforts have their positive points) went on to live an independent and productive life - if hardly a conventional one.
I too have had that problem, don't panic, over time it will ease up in frequency.
I have had this on my feet and groin. Strong steroid creams help. Keeping the area cool as well.
I had high IGE. With Imbruvica plus Venetoclax the IGE went down from 1300 to 88. It is suppose to be around 100.
Be well,
Hoffy
Had over 35 years of an annoying, painful, stabbing, itching only on upper arm area. Sometimes towards elbow and it would shift from right arm to left and sometimes simultaneously. Only happened at nite. Would tire me out...scratching, rubbing all nite. Would mysteriously disappear for months then show up again. Not related to CLL for me since I was dx many years later. Went thru allergists, neurologists, doctor after doctor and no one knew what it was. Never had a pattern. It wasn't like every time I got nervous, it would pop up. Heat used to help, antihistamines used to help, anti itch cream used to help, ice sometimes helped...but each time I found relief, the remedy would stop working. My sister experienced it 3 times in her life only. It would attack her when tired, stressed and too much caffeine. Friend of mine that has MS experiences it few times a year.
I finally went to acupuncture. Homeopathy and acupuncture finally got rid of it for now. Been over a year or two since last attack.
I hope you're able to get to the bottom of it.
Hi GMa27, your post resonated with me, I’ve never read of anyone else having the itching shift from arm to arm, for me it would alternate one night of misery on the left upper arm and the next night the right upper arm.
Went to multiple Dr’s and they said they never heard of it.
I was scared and it wore on me terribly.
Did anyone ever explain why it would alternate? I hope all is well with you now, MiMiLove
Oh wow! No one has ever had what I experienced! A neurologist said I had a general term which I can't remember. It was too general and not what I had but she at least validated that she recognized I had something. She x-rayed my neck and said I was fine. But that she had patients that had similar symptoms and surgery got rid of the itchy/pain.
Acupuncture helped me. Been gone for 2 years. Did pop up 2 weeks ago. But gone after 2 nites. I freaked...cuz I need a break after chemo. In remission and just wanted peace!
I don't think I will ever know what it is.
💕
Did you figure out anything I have very similar symptoms off and on for years. The itch is so intense I pour rubbing alcohol on it the itch is so bad it literally burns
This is exactly what’s happening to me. I am in the process of illumination, to find the causes. My skin feels inflamed when I itch and looks exactly like your pic. I’m goin to check my kidney and liver functions also.
I am allergic to the heat and break out and itch on my arms. Dermalmd serum is great. It sooths and heals When my arms itch this serum helps take that itch away. Smells great, It IS NOT sticky.
I also have intense itching in my upper arms. They itch so bad that I could gouge the skin off. It feels like horrible bugs crawling. I have tried everything. Dermatolist gave me steroid cream a few years ago. It didn't help. I have tried a million things. I was even given an anti fungal cream which did nothing. I read on one of these sites to try Capsacin (OTC) it burns like fire.
I GOT RELIEF FROM ORAJEL (TOOTH ACHE/TEETHING GEL OR CREAM.
I have had Non Hodgkin's Lymphoma (remission)
I never knew anyone in the world had the same symptoms besides me! I was in the supermarket tonight and my left upper arm started with the most intense itching ever, A few quick paines went along with it that felt like someone was stabbing me with a pin to the point that it would make me jump in the surprise when it happened. No amount of scratching helped. I also got those little bumps. This happens to me about once every two or three years. I have no cancer that I know of. Seems remarkable that there’s enough of us out there that have this very specific problem, yet it sounds like it’s still baffling all of our doctors. We should continue to share and check up on each other. I love the Orogel idea for numbing the itch.
WenWib,
If you have “no Cancer that you know of” may I ask why you’re hanging out with us?
Jeff
Wenwib has only just joined, Jeff, and was looking for help. I think they are on the wrong site by mistake, but may have found this particular thread helpful. Maybe there is another HU group more relevant to them?
Wenwib, I hope you find an answer to your itching. I know what a horrible thing it can be, whatever the cause.
Best wishes,
Paula
Hi WenWib,
-
As the other replies indicate, you may want to check one or more of the 200 other communities here on Health Unlocked.
-
For example: healthunlocked.com/my-skin
-
or a general search on any terms like: healthunlocked.com/search/c...
-
This group CLLSA is for people diagnosed with a blood cancer called Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma and our skin problems are usually an indirect side effect of our cancer, so most suggestions made will assume you share our cancer, which probably will not be helpful.
-
Thanks for stopping by, but we suggest you "unfollow" us and follow a more appropriate group.
-
Len
Yes I have the exact same problem any info would be life changing. Thanks
My arms look exactly the same and I can see the bumps on your picture. It’s anywhere from my fingers to my shoulder blades, chest, neck area. It will start feeling hot to the touch like a bad sunburn. Next comes the crawling yet intense itch. It’s mostly at night but also happens throughout the day. If something brushes against my skin just right it will turn the itch to On. I’ve tried everything!! The only thing that seems to work is Benadryl and ice packs on the area until it gets so cold I can’t take it. The relief is typically short lived.... maybe 30 min to an hour at the most. It’s affecting my sleep horribly!! I feel like I haven’t slept in weeks!
This is exactly what is happening to me. Did you find out what it was. I have treated for scabies and everything. It’s not helping. My doctor prescribed me Claritin it not working. Help if you found out anything. Thanks
Hi there. Suffered with the symptoms you describe for 20 years - and still do. After the first 10 years and God-knows-how-many doctors and diagnoses, one doctor, and one diagnosis, seemed to make sense: I have c-spine spurs and damage that are pressing on nerves and sending the wrong damned signals to my brain. Nothing to do with skin or diet or psychological issues or parasites or allergies or anything else. I've been on EVERYTHING, including gabapentin cream and anti-depressants and all they did was make me fat and STILL not sleeping. But I found two things that work, without any internal drugs, and I SLEEP, so I thought I'd share it with you:
1 - ice on the itchy sites. When I'm having an "episode", which can last a few nights or a few weeks or a month or two, --and usually they occur when I'm particularly stressed, so holidays are a bear-- I sleep with one or more standard screw-top ice bags right on the itchy area. I keep two in my freezer drawer, each in a plastic grocery bag or they'll stick to everything around them because they're half-melted when I put them away in the morning. Grocery bags stop THAT problem. I just remove one (sometimes both) from the bag and place it on the arm or shoulder or side of my neck that's driving me nuts that night. After a few nights you'll find yourself not even waking up and managing to keep the ice bag placed correctly because you're COMFORTABLY SLEEPING with it there.
2 - If your state allows it, medical marijuana topical cream, which I apply not to the itchy site du jour (it doesn't help), but TO MY NECK, all around my C-spine, where the nerve compression occurs.
No (internal) drugs, no itching, and I sleep. I hope this works for you. Been working for me for about 6 years, and I am delighted. Good luck!
This is the first time I have heard of anyone having exactly what I have and been going through. I have seen my dr several times a dermatologist several times. Been on creams and antibiotics and more creams and gels and antihistamines. Been told it’s nerves on and on. This is worse in the summer for me. Benadryl works a little but mainly because it knocks me out! An ice cub right on my skin that melts in less than a min. I have scabs and now scars from all the scratching. My skin on my left arm looks horrible. Now the itching it going to my shoulders! No one has been able to come up with anything!!! But to know others have this also was just a huge relief that I know I am not nuts!! I get bumps but you can’t really see them. This is awful!!
Hi BMary, I get the intense itching too and read online that it can be related to nerve damage. I have been taking Gabapentin for years for a pinched nerve in my pelvis area, but cut back on it for a while. Then the itching started and it took a while before I found the article online. I ramped my Gabapentin back up and make sure to take one before bed and that seemed to help. It got so bad that I would jump out of bed and put cream on my skin in the middle of the night. Now I only get the itching if I forget to take my Gabapentin.
Chris
Me too,
Several visits to Dermatologist and tried so many different things, but none work. No bumps just an itchy back.
Chris and I have had several conversations about this. I can’t believe the pinched nerve issues, but what do I know. I was thinking of trying to get allergy testing.
At home so off to take my bra off because that adds to the irritation.
Colette
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