Itchy skin rashes

[Ronnn7]

I’ve been having a horrible time with extreme itchy skin rash on my both ankles areas. I’ve been trying using anti itchy creams / lotions etc.. but none of them works. I’m seriously going through the madness day & night. Would be great if anyone has any recommendations on this problem thx

[cllady01 Former Volunteer]

Ronnn, do you have CLL? While some have reactions to treatment for CLL that are in the form of rashes and some have rashes that can be CLL but not from treatment, it is not something we can help with if CLL is not involved. Have you tried other sites--there are several skin-related sites on HU.

If you have CLL, please share a bit about yourself for us to be able to help with possible suggestions, one of which is to check with your CLL Dr.

[LovecuresCLL]

Bug bites versus allergic contact dermatitis versus shingles (usually not bilateral but can be in CLL) versus fungus versus lichen planus. A good dermatologist should be able to help you.

[AdrianUK]

It’s important to look for causes here. Veinous drainage can cause itching also of course there is the issue of shingles to consider (usually that one is not on both sides at once).

But if you are like me and they itching is essentially a form of urticaria wirh hives (raised bumps which happens wirh me if untreated) or dermatographia (where red lines are left from gentle scratching) the. The only way I’ve found to help wirh this is to take high dose fexofenadine under medics Supervision. Defining something worth talking about tho I’m looking for the next step as it’s not completely controlling it.

[Hidden]

Hi Ronnn7

My itchy skin problems seem to be related to Ibrutinib and coming off it. Do you know or have a sense why you have this problem?

I didn't find external creams effective. For itching, Prednison helped, but regularly taken, for me, led to water retention so ask for doctor's advice. A course at the skin clinic, a referral from a dermatologist, reduced and contained the problem, but did not solve it. Recent AVIG transfusions seems to have supported my body improving the skin from the inside.

I have always had dry skin and this has been made worse by the CLL treatment. Sometimes my wife rubs a good almond oil into my skin. This is helpful for the skin in general but does not make much difference to the itching.

Good luck and best wishes,

Peter

[chillsome]

Hi, I had the same after starting treatment and it was put down to a reaction to the Allopurinal (anti uric acid build-up drug). They took me off it and the rashes and itching (which were on soles of feet, feet, ankles and upper legs) went away. They put me on an alternative drug and I have had no recurrence several months on. Not sure if you are on Allopurinal but thought it worth mentioning in case.

[cll2013]

I have had CLL for 7 years, been on ibrutinib for 3, and off of it with no treatment for 10 months. Afib started while using Ib. Now I have an internal heart monitor.

I say this as a prelude to telling you I have suddenly developed a major, severe itch, redness, swelling of hands. It patch tested for an allergen used in many common products - - shampoo, conditioner, liquid soaps, cosmetics, lotions (especially Eucerin for me), detergents, cleaning agents. Steroids finally help clear most of it. One week after stopping the oral steroid, a break out has occurred on both arms and my back. This chemical has a long name, but if you Google "mi and mci" you can read about it. Very upsetting. By the way, it started with the ankle itching.

Caladryl helped with the itch. My dermatologist gave Rx for a corisone which is now helping.

[cll2013]

By the way, the chemical I refer to in my reply (above this one) is banned in the EU, Canada, Australia, New Zealand - - but not in the US. 10-15% of our population have developed an allergy to the mi/mci additive. Glad it is not in food.

[JigFettler Volunteer]

Hi Ronnn, & Welcome.

It would be helpful to know what your CLL, health and treatment status is, as cllady01 has already suggested.

Further - if you have other medical conditions or indeed on any medication already.

Are you in part of the world where its winter? Have you been sitting with your legs close to a heat source. Are you scratching? - The itch - scratch - itch cycle can be a problem. Is there infection? Do you have thin or swollen ankles - AdrianUK has already mention venous issues.

I assume you have a friendly family Dr with who you may consult.

Perhaps you feel you can share some more information.

Best wishes

Jig

[Marchmouse]

Ampilytropin a CCB blocker pill for high blood pressure can cause this. It did for me so I changed to Losartan which seemed to work. My present problem is both feet that go bright red and crack above 18 deg C then recover when temp drops. Possibly contact dermititis. Does not appear to be fungus. It is driving me mad too as GP and podiatrist seem non-plussed. I have CLL but at a fairly early stage I think.

[Italianpainter]

Ask your dr to order Clobetasol. It is a prescription anti inflammatory/ steroid ointment. And use ice. You can get gel packs that you can keep in the freezer. Secure them with large rubber bands or just wrap a towel around them while elevating your lower legs. I used ice extensively and it would give me relief that would last hours after use

[210savannah]

I also had a very itchy rash on my back. I tried several over the counter meds. Finally went to the dermatologist and he prescribed Clobetasol Within a few days the rash was disappearing. Within 2 weeks it was completely gone. Maybe a trip to your dermatologist is warranted.

[ishudderz]

I’ve had CLL for 8 years (estimated) and it seems the day I was experiencing symptoms of CLL that led to my diagnosis (swollen lymph nodes) was the same day my itching hell began. It seems for me this rash was one of the new symptoms that popped up and resulted in me seeking answers and finding out I had CLL at 35 years old. Today, I still am untreated for the CLL. Still watching. I’ve been to several dermatologists, family MD, allergist (who said I’m allergic to NOTHING after doing several exams) etc. etc. it’s been so unbearable at times I think I’m going bonkers. To this day I get hives on my feet and ankles, halfway up my calf, behind knees, on elbows, on my scalp (along with loss of much hair) and in my midsection. It’s horrible. I’ve tried all kinds of ointments,cortizone, hydroxozine, certaline,etc etc. none of it worked. Of course prednisone is a great option when it’s gets so bad I can’t take it any more but I feel prednisone is a bad option after I was on 80mg daily for a year for a kidney disease I have and the long term side effects of so much prednisone were so negative that I avoid taking it now whenever possible.

So I actually did find a good way to knock it down and make the rash retreat for a period of time long enough to actually feel relief and appreciation for having peace in my life for the moment.

I was prescribed Clobetasol which didn’t do much until I learned that it does work, but only when I do a wet dressing application - overnight. It’s a process. But it’s a God-send. I THINK I once read somewhere that some Drs at National Jewish here in my hometown (Denver CO) discovered this solution.

Note the link below gives details but doesn’t really mention putting the ointment on your rash directly after your bath and prior to putting the wet dressing on the rash. That was a crucial detail in my opinion.

nationaleczema.org/eczema/t...

I Seriously hope anyone plagued with this problem will find this post and try this. I’m sure glad I finally did!!

Good luck!

[ninaherb]

I've had very itchy skin rashes on different parts of my legs and body for a few years. The doctor gave me some Elocon ointment. It works within minutes.

[Mango1957]

Hi Ronnn.

I have had an intermittent rash that began 8+ years ago. I have seen my primary care physician, an allergist (no significant reactions noted with skin testing), and 3 dermatologists, one of whom told me it was a "pseudo-rash", not a real rash, and was caused by sun exposure. At the time I saw him, the rash was on my abdomen, and being a woman in my 50's at the time, I assured him that my abdomen had not seen the light of day in at least 15 years. 😳

I've been tested for celiac disease (3 negative skin biopsies), and went gluten-free on the recommendation of my primary, to rule out possible gluten 'sensitivity', as opposed to a true allergy. During the gluten-free trial period, the rash got worse, and it was decided that gluten was not the issue.

The initial rash lasted a few months, appearing first on the left side of my chest, then spread to the right side, my abdomen, ankle, knees, and elbows. The itch was unrelenting, and so intense that I cried. I would awaken with blood on my pajamas from scratching at night. I tried cool showers, oatmeal baths, calamine lotion, caladryl lotion, topical Benadryl, prescription antihistamines, and oral Benadryl at night just so I could get some sleep. I have a drawer full of OTC and prescription creams and ointments (one of which was priced at over $300; thankfully the doctor gave me a coupon so my cost was only $15. It did n-o-t-h-I-n-g). None of them worked at all.

Out of sheer desperation, my husband slathered me with Therapeutic Mineral Ice, then covered the worst areas with soft thin cotton handkerchiefs. I smelled to high heaven, but I slept that night. I even went to work like that.

Therapeutic Mineral Ice was the only thing that worked at all, and I used this home remedy until a friend suggested I see her acupuncturist. I went for the first time about 2 1/2 years ago, and the rash, which had made an intense reappearance, went away within 2 weeks. I don't understand much about Chinese Medicine, but I gleaned that the rash was attributed to an inflammatory response. I also have Hashimoto's, which is an autoimmune disease. I had questioned my Endocrinologist about a Hashimoto's/rash connection, and he said he did not know of one. However, there does seem to be some relationship between CLL and autoimmune disorders and/or inflammatory processes.

I have had two minor rashes appear in the last 2 1/2 years. Each time, I went for a tune-up with the acupuncturist, and the rash was gone within a couple of days. I told the dermatologist, and he was like, "Okayyyyyy, if you say so...". He all but rolled his eyes at me. Whatever.

For what it's worth, I was diagnosed with CLL just over one year ago. I am on W&W, and am essentially asymptomatic. As mentioned above, I do think the rash is somehow connected to CLL/Inflammatory processes, but I haven't the scientific background to explain how.

Just my $.02. At the very least, I wanted to suggest the Therapeutic Mineral Ice. And by the way, get the name brand. The store brand didn't work!

Best!