Burning skin sensation : I’m on W and W and... - CLL Support

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Burning skin sensation

Gardengirl44 profile image
14 Replies

I’m on W and W and tonight I am feeling a burning sensation on right hip and lower back right side . I can’t say it’s an ache... more a burning. My lymph nodes that are swollen are mostly in groin area - at first I thought I bumped myself somewhere but alas it connected! Another symptom that now I’m aware of???

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Gardengirl44 profile image
Gardengirl44
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14 Replies
81ue profile image
81ue

The only thing I can speculate is shingles? mayoclinic.org/diseases-con... in which case, you should see your doctor ASAP for early treatment to make it go away. Pain and burning is one of the first symptoms of shingles.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to81ue

Good suggestion, particularly given the burning sensation is limited to one side of the body, as it is rare for shingles to present on both sides of the body mid-line.

Gardengirl,

The need for urgent attention is right. If you are indeed experiencing the onset of shingles, for which we are at higher risk with our compromised immune systems, then promptly starting an antiviral, e.g. Famvir( famciclovir) or Valtrex (valacyclovir) is the best way to reduce the seriousness and length of shingles. Insist on being seen by your doctor as soon as possible.

Neil

Gardengirl44 profile image
Gardengirl44 in reply toAussieNeil

tx. I didn't think of that. I will get that checked out.

Gardengirl44 profile image
Gardengirl44 in reply toAussieNeil

I got an antiviral and will hold it for a day... and see how I felt by morning. The meds can effect wbc- but what’s the worst of the 2 evils😬. Pharmacist definately is pro shingrix vaccine —

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toGardengirl44

If you have shingles, then a possible increase in your lymphocyte count is way down the list of concerns, although you are right it could be a CLL driver: clltopics.org/Viral_Drivers... - but remember, the virus has been resident in your body since you had chicken pox!

Shingles can leave you with permanent neuropathy - constant pain where you had the blistering. Shingles can also cause permanent eye damage: en.wikipedia.org/wiki/Shing...

The older Zostavax vaccine is not recommended with CLL as it is an attenuated live vaccine. Shingrix, if you can get it, is more effective than Zostavax and non-live. Some CLL specialists prefer long term use of an antiviral in those of us susceptible to shingles, but only because of the lack of specific experience of Shingrix in CLL patients. A reasonable number of our members have had a Shingrix vaccination, but as with all vaccinations, it takes a few weeks to become effective.

Neil

Justasheet1 profile image
Justasheet1 in reply toAussieNeil

Neil,

I had both Shingrix shots pre treatment with ibrutinib and the doc at MDA still put me on and continues having me take Valacyclovir daily as a prophylactic.

His reply to me when I informed him of my vaccinations was, “but how do we know that it worked?”

The Moderna shot comes to mind now with me. That’s why they are the experts. 🩺

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toJustasheet1

Exactly!

Gardengirl44 profile image
Gardengirl44 in reply to81ue

Thx !! I went to doc and have a script in case the burning remains

neurodervish profile image
neurodervish

Diabetic neuropathy is another possibility worth checking, if you're diabetic.

Gardengirl44 profile image
Gardengirl44 in reply toneurodervish

no, i am good here. tx

Teagle47 profile image
Teagle47

Shingles can happen and not present with a rash. It happens about 25% of the time. I have had shingles 4 times and twice it was with no rash. The posts that urge EARLY intervention are absolutely correct. It is much easier to control with early intervention. My understanding (and not a medical opinion) is that anti virals like acyclovir and valcyclovir, even when taken in high doses necessary to control an active case of shingles, has very little downside, but a great deal of upside. I have been on daily acyclovir for over 10 years with no ill effects.

Terry

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toTeagle47

18 months ago I thought I had rashless shingles on my trigeminal nerve. I understood it was quite fairly rare, perhaps more like 2.5% or less.

Bubnojay profile image
Bubnojay

If you wait for a rash that will be too late to control it tabs need to be taken urgently to head the shingles off. Better safe than sorry.

Big_Dee profile image
Big_Dee

Hello Gardengirl44

Could be a lot of things, even sciatic nerve pain, see doctor. Blessings.

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