posted
Has anyone seen of or heard of a rash like this:
My daughter had a strange rash on both her hands and wrists.
ABout a week after starting Topamax for NDPH diagnosis, she developed a red itchy rash on back of hands.
A couple of weeks later it became intensely painful and her hands were in a claw position.
The rash was very red, skin was rough, looked sore, sunburned (but she hadn't been outside) I could open her fingers, but it hurt her alot.
The rash was on both hands, only on the tops and just past her wrists. But it was sharply demarcated. It looked like she had red gloves on. The palms and sides of her hands looked normal.
She was seen in ER, doctors didn't think it was a skin infection, thought it was drug rash, stopped topamax.
About a week later, her hands were still painful. She was seen by dermatologist who said it was contact allergy, not a drug reaction, but this didn't make sense to us as the only change in what daughter was doing was the Topamax. She followed derm doc directions and used ice water /w oil soaks, prescription topical ointment (w/corticosteroids) and aquaphor.
Today the skin on top of her hands look better and she can move her hands. They are still a little sore. A top layer of skin peeled off over the past couple of days.
But the red rash part seems to have moved further past her wrists towards her arms. It looks like she's wearing a red bracelet. Her wrists look like the tops of her hands did back in December when the original rash started and they are very itchy.
Daughter tested positive for W1 and band 41 from LabCorp; band 41+, IND nonspecific bands from Stony Brook. Clogen results aren't back yet. I tried to get IGENEX run, but haven't been able to yet.
I took pictures, but didn't see a way to upload them here...?
Does anyone know what this might be?
We found an article about parvo virus and syndrome called "Gloves and Socks", but it didnt' say anyting about the rash moving and she didn't have any papules.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Was the rash stopping right at the sleeve line?
I am not a doctor, but 2 things that come to mind are both related to sunlight (or certain indoor lights) - some antibiotics and other meds can cause intense sun sensitivity and burning with red rash.
One I know about is Doxycycline, but I am sure there are others. For example with Doxy, you can get burned with full sunblock on and through car window glass in no time at all.
The other I just happened to learn about tonight via an episode of "House." I forget the actual medical term but it means light-sensitive porphyria. It is genetic, and can develop over time or come on suddenly with stress.
I would imagine illness and medicines could be stressors. They can test for this genetic condition if the docs think it's a possibility.
Just a couple of ideas, sorry I can't be of more help. Good luck to you and your daughter!
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I just reread your post and saw why she was on the Topamax. I hope you don't mind a slight off-topic post...
I am so sorry to hear she has NDPH. My husband suffered the same situation for 6 months several years ago.
He was poked and prodded and given every med imaginable, none of his tests were conclusive, and the docs were basically throwing their hands up.
His headache was the reason we began researching Lyme disease. Unfortunately at the time we were not Lyme-literate, and figured the CDC-negative western blot meant he didn't have it. He has never been diagnosed with Lyme or treated.
Fortunately, we got desperate and sought alternative treatments, since his meds weren't working.
Acupuncture got rid of his headache in about 10-12 visits. Obviously I can't say whether it might help your daughter, but I wanted to let you know it might be an option to look into.
I understand how scary those unrelenting headaches can be, and I wish you both the best.
posted
I got a rash just like this, which was very painful, even if a sheet, or a breeze, touched my hands.
Sunlight was definitely a factor.
Mine was biopsied and showed autoimmune activity, either lupus or dermatomyositis.
It is possible that the Topamax initiated an autoimmune reaction. In which case, the rash should improve, though not as quickly as if it was an allergy.
I would suggest an ANA test, a biopsy at a dermatologist's, and possibly seeing if eosinophils are high. I am not a doctor, this is just from experience.
If she has to go out in the sun, even now in the winter, have her wear sunscreen and cover up. I literally had towels on my hands going out to the car. Inside the car, the light through the glass is still a problem.
p.s. we had a lot of success with eliminating dairy and gluten for daily headaches; progesterone cream helped at one point (I forget how old your daughter is); very small doses of Topamax helped for a whole year, but starting very low and moving up very slowly..
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