need advice- refractory to most meds
hi! hoping for people's advice on my symptoms
7 months ago i had onset of intermittent full-body itching without any rash shortly after getting my covid and flu shots (which i've always tolerated fine previously). It is mostly on the back of my thighs and butt cheeks but can be anywhere on the body. Worst late at night and when I wake up in the morning. Sometimes it feels like a usual itch, other times more like a stabbing burning feeling. When it happens it is intense and very hard to sleep or think of anything else.
I tried being treated for scabies without any improvement. Tried all the antihistamines (fexofenadine, loratidine, cetirizine, hydroxyzine, famotidine). I had labs checked and all normal (liver, kidneys, blood counts, HIV/hepatitis/syphilis, multiple myeloma). Got a chest x ray to check for lymphoma and normal.
Then saw a dermatologist and tried dupixent for several months (no change). Saw an allergist and added xolair (helped for a week then stopped working). Got a biopsy or normal rash-less skin showing spongiotic dermatitis but no other findings. Was referred to a sub-specialist dermatologist and tried nemlivio (completely eliminated my symptoms for one week then stopped working). Tried higher dose nemluvio and got multiple different types of rashes, which were biopsied last week and pending results. I got severe contact dermatitis from the bandaid at the biopsy site which has never happened before and my dermatologist said is a sign my skin is very inflamed
I'm now 3 days into cibinqo and as symptomatic as ever. This has completely destroyed my life and we still don't know what's going on. Not sure if this is an atypical form of eczema? My immune system being over-stimulated by something in the vaccine? Some neurologic thing? I'm also getting a scan to look for cancer elsewhere next week. If the cibinqo doesn't work the plan is to try prednisone and switch to rituximab long term if it helps.
Does anyone have any ideas or similar story, especially after vaccines? I'm a doctor myself and very pro-vaccine, just suffering immensely and looking for any ideas or hope. thank you!
Posted May 4, 2025, 4:43 PM UTC