Lost hearing, vertigo and now rash is this?

[Redfleur]

I hope someone can help me. I was diagnosed with MCAS in 2015 at Guys and St Thomas then discharged when the drugs started to work. I’ve been in and out of hospital for chronic IC and unexplained gallbladder inflammation which was extremely painful on numerous occasions. Every time I go in I end up reaction to the medications and now have Anaphylaxis’s to Ibuprofen and to avoid Anti inflammatories. A bout of Covid in succession, which threw my bloods out and ended up in hospital with extremely high potassium. I’ve had sudden hearing loss since my 1st AstraZeneca which never recovered. I now wear hearing aids, but my ears hurt and I have terrible tinnitus. I’ve developed vertigo and a skin rash for the last 3 months, which went away with Steroid cream but now back again. I’m waiting for ENT appointment, but my GP has booked a double appointment next week because of the skin involvement.

Do I ask to go back to Guys. Do I ask about Mastocytosis. Or do I let the GP keep prescribing Steroid cream and ramp up my histamines. She said there was wiggle room to add 1 more Loratadine, which made my heat sink frankly.

I’d really appreciate some advice on the rash. I could load more but I’m getting rashed flattened lumps which look like nettle rash. Back of knees, thighs and hips.

Many Thanks

[Mastomum]

I Redfleur, you definitely need to go back to the Mast cell specialist. These are all connected. Something is triggering them. I have no diagnosis but have so many triggers. The scariest reactions being heart involvement. Mine is managed by restricted diet which involves avoiding high histamine foods, perfumes, laundry liquid, sunlight, exertion. Stress and illness also impact. Recent flu vac is affecting me at mo. I take beta blockers cetrizine ketotifen and Benedryl. Been waiting 2 years for referel to immunology who dismissed me after tryptase test results said normal. I am hoping to see a skin specialist as suspect I may have cutaneous mastocytosis. Think it a miracle you got a diagnosis. Go back them and get proper guidance. All best Amanda

[Redfleur in reply to Mastomum]

Hi

Thank you s much for replying. Just needed that confirmation and confidence before the GP appointment. Luckily I had a rash on my hip. The GP is contacting Guy’s for help but I won’t hold my breath.

Many Thanks

[Topnumpty]

I have similar rashes and hearing problem. My diagnosis CM /UP was 10 years ago. Been passed around all departments, several consultants have retired in the meantime. Immunologist has been seeing me annually , just measures tryptase and despite it being in 30s for last few years just says it is ok.

Recent referral to dermatologist, seems to be more positive, though I am now waiting for haematology appointment.

The hearing loss came on suddenly following reaction to general anaesthetic, ten years ago. Audiology now want me to be seen in ENT for investigation for acoustic neuroma. The wait has been almost two years.

Rashes I manage with steroid cream for flare up, which are rare now I have med regime of Montelukast and Fexofenidine. These also seem to have reduced the other symptoms like flushing, and wheezing, though I do get bone pain.

Redfleur, you certainly should be referred back to the Mastocytosis department you were with before. Did they give you the option to contact them directly? If not ask GP for urgent referral.

[Redfleur in reply to Topnumpty]

Thank you for replying. I just needed that extra confirmation and confidence for my appointment. Luckily I had a new rash on my hip. The GP is getting in contact with Guys for help. I won’t hold my breath though.

[Redfleur]

Update

I have been referred for a brain scan.