Blistering weepy itchy rash on both sides of neck - Orencia the culprit?

[Maggieorencia]

Hi all,

I’m new. And I’m despairing. I’ve been ill for 19 days. 18 of those also includes a horrible rash. Started on my left, a week later my right side erupted too. They look like hives and itch horribly. In my sleep I’ve been scratching. Wake up to a wet neck from fluid of the blister? Although it’s one continuous blister I guess. Been on orencia infusions for 18 mos. the illness and rash followed a Christmas party. I was afraid to go to because every time I socialize I catch an infection. Lethargic, dry cough, mucous cough, chills and this god awful rash that makes me want to perform my own surgery. Got into a emergency dermatology appt. for tomorrow. For now, has anyone else experienced these fluid filled hives? I don’t want to sound vain but thank god my hair covers the rash thing. It’s so awful. It is severely interfering with my sleep because it itches so badly. Anyone experience something similar? Worst Christmas and New Year. And yup, I’m feeling sorry for myself. My RA is actually under control and I am considered “low disease activity” as a result of orencia. CRP score is a 6. Hence the “almost cured” but won’t be if I stop my orencia. TIA. Gentle Hugs.

[Hidden]

That sounds nasty. I'm sorry, no advice, but glad you are seeing someone tomorrow. Let us know how you are.

I did have something similar that flared up after a drug I was taking (can't remember which). It started off as blisters then turned to crust. No one could tell me what it was.

Sorry to be useless.

[Maggieorencia in reply to Hidden]

It helps to know I’m not alone. Broken down for a total of 5 hrs of sleep snatched here and there no wonder I can’t fight this thing.

[Hidden in reply to Maggieorencia]

Oh poor you. Lack of sleep is awful. I hope the appointment shed some light on it. I suppose you talked to rheumatologist?

[Maggieorencia in reply to Hidden]

The appt is tomorrow but no I haven’t talked to my rheum yet. She’s not that helpful. It’s my nephrologist whose getting me in so quickly to all these other drs. Thank god for her!

[Hidden in reply to Maggieorencia]

Pleased to hear it. Blistering skin is never good.

[Gnarli]

Oooh but that sounds horrible, you poor sausage. There are two things I really struggle to cope with; nausea and itchy rashes so I really feel for you. I hope your appointment tomorrow gives you an answer and, better still, an effective treatment.

[Maggieorencia]

Thank you so much. I am in a panic. Interesting I was flu like before the onset of rash and still unwell. Thank you!

[AgedCrone]

I know you want it sorted yesterday.....but listen to what your Dermatologist advises, & tell him you think you have just had a flu like virus. The way you describe the fluid filled hives does sound like an allergic reaction....., but don't be surprised if the Dermatologist discounts the Orencia.

Let us all know what it turns out to be!

[Lina282]

Hi, I am on Methotrexate since January 2018 and I have blistering rash on both side of my neck and on my chest as well. They are worse after I take my MTX on Monday and they are a bit better at the end of the week....and I have it week by week. I have these blistering rash since about November so they didn't start straight away with my MTX at the beginning of last year.

My rheumy didn't listened to me when I wanted to show him so I think my only option is to go to my GP and change my rheumy as well. I just don't know how to do it.

Hope you will get some answers from the dermatologist.

Good luck and let us know the result please xx

[Maggieorencia in reply to Lina282]

I will. I’m sure there are good rheumys out there I just haven’t met many ppl who have one. Last night was awful. I can’t believe I finally fell asleep and woke in time to get over to my appt. still have 2 hrs to go. Will keep you informed xx

[Cup-cake7]

Outside thought is although I haven't RA I've had similar undiagnosed neck rash but it didn't blister as far as I could see. Funny place though, I even treated my hair for 'nits' !!!!!!! Not that!!!!! Was very itchy, ... My story is having under active thyroid and low metabolism no energy etc I then took adrenal support (I saw a neck rash on line somewhere which said it was adrenal fatigue?! But nothing to back it up).

I'd then seen eminent Dr Peatfield who diagnosed insufficient adrenals through with old time basic methods ( even though urine test said ok by the endo)

Since taking adrenal support my rash just went, I also had it on my trunk, very itchy,

good luck, just a Holistic thought if it's not a reaction to anything xxx

[Maggieorencia in reply to Cup-cake7]

I hope it’s an easy fix. Thank you!

[Cup-cake7]

P.s ....the body reacts in mysterious ways, psirosis eczema etc, either way when we are 'low' in ourselves all sorts of symptoms can show up, especially on the skin I've noticed, I've had vitamin panels done to also keep on top of things although expensive business

[Maggieorencia in reply to Cup-cake7]

I totally believe there is a mind body connection now. Lost my Mom a year ago, bern caring for my Father since who is not an easy man add 2 teenage daughters and 2 autoimmune diseases I am one easy leap from a total breakdown. Gosh I hope I’m kidding. Thank you again. I’m off to meet the wizard (I hope) now!

[Cup-cake7 in reply to Maggieorencia]

Wizard???

...easy to say but needto look after You, , Think vits, heal gut eat and drink well care for adrenals, there is light,

trust me, i was hobbling around on wing and a prayer for four years trying to care for mum and clients and fam - i didnt know what the matter was and was told to snap out of it 🙃 Take care xxx

[Cup-cake7 in reply to Cup-cake7]

....even now my anx flares too high its like heightened emotion

...My daughter was near tsnami and i kind of flipped but it passed then she was on target for cyclone so off i went again, what im saying is It Will Pass

Tc x

[Cup-cake7 in reply to Maggieorencia]

...mind body connection, absolutely!!

Iv done meditate today, 👍🏼

[Cup-cake7]

(Follow gut feeling if can )

[Maggieorencia]

Hi everyone. Had a couple of punch biopsies done today right now that great because I’m frozen and can’t feel my rash. Got a prescription steroid cream and they have no idea what it is either. Sure hope the biopsy teams do! xx

[Littlemunch]

I have blisters on hands and neck hairline. I take MTX which seems to be the cause as gets worse on higher dose. Consultants thinks its a skin virus and just got a course of antibiotics from Dr. Only time will tell. Please keep us updated on results

[Maggieorencia in reply to Littlemunch]

Will do. Won’t have the biopsy results for 2 weeks. I’ve been on topical cortico-steroid cream for 2 days and they are starting to disappear! They are also going to do a patch test on me. Still don’t know where the rash came from as I’ve not tried any new soaps, creams, shampoo washing detergent etc; maybe the biopsy will reveal all. Now I sit and wait but I have a neck that doesn’t itch anymore!!