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Scleroderma & Raynaud's UK (SRUK)

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hypersensitivity reactions (blocked nose, burning, or itching skin, ea) before lupus sjorgen and scleroderma

Leonie1 profile image

Dear all with Lupus, sjorgen syndrome and scleroderma,

I have a question I hope you can all help me with.

Have you had symptoms like a blocked nose, very itchy or burning skin, red flushes in the face, asthma, burning eyes (with tearing) before you developed lupus, sjorgen or scleroderma?

As a young child before puberty?

After puberty?

Or in adulthood?

And are there people who had mastocytosis as a child?

It would help to get as many answers as possible for us to see if there is a link. Based on that we decide to do a official research towards the subject.

Best regards Leonie

17 Replies

Hi. Yea I was diagnose 23 years ago but for years before I had a red flushed face, very itchy skin all over too. Hope this helps.

Leonie1 profile image
Leonie1 in reply to Joan59

Thank you so much for your response. Where there any other symptoms you had before what you experienced? Can be anything, like getting carsick really quickly and extreme, responses to food's? Allergic kind of responses? Having a lot of tear fluid when laughing. Anything what stood out. The itching did it get worse after showering? Did you have a good fitness compared with others the same level trained, or did you get out of air earlier? Thank you in advance. I hope others will answer too. Best regards Leonie

Joan59 profile image
Joan59 in reply to Leonie1

Hi my itching did get worse when I got out of the shower too. Raynards came first so very cold extremities. My level of fitness wasn’t too bad I had taken up scuba diving two years prior to diagnosis but just before the raynards hit I had to give it up because I just couldn’t use my hands in the water so it became unsafe. Best wishes

Joan

I was diagnosed with scleroderma 17 years ago. Five years before that I had severe itching all over my body. The GP tested liver function which was normal so couldn't do anything about it. It lasted for several years but was never linked to the scleroderma which was diagnosed after Raynauds. I also had patches of pigmented skin on my back and neck. I got it soon after the first flu jab I ever had, and assumed it was an allergy. I still have itchiness which is better with lots of moisturiser and body lotion. It's usually worse after showering.

Leonie1 profile image
Leonie1 in reply to KatieAnna

Thank you for your comment. how old were you when you got your diagnoses? greetings Leonie

KatieAnna profile image
KatieAnna in reply to Leonie1

About 50

I certainly started with some of those - dry eyes, blocked nose (frequent sinusitis and always snuffly if breathing through the nose), itchy skin - especially the back, and red face flushes - a few years before official diagnosis - hard to say if it was before I actually had LLsc? Also same symptoms named as menopause ones, so might be that as well?

Leonie1 profile image
Leonie1 in reply to LadyTrundle

the hormone balance and disruption certainly has something to do with it. I am all linked to mast cell activity. I am trying to unravel the cascade of events. to find out when exactly it starts. I had a lot of itching before my puberty, extremely carsick, ulcers in my mouth, inflamed gums, now suddenly hay fever and all kinds of complaints. I have a lot of ups and downs myself, so that also means that I do things that improve it. so now i'm trying to figure it out.

I was diagnosed 15 years ago with Scleroderma but prior to that I was on anti histamines for years due to urticaria.

Leonie1 profile image
Leonie1 in reply to Fishie1

How old where you when you got diagnosed? Dit you have raynaud as well? Did you have it long before?

Fishie1 profile image
Fishie1 in reply to Leonie1

I was mid forties when diagnosed. Raynauds and reflux were first symptoms. I'm lucky as Sclero is mild and stable. I can't remember how long before I had urticaria but probably 3 or 4 years. I was on anti histamines for far too long before they were stopped.

I had eczema and alopecia when young and allergies galore to random things - not always identified. I had to use ointment and eye drops on off pre puberty, took steroids and often had IM shots through my childbearing years. I have had a lot of allergies to medications, and procedures since diagnosed with Sjögren’s and Scleroderma.

I used to get terribly car sick from infancy right up until teens. I stopped getting eczema and alopecia once diagnosed and treated for hypothyroid and once menopause underway. Hormones seem to have been biggest factor for me.

Leonie1 profile image
Leonie1 in reply to OldTed60

The hormones and mast cells and neurones etc all influence each other. I hope to figure out the cascade of it all.

OldTed60 profile image
OldTed60 in reply to Leonie1

Interesting. Is this for yourself or for a research project?

Leonie1 profile image
Leonie1 in reply to OldTed60

Both. From my own experience a number of things have come to my attention. I have thoroughly immersed myself in the material, especially because of the limited knowledge and possibilities in medical care. (diagnosis and treatment are protocol-bound.) I am trying to confirm a number of connections. I'm going to start an official investigation with surveys, anamnesis, patient input. but first want to check a number of things and where response from fellow patients. I could of course be wrong too. but I do indeed receive positive feedback about certain symptoms before the disease symptoms develop further. I'm going to set up a foundation and start an official investigation. great project, hopefully it gives result. together we know more than what our treating doctors can uncover. I hope to be able to unravel the cascade of symptoms.

I was diagnosed with Rheumatoid Athritis at 21 and was poorly for morel than 10 years. It suddenly disappeared. At 61 in 2014 in suddenly couldn’t get out of bed, everything stopped working, I was admitted to hospital for 8 weeks to find out I had Myositis with a scleroderma overlap. I was on cyclophosphamide drips while in hospital. Dreadful experience, machines not working half the time. I was bedridden at home for a ear but got my legs working with physio and exercises.In 2015 I was given mycophenolate mofetil (Cellcept), what a magic drug!

M body started to improve, I now walk with a stick, I can’t walk far but at least I can do a few things. I have itching, get tested regularly for lungs, heart and other major organs. I’m lucky cos I have a consultant who knows about scleroderma which makes a big difference. Got to remain positive.

HiI'm 72 and was diagnosed with Sjogrens and PBC 3yrs ago.

Before that I'd started with Raynaurds.

I was very car sick as a child and started with lots of allergies in my 20s and had a course of injections which stopped the allergies. They stopped this treatment soon after as several people suffered heart attacks afterwards.

I am sea sick and used to be air sick

Never had red face but very dry skin and different types of rashes.

For many years I had a very bad cold 3 times a year that affected my eyes badly.

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