Posts - Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Scleroderma & Raynaud's UK (SRUK)

11,113 members•5,638 posts

All posts for May 2023

Anyone with diagnosed dysautonomia as well as scleroderma?

Dysautonomisa seems to be recognised in North America as common in scleroderma, but not in UK. My symptoms of dizziness and breathlessness with low blood...

Dysautonomisa seems to be recognised in North America as common in scleroderma, ...

•2 years ago

ANA Titre 1:80 with Raynauds and burning hands

Hi, looking for some help and advice from others... Male - Age 39 - slim - mostly fit and well - non smoker I have this year began to experience episodes of...

Hi, looking for some help and advice from others... Male - Age 39 - slim - most...

•2 years ago

Can anyone recommend a private scleroderma specialist in South West pls?

Hi all. I recently developed raynaulds disease which I knew at age 48 was not the ‘normal’ presentation of this issue. On too of that I suddenly experienced...

Hi all. I recently developed raynaulds disease which I knew at age 48 was not th...

•2 years ago

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Really painful trapped wind/colic?

Hi all,I have frequently been getting what l assume to be trapped wind: it hurts in both sides of my ribcage, in my back (ribcage) and top of stomach/diaphram....

Hi all,I have frequently been getting what l assume to be trapped wind: it hurts...

•2 years ago

infusion of steroid and mycophenolate

hi I was recently diagnosed with localised scleroderma, was prescribed Tacrolimus ointment which didn’t prove successful. Rheumatologist has now said as...

hi I was recently diagnosed with localised scleroderma, was prescribed Tacrolimu...

•2 years ago

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New drug - possibly for Raynaud's?

I have Raynaud's (and hypothyroid and 70 years old). I heat/cold sensitive. Any thoughts on how this drug might be beneficial or not? fezolinetant

I have Raynaud's (and hypothyroid and 70 years old). I heat/cold sensitive. An...

•2 years ago

systemic sclerosis

Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes...

Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's ...

•2 years ago

Swallowing issues

Hi all, I have being having swallowing issues, for quite a while now. I've got to the point where i can't swallow solid food. I'm waiting for a endoscopy to...

Hi all, I have being having swallowing issues, for quite a while now. I've got t...

•2 years ago

Mattress recommendation for calcinosis relief

Hi all, I need a new mattress and while I don't have bundles to spend, I do want to make it last! I have extensive calcinosis, mostly on pressure points of...

Hi all, I need a new mattress and while I don't have bundles to spend, I do wan...

•2 years ago

Mycophenolate

Hi there I have limited scleroderma and I have been asked if I want to go on a trial study for Mycophenolate. Just wondering if anyone is on this drug and the...

Hi there I have limited scleroderma and I have been asked if I want to go on a ...

•2 years ago

Reducing Nifedipine dose for the warmer months?

I am on 20mg x 2 daily Nifedipine for secondary Raynauds, I started in the Autumn last year. I know I need to consult my Rheumatologist about this but...

I am on 20mg x 2 daily Nifedipine for secondary Raynauds, I started in the Autum...

•2 years ago

Newly Diagnosed Diffuse Systemic Sclerosis will I be able to go back to work?

Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing...

Hi all, my symptoms started in November 22 and have rapidly progressed. I strug...

•2 years ago

Nifedipine side effects/fluoxetine

Hi everyone, after 3 weeks on Nifedipine my GP has stopped it due to side effects migraines, light-headedness and gastro issues(stomach pain,increased...

Hi everyone, after 3 weeks on Nifedipine my GP has stopped it due to side effect...

•2 years ago

Scleroderma and fatigue

I am struggling increasingly with extreme fatigue which I imagine is down to scleroderma. I try to limit myself to one outing/activity a day but even that's...

I am struggling increasingly with extreme fatigue which I imagine is down to scl...

•2 years ago

Reynauds or another medical issue?

Hi! I was diagnosed with Reynauds back in 2021 in the summer and at the time was under a paediatric consultant as I was not 18 yet. My symptoms started awhile...

Hi! I was diagnosed with Reynauds back in 2021 in the summer and at the time was...

•2 years ago

Quick question

Dear all Just wondered if anyone has splinter haemorrhages and if so did you see anyone about them or mention them to either rheumatologist or dermatologist?...

Dear all Just wondered if anyone has splinter haemorrhages and if so did you se...

•2 years ago

Coleocystitis xSystemic sclerosis

so yesterday I had yet another gmail bladder attack the pain was horrendous I had a temp I was tacky cardiac and sats low bp high my raynaulds was really bad...

so yesterday I had yet another gmail bladder attack the pain was horrendous I ha...

•2 years ago

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feeling the cold

For quite a while now I have had serious intolerance to the cold which is now interfering with certain activities or at least making me nervous about doing...

For quite a while now I have had serious intolerance to the cold which is now in...

•2 years ago

Candida with Cellcept

I am being treated for primary ethromelalgia, Sjogrens, and Scleroderma. Has anyone had oral thrush associated with taking Cellcept? I have been on Cellcept...

I am being treated for primary ethromelalgia, Sjogrens, and Scleroderma. Has an...

•2 years ago