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

Scleroderma & Raynaud's UK (SRUK)

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HRCT chest BSR 2024 guidelines

The new BSR guidelines published last year states that all newly diagnosed SSc patients should have a baseline HRCT chest examination. For those of us who were...

The new BSR guidelines published last year states that all newly diagnosed SSc p...

lynntregaron

•2 days ago

6 Replies

treating melasma / hyperpigmentation on face from SSC?

hello everyone, does anyone have any tips or experience treating hyperpigmentation or melasma like patches on the face? My SSc seems to be quite active over...

hello everyone, does anyone have any tips or experience treating hyperpigmentati...

Nw6London

•2 days ago

2 Replies

Fractured bones, slow healing

Morning everyone, Just wondering if anyone else with systemic sclerosis, has found that they are slow to heal ? I broke my tibia and fibula 5 and a half...

Morning everyone, Just wondering if anyone else with systemic sclerosis, has fo...

Buttsy

•4 days ago

6 Replies

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Strong pain in neck, jaw, losing sleep often; any thoughts?

My wife of 67 has SSD with Raynaud's and ILD. For the last few months she's been pretty stable, especially since the vasodilation medication began. However,...

My wife of 67 has SSD with Raynaud's and ILD. For the last few months she's bee...

Pomoc

•5 days ago

3 Replies

Reynauds

I have been diagnosed years ago with Raynaud's I've had the drip treatment but it never did much I'm now on sildenafil which has made my hands better but my...

I have been diagnosed years ago with Raynaud's I've had the drip treatment but i...

Djcharlie

•6 days ago

6 Replies

Nifedipine

hello anyone been prescribed Nifedipine for raynaud’s and noticed their heart rate spike? Since taking it I’ve noticed my heart pounding and the feeling of...

hello anyone been prescribed Nifedipine for raynaud’s and noticed their heart ra...

Amber1102

•8 days ago

4 Replies

Systemic scleroderma fluid on the heart

My daughter (6) was diagnosed with systemic scleroderma in August. She was hospitalised a couple of weeks ago with a large amount of fluid on the heart which...

My daughter (6) was diagnosed with systemic scleroderma in August. She was hospi...

Domrolle

•9 days ago

1 Reply

Mycophenolate question

Sorry to ask such a silly question! My husband was diagnosed is January with diffused cutaneous Systemic scleroderma, severe Raynaulds and ILD. He has been on...

Sorry to ask such a silly question! My husband was diagnosed is January with dif...

new-to-us

•9 days ago

3 Replies

worsening rash face ears elbows

hi husband has MCTD currently taking prednisolone mycophenolate and Hydroxychlorquine for the last 3 months, improved slightly but now the rash round his eyes...

hi husband has MCTD currently taking prednisolone mycophenolate and Hydroxychlor...

Jrob14

•9 days ago

4 Replies

Scleroderma extended panel results help understand please

Hi, I’ve just got results from recent Scleroderma panel, saying Hep2 screen positive with weak nucluer homogenous pattern and scleroderma immunoblot is...

Hi, I’ve just got results from recent Scleroderma panel, saying Hep2 screen posi...

ShonaGreen

•12 days ago

3 Replies

Recent In-Patient Experience

Where do I start? Rheumatology referred me for a colonoscopy, but wanted me to stay the day before and after rather than making it a day case. On the one hand,...

Where do I start? Rheumatology referred me for a colonoscopy, but wanted me to s...

Lupiknits

•15 days ago

19 Replies

Secondary or severe Raynaud’s, starting Sildenafil

Hi, I had Rheumatology appointment today originally requested for bad chilblains with brown discolouring on toes which are either freezing & purple or burning...

Hi, I had Rheumatology appointment today originally requested for bad chilblains...

ShonaGreen

•20 days ago

11 Replies

Have you found ways to help with acid reflux?

Background... I have Systemic Sclerosis (SSc) with lung involvement and bronchiectasis, the SSc has also damaged my oesophagus. My worst daily irritation is...

Background... I have Systemic Sclerosis (SSc) with lung involvement and bronchie...

Rescue5

•20 days ago

2 Replies

Question about anti-bodies

Hi all, I wonder what people know about this : is having a Scl-70 positive always connected to the diffuse form of scleroderma? I seem to be reading...

Hi all, I wonder what people know about this : is having a Scl-70 positive alw...

itexpat

•20 days ago

17 Replies

Bosentan

Saw rheumatology today and have been prescribed bosentan for severe reynaulds and ulcers. Wondering how others have got on with it. No other drug has helped at...

Saw rheumatology today and have been prescribed bosentan for severe reynaulds an...

Spook257

•22 days ago

5 Replies

Mycophentolate and travel

Thank you everyone for your replies regarding me taking mycophenolate it has really helped. Just one more question has anyone still travelled abroad ? How have...

Thank you everyone for your replies regarding me taking mycophenolate it has rea...

0794dee

•24 days ago

4 Replies

Mycophenolate immunosuppresants

Can anyone please tell me of their experiences on this drug. I have just been prescribed them for a lung condition related to scleroderma.The thought of being...

Can anyone please tell me of their experiences on this drug. I have just been pr...

0794dee

•25 days ago

19 Replies

Natural supplements

Is anybody taking any natural supplements to help and if so which ones? I went to a chiropractor today to try to ease my arthritic hips and he mentioned a...

Is anybody taking any natural supplements to help and if so which ones? I went ...

Lily52

•25 days ago

9 Replies

old timer

Male 92 later this year. Tingling and numbness in cold fingertips but not toes. Don’t know whether related but 60 years ago had a nasty thick bruising...

Male 92 later this year. Tingling and numbness in cold fingertips but not toes. ...

Oldmerv

•25 days ago

2 Replies

Is it Reynauds?

Hi All,Newbie here! I got diagnosed by my GP with Reynauds a few years back due to presenting with sore hands caused by the cold. I have had no tests yet just...

Hi All,Newbie here! I got diagnosed by my GP with Reynauds a few years back due ...

LozzaPurple05

•25 days ago

15 Replies

I am on mycophenalate , don’t know why ?

I am on this and can’t tell any difference, forgot to ask why she has put me on it. Any ideas ?

I am on this and can’t tell any difference, forgot to ask why she has put me on ...

Freezyfeet

•26 days ago

4 Replies

Coffee and Raynaud

Hello, I wonder what people are doing about coffee. I drink a lot of it, as it does help with constipation, but does it make Raynaud worse? What are people's...

Hello, I wonder what people are doing about coffee. I drink a lot of it, as it d...

itexpat

•26 days ago

29 Replies

Hydroxychloroquine medication

Hi, Good Morning, My Rheumatologist as just asked the pharmacy to prescribe me Hydroxychloroquine, to see it will help with joint pain and Sjogrens symptoms,...

Hi, Good Morning, My Rheumatologist as just asked the pharmacy to prescribe me ...

Buttsy

•26 days ago

19 Replies

lip fillers and scleroderma

hello everyone, I am booked in to get lip fillers as my mouth has really thinned over the last few years. When I spoke to the hospital they said they don’t...

hello everyone, I am booked in to get lip fillers as my mouth has really thinn...

MaryC13

•27 days ago

10 Replies

rituximab infusion

hi rheumatologist recommended rituximab infusion to help reduce symptoms (painful joints, grottons papules, breathlessness, fatigue), but mentioned there are a...

hi rheumatologist recommended rituximab infusion to help reduce symptoms (painfu...

Jrob14

•27 days ago

5 Replies

Post-ileoprost?

I have reynaulds with ulcers on toes and fingers. Being investigated for underlying cause. None of the standard meds worked so had five days of ileoprost about...

I have reynaulds with ulcers on toes and fingers. Being investigated for underly...

Spook257

•28 days ago

5 Replies

SRUK connection

Hi SRUKYou are an important organisation for us Sclerries! Do you read the posts? Your own contributions are very out of date...

Hi SRUKYou are an important organisation for us Sclerries! Do you read the pos...

Castella

•29 days ago

7 Replies

Heartburn / Acid Reflux

I have very recently been diagnosed with Scleroderma after going to the doctors when my Raynaud’s worsened. I was referred to a rheumatologist he was the...

I have very recently been diagnosed with Scleroderma after going to the doctors ...

Hollydurrr

•1 month ago

6 Replies

weight loss

hi I have suffered from significant weight loss recently after having an episode of increased heart rate and total body muscle pain with weakness. I was out on...

hi I have suffered from significant weight loss recently after having an episode...

Anniw

•1 month ago

6 Replies

Scan results

Hi all, I had a HR CT to my lungs to assess for ILD. My rheumatologist said there are no signs of ILD but the scan revealed some 'inflammation' and she asked...

Hi all, I had a HR CT to my lungs to assess for ILD. My rheumatologist said the...

itexpat

•1 month ago

1 Reply

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

Scleroderma & Raynaud's UK (SRUK)

HRCT chest BSR 2024 guidelines

treating melasma / hyperpigmentation on face from SSC?

Fractured bones, slow healing

Strong pain in neck, jaw, losing sleep often; any thoughts?

Reynauds

Nifedipine

Systemic scleroderma fluid on the heart

Mycophenolate question

worsening rash face ears elbows

Scleroderma extended panel results help understand please

Recent In-Patient Experience

Secondary or severe Raynaud’s, starting Sildenafil

Have you found ways to help with acid reflux?

Question about anti-bodies

Bosentan

Mycophentolate and travel

Mycophenolate immunosuppresants

Natural supplements

old timer

Is it Reynauds?

I am on mycophenalate , don’t know why ?

Coffee and Raynaud

Hydroxychloroquine medication

lip fillers and scleroderma

rituximab infusion

Post-ileoprost?

SRUK connection

Heartburn / Acid Reflux

weight loss

Scan results

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