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

Scleroderma & Raynaud's UK (SRUK)

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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

•1 day 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

•3 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

•4 days ago

18 Replies

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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

•4 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

•4 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

•4 days ago

14 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

•5 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

•6 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

•6 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

•6 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

•7 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

•7 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

•8 days ago

6 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

•11 days 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

•11 days 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

•11 days ago

Be the first to reply

Blood tests - ANA positive, high IgM, borderline low C3

Hi, I have a Rheumatology appointment soon following a bad case of chilblains which I've had for nearly 2 months on my toes and heels, now ending up with...

Hi, I have a Rheumatology appointment soon following a bad case of chilblains w...

ShonaGreen

•12 days ago

5 Replies

Has anyone healed or slow down your reynaulds by holistic healing?

I am interested in knowing if anyone experience this. I am doing more things holistically and quite frankly the meds didn't do that much for me so I went off...

I am interested in knowing if anyone experience this. I am doing more things ho...

DaliaC

•12 days ago

3 Replies

possible Raynauds?

I wanted to see some pictures of other people’s raynauds in their hands and feet if possible? I have an appointment with my doctor next week to discuss with...

I wanted to see some pictures of other people’s raynauds in their hands and feet...

Kayi88

•13 days ago

17 Replies

advice please

Hi, I am struggling a little since I was diagnosed with scleroderma last year and looking for a little bit of advice. My story behind the diagnosis was...

Hi, I am struggling a little since I was diagnosed with scleroderma last year...

Lily52

•14 days ago

18 Replies

new and hello

I’ve never posted or joined a forum before so bear with me. I was diagnosed with reynaulds four years ago which has gradually got worse. Multiple, daily...

I’ve never posted or joined a forum before so bear with me. I was diagnosed with...

Spook257

•15 days ago

3 Replies

Security and stomas at the airport!

Thank you everyone for your helpful replies this perhaps needs addressing in the training of security staff at airports so they may understand the venerability...

Thank you everyone for your helpful replies this perhaps needs addressing in the...

newbe

•15 days ago

Be the first to reply

Ileostomy my experience at airport

I just wondered if I was overreacting about my recent incident going through customs at Birmingham airport. After putting my luggage through x ray I stood in...

I just wondered if I was overreacting about my recent incident going through cus...

newbe

•16 days ago

17 Replies

Onycholysis (nails detaching from nail beds)

Does anyone else suffer with their nails detaching from their nail beds due to Raynaud's? I have ruled out any other reason for this happening (fungal...

Does anyone else suffer with their nails detaching from their nail beds due to R...

Ren82

•18 days ago

21 Replies

Musculoskeletal pain, tightness, and swelling in limited cutaneous systemic sclerosis - feel as if I have heavy weights on my arms and legs?

Hi 😊 I was diagnosed with limited cutaneous systemic sclerosis in October 2023, aged 58, after sudden onset Raynaud’s in May 2023, together with very obvious...

Hi 😊 I was diagnosed with limited cutaneous systemic sclerosis in October 2023,...

Giggles65

•19 days ago

26 Replies

Losartan

hi , I’m just starting taking losartan 50mg as a last resort as nothing else has worked or I cannot tolerate side effects . Please could people share any...

hi , I’m just starting taking losartan 50mg as a last resort as nothing else h...

PBMB

•20 days ago

9 Replies

Recently diagnosed with Reynaud's

Hi, I'm new to this and don't really speak up much, I have suffered with cold hands and feet since I was a teenager, Doctor confirmed Reynaud's at my...

Hi, I'm new to this and don't really speak up much, I have suffered with cold ha...

Geegee1292

•20 days ago

4 Replies

Pain when typing on a keyboard

Hi, I have recently been diagnosed with limited scleroderma. I have been experiencing a lot of heat, joint pain, tingling and swelling in my fingers when...

Hi, I have recently been diagnosed with limited scleroderma. I have been experie...

relaxandchill

•25 days ago

7 Replies

Pulmonary involvement?

Hi everyone, I have just been diagnosed with Scleroderma at an initial stage. Reading about it, I understand that one of the complication is lung involvement....

Hi everyone, I have just been diagnosed with Scleroderma at an initial stage. R...

itexpat

•26 days ago

25 Replies

Is this just SIBO

Hello everyone I’ve had some new symptoms this last month and thought id ask you helpful people if you’d come across this. Firstly I’ve had UCTD with...

Hello everyone I’ve had some new symptoms this last month and thought id ask y...

Halfwayuphill

•27 days ago

6 Replies

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

Scleroderma & Raynaud's UK (SRUK)

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

Blood tests - ANA positive, high IgM, borderline low C3

Has anyone healed or slow down your reynaulds by holistic healing?

possible Raynauds?

advice please

new and hello

Security and stomas at the airport!

Ileostomy my experience at airport

Onycholysis (nails detaching from nail beds)

Musculoskeletal pain, tightness, and swelling in limited cutaneous systemic sclerosis - feel as if I have heavy weights on my arms and legs?

Losartan

Recently diagnosed with Reynaud's

Pain when typing on a keyboard

Pulmonary involvement?

Is this just SIBO

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