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

Scleroderma & Raynaud's UK (SRUK)

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Wrist warmers

Winter again! (and the unwarmerable hands are even colder).I remember seeing a post in the past recommending wrist warmers as an aid to warming hands. I wonder...

Winter again! (and the unwarmerable hands are even colder).I remember seeing a p...

magria

•4 days ago

8 Replies

Appointment with Dr Pauling

Good morning, I have a referral appointment with Dr Pauling a week today. I'm feeling very anxious about it. I wondered if anyone could let me know what to...

Good morning, I have a referral appointment with Dr Pauling a week today. I'm ...

AMC7

•5 days ago

15 Replies

Gloves

Can anyone recommend some thin gloves for wearing during my keep fit class?I have some very old ones I'm sure I bought from Sruk

Can anyone recommend some thin gloves for wearing during my keep fit class?I hav...

KathleenMary

•6 days ago

8 Replies

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Gloves recommendation for Raynauds

hi all, any recommendations please for Raynauds hands with painful tissue scarring? I’ve had it quite badly this year and have succumbed to being medicated...

hi all, any recommendations please for Raynauds hands with painful tissue scarri...

Nw6London

•9 days ago

5 Replies

Nailfold Capillaroscopy to help with my Chilblain lesions / Erythromelalgia / Raynaud's mystery?

Hi all 👋 I'm new here, and I joined because I'm trying to get answers as to what's causing the chilblain-like lesions I get on my fingers and toes, and...

Hi all 👋 I'm new here, and I joined because I'm trying to get answers as to wha...

Goldcrest100

•9 days ago

45 Replies

LDN FOR CREST

A good friend of my sister has had CREST for 30 years, I spoke with her and it has been a tuff journey, in the early days there wasnt really any specified...

A good friend of my sister has had CREST for 30 years, I spoke with her and it h...

Oztrax

•11 days ago

Be the first to reply

Methotrexate skin cancer

Recently started on methotrexate again and was surprised to read all the warnings in tge literature pack about light sensitivity and resulting cancers. I...

Recently started on methotrexate again and was surprised to read all the warning...

Brychni

•12 days ago

3 Replies

I need some medication advice ( suggestions )

Hi , So I recently posted about sidenafil - I have been taking this for a couple of months with no effect on my Raynaud’s My gp has upped my dosage to 3x a...

Hi , So I recently posted about sidenafil - I have been taking this for a coup...

PBMB

•12 days ago

10 Replies

Are iloprost infusions beneficial?

After my latest rheumatologist telephone appointment, he suggested that I had an iloprost infusion for my Raynauds as for some reason, I seem to be feeling the...

After my latest rheumatologist telephone appointment, he suggested that I had an...

MoominMomma

•15 days ago

9 Replies

Scleroderma bowel

Hi All, I have systemic scleroderma, pulmonary hypertension and kidney cancer. All diagnosed around the same time. The thing that affects daily life the most...

Hi All, I have systemic scleroderma, pulmonary hypertension and kidney cancer. A...

Badflower

•15 days ago

26 Replies

Anyone living with Systemic Sclerosis Moray/ Banffshire/Aberdeenshire in Scotland?

Hi, I rarely meet anyone with SSc and just wondered how many people are actually living with this horrible disease in my area and what specialists they see/...

Hi, I rarely meet anyone with SSc and just wondered how many people are actual...

Eden1234

•20 days ago

2 Replies

Specialist recommendations

Hello everyone, I'm thinking of asking for a referral to a specialist scleroderma/Sjogren's doctor, rather than the general rheumatologist I see here in...

Hello everyone, I'm thinking of asking for a referral to a specialist sclerode...

Duck33

•20 days ago

14 Replies

CREST

I am too sick for my Sclero just to be local Morphea. My "sign of the sabre" is growing every few days, and haved at least 3 other areas on my scalp. My GP is...

I am too sick for my Sclero just to be local Morphea. My "sign of the sabre" is ...

Oztrax

•21 days ago

3 Replies

Sub talar distraction fusion

I am wondering if anyone has had this surgery,I need to have it carried out with an iliac crest bone graft and tendon transfer. I have exhausted all other...

I am wondering if anyone has had this surgery,I need to have it carried out with...

UCTD

•22 days ago

Be the first to reply

Sudden attack from all sides

Hi there,This is the first time I have posted and am just wondering whether anyone else has experienced what I had last night. I was diagnosed with early onset...

Hi there,This is the first time I have posted and am just wondering whether anyo...

Stageleft

•22 days ago

5 Replies

Tofacitinib for Calcinosis

Hi, just wondered if anyone has tried Tofacitinib for calcinosis? I have posted before re very large calcium deposits but it seems quite rare to have the...

Hi, just wondered if anyone has tried Tofacitinib for calcinosis? I have poste...

Eden1234

•23 days ago

3 Replies

Silicol Gel - anyone tried it for reflux?

Hi everyone, Just wondering if anyone has tried Silicol Gel for reflux... (and general gut issues). I've seen it in Boots and in Holland and Barrett and was...

Hi everyone, Just wondering if anyone has tried Silicol Gel for reflux... (and ...

Duck33

•26 days ago

4 Replies

rituximab

he guys so I had my second infusion today as was supposed to have last week but postponed due to a horrible cold I manged to pick up from my grandchildren. It...

he guys so I had my second infusion today as was supposed to have last week but ...

Jaq1971

•27 days ago

2 Replies

MEDICATIONS

There doesnt seem to be any "gold treatment" medications for SC or morphea. Myocephalate seems to be popular and is a T cell inhibitor for the skin disease...

There doesnt seem to be any "gold treatment" medications for SC or morphea. Myo...

Oztrax

•28 days ago

7 Replies

Sudden facial rash

Diagnosed with LCSS for several years. Raynauds plus digestive issues, reasonably well controlled. Minor skin issues, dryness, freckles, white patches increase...

Diagnosed with LCSS for several years. Raynauds plus digestive issues, reasonabl...

glasslass

•28 days ago

8 Replies

esophogeal problems

hi there, im not sure if this is the right forum, but does anyone else suffer from food impactions, and if so did you get any treatment? (i have diagnosed...

hi there, im not sure if this is the right forum, but does anyone else suffer fr...

redmaggie

•1 month ago

19 Replies

ADVICE ON SCALP MORPHEA

hello everyone, had a tuff 3 months, painful lines (like stinging pain) on my scalp developed in mid july (2024) with a constant headache. Was 100% before...

hello everyone, had a tuff 3 months, painful lines (like stinging pain) on my sc...

Oztrax

•1 month ago

6 Replies

Football Belly

I have intestinal failure due to gastro involvement with scleroderma. My stomach is huge and I look about 8 months pregnant. I'm told this is bacterial gas but...

I have intestinal failure due to gastro involvement with scleroderma. My stomach...

Lorfal

•1 month ago

5 Replies

Painful digital ulcers

Hi I have Raynaud's as a consequence of scleroderma. Still having tests to pin down whether any of my internal organs are affected. For the last 15 months I...

Hi I have Raynaud's as a consequence of scleroderma. Still having tests to pin ...

Greetwell

•1 month ago

4 Replies

Donegallover

I have scleroderma and had a heart attack a few months ago, has anyone else had both issues and if so were medications changed from normal beta blockers

I have scleroderma and had a heart attack a few months ago, has anyone else had ...

Churchlover

•1 month ago

4 Replies

mycophenolate

hello I have just joined this network and am looking for any information on the drug mycophenolate. I have systemic scleroderma which is affecting my lungs...

hello I have just joined this network and am looking for any information on the...

flamgirl

•1 month ago

10 Replies

Xylitol study

Hello everyone, I posted here recently looking for ideas for combating acid reflux, and I mentioned how I use Xylimelts for dry mouth, which seem to help...

Hello everyone, I posted here recently looking for ideas for combating acid re...

Duck33

•1 month ago

6 Replies

Searching for life insurance with a scleroderma diagnosis

I've been searching for life insurance for the first time since my diagnosis and I'm struggling to find a company that will insure me. Ironic considering that...

I've been searching for life insurance for the first time since my diagnosis and...

MintChoclate

•1 month ago

3 Replies

scleroderma & menopause

hi all you wonderful people - I am struggling a little and wondered how everyone else has experienced menopause with this disease. Especially differentiating...

hi all you wonderful people - I am struggling a little and wondered how everyon...

ruablue

•1 month ago

2 Replies

gut/brain connection and Rifaximin

I hesitated to send this obscure bit of research. It’s actually on healthy volunteers and a very small sample. I’m going on holiday tomorrow and struggling...

I hesitated to send this obscure bit of research. It’s actually on healthy volun...

Halfwayuphill

•1 month ago

13 Replies

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

Scleroderma & Raynaud's UK (SRUK)

Wrist warmers

Appointment with Dr Pauling

Gloves

Gloves recommendation for Raynauds

Nailfold Capillaroscopy to help with my Chilblain lesions / Erythromelalgia / Raynaud's mystery?

LDN FOR CREST

Methotrexate skin cancer

I need some medication advice ( suggestions )

Are iloprost infusions beneficial?

Scleroderma bowel

Anyone living with Systemic Sclerosis Moray/ Banffshire/Aberdeenshire in Scotland?

Specialist recommendations

CREST

Sub talar distraction fusion

Sudden attack from all sides

Tofacitinib for Calcinosis

Silicol Gel - anyone tried it for reflux?

rituximab

MEDICATIONS

Sudden facial rash

esophogeal problems

ADVICE ON SCALP MORPHEA

Football Belly

Painful digital ulcers

Donegallover

mycophenolate

Xylitol study

Searching for life insurance with a scleroderma diagnosis

scleroderma & menopause

gut/brain connection and Rifaximin

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