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

Scleroderma & Raynaud's UK (SRUK)

11,113 members•5,638 posts

All posts for February 2020

Coronavirus and travel with Crest syndrome.

Due to travel to Thailand and Dubai. I have CREST syndrome. Has anyone had any advice from their specialist about Coronavirus? I’m worried about going with my...

Due to travel to Thailand and Dubai. I have CREST syndrome. Has anyone had any a...

•5 years ago

Give me strength!! Anyone know where there’s a decent rheumatologist in the U.K. on NhS??

Okay I’m not going into a massive rant as I don’t think I will stop crying but just seen my rheumatologist and I’ve just had enough. Honestly!! I cannot take...

Okay I’m not going into a massive rant as I don’t think I will stop crying but j...

•5 years ago

Scleroderma in the bowel?

Hi does anyone know what bowel biopsies need to look for when testing for scleroderma in the bowel? My rheumatologist asked for biopsies to be taken to...

Hi does anyone know what bowel biopsies need to look for when testing for scler...

•5 years ago

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Does anyone have arthritis in there feet?

I've recently been told I have arthritis in my left foot. Possible to do with the raynaurds. As I have cold feet all the time. Thanks Lb

I've recently been told I have arthritis in my left foot. Possible to do with th...

•5 years ago

confused on discontinuation

Am confused now...was put onto nintedinab recently...so not sure why you have been told it is discontinued...am in Scotland so is it only available to us here?...

Am confused now...was put onto nintedinab recently...so not sure why you have be...

•5 years ago

MCTD = RA?

Can Connect Tissue Disease lead to Rheumatoid Arthritis?

Can Connect Tissue Disease lead to Rheumatoid Arthritis?

•5 years ago

Informal chilled out meeting 17.05.20 in Birmingham

We have a date and venue for our next meeting in Birmingham. It's on Sunday 17th May 2020 at 11.30am. It'll be in the restaurant of John Lewis, 2 Station...

We have a date and venue for our next meeting in Birmingham. It's on Sunday 17th...

•5 years ago

INSOMNIA!!! Horrifying insomnia .....

Anyone else ??? W/insomnia this bad ... I have been suffering the worst insomnia . I sleep an average of 3-4 hours for every 3 days .... I have went OVER 2...

Anyone else ??? W/insomnia this bad ... I have been suffering the worst insomni...

•5 years ago

Does your Raynauds effect your thumbs?

Has your Raynauds started to effect your thumbs? Mine has. What does it mean if it effects the thumbs? Thank you for reading my post.

Has your Raynauds started to effect your thumbs? Mine has. What does it mean if ...

•5 years ago

Are you an adult living with chronic pain?

Millions of people are living with a condition which causes chronic or persistent pain, negatively impacting physical and psychological well-being. The SCRIP...

Millions of people are living with a condition which causes chronic or persisten...

•5 years ago

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Student Raynaud’s Disease Documentary

A student filmmaker at London Screen Academy in Highbury is currently creating a documentary for their school about Raynaud's Disease. This person would like...

A student filmmaker at London Screen Academy in Highbury is currently creating a...

•5 years ago

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Question about slow bowel motility

Hi, Just wondering if anyone else has slow bowel motility but without constipation? I have been told I have slow bowel motility and the assumption is I have...

Hi, Just wondering if anyone else has slow bowel motility but without constipat...

•5 years ago

Does anyone take plaquenil ?

Ive been taking plaquenil for a few months now , im not sure if its been helping me i wake up with joint pain and tender muscles and sciatica pain , i was...

Ive been taking plaquenil for a few months now , im not sure if its been helping...

•5 years ago

To do or not to do?

I'm so fed up of waking up and feeling like my hands and feet are made of concrete and I'm more exhausted than when I went to bed the night before. On days...

I'm so fed up of waking up and feeling like my hands and feet are made of concre...

•5 years ago

Update on Idiopathic Pulmonary Fibrosis treatment.

Just a wee update on my previous post on being diagnosed with IPF. I have now been prescribed the drug Nintenidab and Mycophenalate has been removed as it had...

Just a wee update on my previous post on being diagnosed with IPF. I have now be...

•5 years ago

Any advise to help with Sjorgens.. Dry mouth is uncomfortable..

Hi everyone, Have been living with Crest, with Neuropathy and Sjorgens, The dry mouth seems to be getting worse and i can,t eat much without the aid of water...

Hi everyone, Have been living with Crest, with Neuropathy and Sjorgens, The dry ...

•5 years ago

Salty taste

Hi I’ve had a really salty taste too for 10 weeks now and it’s driving me crazy. It’s relentless and I’m preoccupied with it now to the extent it’s affecting...

Hi I’ve had a really salty taste too for 10 weeks now and it’s driving me crazy....

•5 years ago

Anti inflammatory diet

Happy Valentines Day! Just wondering if anyone has bought a nutribullet and tried smoothies/ juicing to fight inflammation or you can recommend any books?

Happy Valentines Day! Just wondering if anyone has bought a nutribullet and trie...

•5 years ago

Chilblains or ulcers?

I’m getting lots of painful bumps on my hands/fingers at the moment (see photo). Are these chillblains or ulcers? I’m on sildenifil for my raynauds but...

I’m getting lots of painful bumps on my hands/fingers at the moment (see photo)....

•5 years ago

Anyone tried the IQORO for reflux

Hi, I was just wondering if anyone has come across a device called the IQORO? It's supposed to be able to fix reflux and swallowing difficulties. www.iqoro.com...

Hi, I was just wondering if anyone has come across a device called the IQORO? It...

•5 years ago

Mycophenolate advice

I started taking Mycophenolate 4 weeks ago with a plan that after 4 weeks, I double the dose. I had read that I needed to avoid taking it with Lanzoprazole so...

I started taking Mycophenolate 4 weeks ago with a plan that after 4 weeks, I dou...

•5 years ago

Raynauds and cataract operation

Hallo everyone. New here. I am a 62 year old female. I have primary Sjogrens with overlap diffuse systemic sclerosis and bonus Raynauds on top. The steroids I...

Hallo everyone. New here. I am a 62 year old female. I have primary Sjogrens wi...

•5 years ago

Informal meeting 23.02.20 reminder

Hi folks, just a gentle reminder of our upcoming meeting in Birmingham. I have set up a face book page too, where we share photos etc. the link is...

Hi folks, just a gentle reminder of our upcoming meeting in Birmingham. I have s...

•5 years ago