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

Scleroderma & Raynaud's UK (SRUK)

11,113 members•5,638 posts

All posts for September 2020

Working

Has any managed to carry on working whilst living with Diffuse Systemic Sclerosis? If not what benefits are you able to claim? TIA

Has any managed to carry on working whilst living with Diffuse Systemic Sclerosi...

•4 years ago

Varicose veins

Are scleroderma patients more susceptible to varicose veins because of their hardened blood vessels? Can scleroderma patients undergo treatment for these veins...

Are scleroderma patients more susceptible to varicose veins because of their har...

•4 years ago

Royal Free

Another question! How do I get referred to the Royal Free SSc specialist unit? I live near enough to make it easy to get to. My care is currently under three...

Another question! How do I get referred to the Royal Free SSc specialist unit? I...

•4 years ago

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Coping with diarrhoea

I have systemic scleroderma with my main symptoms being Raynaud's, bronchiectasis and gastro problems, specifically loss of motility and SIBO. At the moment I...

I have systemic scleroderma with my main symptoms being Raynaud's, bronchiectasi...

•4 years ago

Could be useful to some...

I just happened across this interesting series of videos for yoga for Scleroderma. I am trying to keep my hands and body in working order by doing the...

I just happened across this interesting series of videos for yoga for Scleroderm...

•4 years ago

Raynaud's phenomenon in legs?

Hi, I'm pretty new to Raynaud's but am certain I have it. I find that when outside in the cold or running on a treadmill, after about 10 minutes I feel a...

Hi, I'm pretty new to Raynaud's but am certain I have it. I find that when outsi...

•4 years ago

Rituximab

Hi has anyone been having Rituximab alongside Cyclophosphamide pulse infusions? This maybe my next course of action as I have just had my 5th cyclophosphamide...

Hi has anyone been having Rituximab alongside Cyclophosphamide pulse infusions? ...

•4 years ago

New to all of this

so I’m new to all of this. I came back positive for scl-70 antibody at a level 1.0 (anything less than 1.0 being negative) I have oval-like splotches on the...

so I’m new to all of this. I came back positive for scl-70 antibody at a level 1...

•4 years ago

Calcinosis

I have SS, myositis and calcinosis. I'm told there is no treatment for calcinosis. Does anyone else have calcinosis? And if so what treatment have you tried?

I have SS, myositis and calcinosis. I'm told there is no treatment for calcinosi...

•4 years ago

Pitted Edema

Hi there , I was diagnosed with systemic sclerosis last week . I just had a PET scan yesterday and will see the consultant next week. One of my symptoms is...

Hi there , I was diagnosed with systemic sclerosis last week . I just had a PET ...

•4 years ago

Feeling very sick

Hi all, can you help me please? I’m struggling to eat without feeling sick or that food isn’t going down. I’m trying to eat little and often but I’m even...

Hi all, can you help me please? I’m struggling to eat without feeling sick or th...

•4 years ago

Delicate??????

Forget the word ‘delicate’ when discussing bowel problems!!!! Everybody has bowels, and bowel activity. I have had systemic sclerosis for thirty years. I have...

Forget the word ‘delicate’ when discussing bowel problems!!!! Everybody has bowe...

•4 years ago

A Food Choices & Scleroderma Study

The New Orleans Scleroderma Patient Care and Research Center is running a study to assess the the impact that various diets might have on scleroderma symptoms....

The New Orleans Scleroderma Patient Care and Research Center is running a study ...

Partner•4 years ago

Hello! I'm new here and seeking help from fellow sufferers from a symptom that no doctor has been able to diagnose.

I have had SS with all crest symptoms for 40 years. 3 years ago I had a below the knee amputation on my right leg due to ulcers. I have a strange...

I have had SS with all crest symptoms for 40 years. 3 years ago I had a below ...

•4 years ago

Systematic sclerosis

Hi Please can someone help me I think I may have SS Last week I had an episode when my fingers went blue after being in the cold. I have been very stressed...

Hi Please can someone help me I think I may have SS Last week I had an episode...

•4 years ago

GINGKO for IVF pregnancy

Hello to all, I am about to have my embryo transfer through IVF and i am taking Gingko for about 6 years now for primary Raynaud’s. My ivf clinic seems to...

Hello to all, I am about to have my embryo transfer through IVF and i am taking ...

•4 years ago

Reduced lung capacity scleroderma

Does anyone else have a scleroderma that reduces their lung capacity. Looking to connect with someone. Thank you in advance.

Does anyone else have a scleroderma that reduces their lung capacity. Looking to...

•4 years ago

Shoulder Pain - CREST Symptom?

My mother has CREST and at the start of lockdown started feeling a stiffness in her left shoulder. Six months on she barely has any movement and is in constant...

My mother has CREST and at the start of lockdown started feeling a stiffness in ...

•4 years ago

Back to school

Hi, does anyone else with scleroderma have children going back to school? I have 2 teens going back, one to a sixth form college in a nearby city, the other to...

Hi, does anyone else with scleroderma have children going back to school? I have...

•4 years ago