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

Scleroderma & Raynaud's UK (SRUK)

10,893 members • 5,442 posts

All posts for July 2022

An injection of iloprost and rituximab for systemic sclerosis Raynaud's phenomenon

Has anyone received an injection of iloprost and rituximab? After it is received, is there any improvement noticed? Also does insurance cover these 2...

Has anyone received an injection of iloprost and rituximab? After it is received...

•2 years ago

finger pad sensation

has anyone experienced an odd sensation in their finger pads ? Feels bit like I’ve burnt them on oven . I do have raynauds but this feels different . Tips of...

has anyone experienced an odd sensation in their finger pads ? Feels bit like I’...

•2 years ago

Can you help us find runners for the Royal Parks SRUK Team?

SRUK needs your help - we have a few remaining places for the Royal Parks Half Marathon that takes place on 9th October. We only have until 8th August to fill...

SRUK needs your help - we have a few remaining places for the Royal Parks Half M...

•2 years ago

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diagnosis doubts

I was diagnosed with limited systemic scleroderma 4 years ago with the usual positive ANA blood tests. But I still have difficulty believing the diagnosis –...

I was diagnosed with limited systemic scleroderma 4 years ago with the usual pos...

•2 years ago

Reflux recovery after antibiotics

I have limited systemic sclerosis. For years I have had very bad reflux and investigations have revealed oesophagitis (now controlled by PPI s), a Schatzki...

I have limited systemic sclerosis. For years I have had very bad reflux and inve...

•2 years ago

minocycline

hi all, has anyone being prescribed minocycline for calcinosis cutis, they have bad side effects which im not looking forward to t, starting monday, wish...

hi all, has anyone being prescribed minocycline for calcinosis cutis, they ha...

•2 years ago

Low thyroid levels

Hello everyone, my latest bloods have shown low thyroid levels. They're going to retest soon, but I'm wondering if this is caused by my scleroderma...

Hello everyone, my latest bloods have shown low thyroid levels. They're going ...

•2 years ago

Vaccine side effects.

Hello. Just wondering, has anyone who received the Pfizer vaccine and boosters had any long term reactions? Muscle pain spreading to arms and legs for me. My...

Hello. Just wondering, has anyone who received the Pfizer vaccine and boosters h...

•2 years ago

Mycophenolate and possible Covid

Hello. Wonder if anyone knows whether it’s advised to keep taking Mycophenolate if someone in my household has just tested positive for Covid? I did phone the...

Hello. Wonder if anyone knows whether it’s advised to keep taking Mycophenolate ...

•2 years ago

Remission

Has anyone else's Dr talked to them about remission. I have the echo voice of my rheumatologist saying 'we can put this to sleep'. What does this mean? It's...

Has anyone else's Dr talked to them about remission. I have the echo voice of my...

•2 years ago

Weight loss

Hi all. Has anyone experienced weight loss with limited Scleroderma, without trying!

Hi all. Has anyone experienced weight loss with limited Scleroderma, without tr...

•2 years ago

Hard peeling skin on my palms

does anyone else have this symptom?

does anyone else have this symptom?

•2 years ago

Purple toes when sitting

Hi, I would like to know if anyone is experiencing something like this. My toes turn purple when I am sitting or standing, and they hurt, they turn back to...

Hi, I would like to know if anyone is experiencing something like this. My toes ...

•2 years ago

Warm weather and Secondary Raynauds

I had thought that with the warmer/hot! weather the pain in my fingers and condition of my destroyed nails would have improved - but I was obviously just being...

I had thought that with the warmer/hot! weather the pain in my fingers and condi...

•2 years ago

Sclerodactyly (clawed hands) & Iluprost

Does anyone know if Iluprost treatment can help with Sclerodactyly? I have been offered it to treat my Raynauds and Scleroderma but am hoping it might help my...

Does anyone know if Iluprost treatment can help with Sclerodactyly? I have been ...

•2 years ago

Iloprost

Hi, has anyone had Iloprost in the summer and did it help with the burning?

Hi, has anyone had Iloprost in the summer and did it help with the burning?

•2 years ago

How Many Of You Developed HAVS Raynaud's or Vibration Finger at Work?

My GP believes I have HAVS, my OH doesn't, but my OH is basing it on more advanced symptoms for a stereotypical person in the construction business as in big...

My GP believes I have HAVS, my OH doesn't, but my OH is basing it on more advanc...

5ftFemInConstruction

•2 years ago

Milk

Does any body know if your aloud to drink lots of milk and yogurts with this. Dont want too much calcium if its going to cause problems.

Does any body know if your aloud to drink lots of milk and yogurts with this. Do...

•2 years ago

Gall bladder operation

I have scelerderma and Raynauds as well as lupus and myositis, diagnosed 3 years ago, and had my gallbladder out two days ago. Has anyone else had this...

I have scelerderma and Raynauds as well as lupus and myositis, diagnosed 3 years...

•2 years ago