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

Scleroderma & Raynaud's UK (SRUK)

11,113 members•5,638 posts

All posts for October 2021

Iloprost

Hi, does anyone have side effects from Iloprost that goes on for weeks and weeks? Also, has anyone else had Iloprost since Covid and how do you manage with...

Hi, does anyone have side effects from Iloprost that goes on for weeks and weeks...

•3 years ago

Webinar today zoecovid on vaccines and the immunosupressed

Think they also upload to YouTube for later viewing. Link below...

Think they also upload to YouTube for later viewing. Link below...

•3 years ago

Sclerodactyly treatment suggestions?

Sclerodactyly diagnosis. I was diagnosed with systemic sclerosis in September after suffering from Reynauds disease for many years and carpal tunnel syndrome...

Sclerodactyly diagnosis. I was diagnosed with systemic sclerosis in September af...

•3 years ago

Want to take advantage of all our features? Just log in!

or

Pneumococcal vaccine and 5 year booster

Just interested to find out if others with limited systemic sclerosis (taking mycophenolate) have a 5 year booster for their pneumococcal vaccine. Thanks.

Just interested to find out if others with limited systemic sclerosis (taking my...

•3 years ago

Iloprost & increase dead hands/pins and needles?

I’ve just had my 5 day iloprost infusion and have noticed that the week following this treatment I have an increased experience of my hands going dead like...

I’ve just had my 5 day iloprost infusion and have noticed that the week followin...

•3 years ago

Rituximab and Systemic Sclerosis

Hi, just wondered if anyone has large calcium deposits ( I have one approx 9 x 6x 5 cm) associated with systemic sclerosis and been given rituximab...

Hi, just wondered if anyone has large calcium deposits ( I have one approx 9 x ...

•3 years ago

Anyone else have scleroderma en coup de sabre?

Hello everyone - finally had a diagnosis of scleroderma en coup de sable this year after eight years under an MS specialist. Visited the dermatologist today...

Hello everyone - finally had a diagnosis of scleroderma en coup de sable this ye...

•3 years ago

FWIW….

As other replies, no problem to me. No obvious side effects and it seems moderately effective. I don’t bother with it though the summer months but as the days...

As other replies, no problem to me. No obvious side effects and it seems moderat...

•3 years ago

Be the first to reply

Tight skin and ankle swelling

I have systemic scleroderma (CREST) and am on steroids, Rituximab and plaquenil. One ankle is very tight it’s sometimes difficult to flex the foot up and...

I have systemic scleroderma (CREST) and am on steroids, Rituximab and plaquenil....

•3 years ago

Nifedipine

Hi All, Earlier this year I told I have Raynauds and they think it's primary. Last winter my fingers were really painful and my toes went numb and had cramps...

Hi All, Earlier this year I told I have Raynauds and they think it's primary. ...

•3 years ago

Any hints or tips?

Hi I was diagnosed with Raynauds many years ago. Managed to ignore the symptoms when working. Now I’m not working I notice them more. I get achy legs a lot. I...

Hi I was diagnosed with Raynauds many years ago. Managed to ignore the symptoms ...

•3 years ago

Gloves for Raynaud's

Hello, I have Raynaud's can anyone recommend gloves which work in cold weather, thank you, sasky

Hello, I have Raynaud's can anyone recommend gloves which work in cold weather, ...

•3 years ago

Covid19 vaccine for Raynaud Syndrome

Hi, Can someone with Raynaud syndrome take the Asta Zeneca vaccine for covid19?

Hi, Can someone with Raynaud syndrome take the Asta Zeneca vaccine for covid19...

•3 years ago

Foam sclerotherapy

Has anyone had this procedure ether NHS or privately? I have recently had a stent fitted and blood clot removed. Since being bandaged on right leg for ulcers...

Has anyone had this procedure ether NHS or privately? I have recently had a ste...

•3 years ago

Be the first to reply

KCO

Hi , had rheumatologist’s letter and it mentioned a KCO of 90%. What is KCO and is 90% a reasonable value?

Hi , had rheumatologist’s letter and it mentioned a KCO of 90%. What is KCO and ...

•3 years ago

Dear all I have an abscess on my elbow which is not healing after many courses of antibiotics. The hospital say they cannot operate.

Dear all I have an abscess on my elbow which is not healing after many courses of antibiotics. The hospital say they cannot operate to remove the poison as it...

Dear all I have an abscess on my elbow which is not healing after many courses o...

•3 years ago

Systemic sclerosis

I have limited cutaneous systemic sclerosis, but my doctor told me that my condition is overlapping and would progress to diffuse systemic sclerosis. My...

I have limited cutaneous systemic sclerosis, but my doctor told me that my condi...

•3 years ago

ANA

Dear all Quick question please .. Has anyone tested positive anti PMScl but negative ANA? Many thanks in advance

Dear all Quick question please .. Has anyone tested positive anti PMScl but ne...

•3 years ago

Be the first to reply