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

Scleroderma & Raynaud's UK (SRUK)

10,838 members • 5,411 posts

All posts for April 2023

autoimmune ear problems?

Sorry this goes on a bit. Along with my UCTD with systemic sclerosis gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really...

Sorry this goes on a bit. Along with my UCTD with systemic sclerosis gut proble...

•1 year ago

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Worried about Scleroderma!

Hi everyone, I am 74 years old and was diagnosed with Reynauds at least 50 years ago.Recently, I have started to feel very poorly and now my fingers are...

Hi everyone, I am 74 years old and was diagnosed with Reynauds at least 50 years...

•1 year ago

systemic sine sclerosis

Sines systemic sclerosis morning all I have a question alongside all of my other symptoms I seem to be getting sore gums and ulcers in my mouth this happens...

Sines systemic sclerosis morning all I have a question alongside all of my oth...

•1 year ago

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need to have pacemaker fitted

Hi I have had Diffuse Systemic Sclerosis for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted...

Hi I have had Diffuse Systemic Sclerosis for about 14 years and been told ver...

•1 year ago

polymyalgia rheumaticia and connective tissue disorder

Dear friends, just wondering if anyone else has developed PMR as well as CTD/ fibro,inflammatory arthritis?

Dear friends, just wondering if anyone else has developed PMR as well as CTD/ fi...

•1 year ago

Living with Systemic Schlerosis

I have limited Systemic Schlerosis. I struggle with the cold, have severe Raynaud syndrome and have digestion issues. My skin is affected as are my joints....

I have limited Systemic Schlerosis. I struggle with the cold, have severe Rayna...

•1 year ago

Fear of PAH

Hi all, Looking for some tips on how you deal with health anxiety with this conditions. I was diagnosed with limited scleroderma around 4 years ago and have...

Hi all, Looking for some tips on how you deal with health anxiety with this con...

•1 year ago

Can Raynauds cause symptoms elsewhere in body?

Hi everyone,as well as the classic signs on the fingers etc can Raynauds cause migranes(which radiates into ear/jaw area and gastro issues(burping after...

Hi everyone,as well as the classic signs on the fingers etc can Raynauds cause m...

•1 year ago

sertraline and iloprost

Does anybody take sertraline and have regular iloprost infusions ? I have recently been prescribed sertraline by my gp - reading the patient information it...

Does anybody take sertraline and have regular iloprost infusions ? I have recen...

•1 year ago

Consistent Flareups

Does anyone have periods where it does not flare up & then just pops up with a vengeance? Mine has started that after months of nothing.

Does anyone have periods where it does not flare up & then just pops up with a v...

•1 year ago

Share your story, connect with others!

I have posted about this before but my account got deleted I guess so I'm gonna give it another go (thank you so so much to everyone who has helped so far, it...

I have posted about this before but my account got deleted I guess so I'm gonna ...

•1 year ago

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Raynaud’s Pain

Has anyone been prescribed pain medication for Raynaud’s pain when the spasms occur. Tylenol and Advil helps a little bit.

Has anyone been prescribed pain medication for Raynaud’s pain when the spasms oc...

•1 year ago

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Decreasing Forced Vital Capacity

Hello, Just wondering what your first symptoms were if you have been diagnosed with ILD. At my last rheumatology appointment I found out that my FVC has been...

Hello, Just wondering what your first symptoms were if you have been diagnosed ...

•1 year ago

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Weight Loss and Systemic Sclerosis

Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is...

Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has ...

•1 year ago

📊Help SRUK Help You: Take Part in our Patient Registry Survey

SRUK have launched a Patient Registry Survey, which asks for your feedback on how you might feel about sharing health information. A patient registry would:...

SRUK have launched a Patient Registry Survey, which asks for your feedback on ho...

Partner•1 year ago

Intestinal Lung Disease

Has anyone had scarring of the lungs due to Scleroderma?

Has anyone had scarring of the lungs due to Scleroderma?

•1 year ago

Reynauds syndrome

hi, I’m very new to Reynauds as in a diagnosis and it seems it is linked to my B12 deficiency and me having long covid. Any tips or input to what to expect as...

hi, I’m very new to Reynauds as in a diagnosis and it seems it is linked to my B...

•1 year ago

probiotics for scleredoma

For scleredoma has anyone been taking a probiotic for gut health..and seen any positive signs in relation to your symptoms

For scleredoma has anyone been taking a probiotic for gut health..and seen any...

•1 year ago

Diarrhea from SSc ILD medication Ofev (Nintedanib)

Dear SSc folks, are you suffering from significant Diarrhea resulting from taking Ofev (Nintedanib) ? If so, how do get this under control ? Thank you :-)

Dear SSc folks, are you suffering from significant Diarrhea resulting from ta...

•1 year ago

RoActemera (tocilizumab) and headaches

after years of struggling with dcss I finally got the use of RoActemera approved. I’m 6 weeks n in noticing subtle changes already, altho it can take up to 6...

after years of struggling with dcss I finally got the use of RoActemera approved...

•1 year ago

lung specialist appointment

Hello After over 3 months of chest problems I have booked to see a respiratory specialist privately.- appointment 2 weeks. At the same time my nhs appointment...

Hello After over 3 months of chest problems I have booked to see a respiratory ...

•1 year ago

Egg harvesting and mycophenolate/hydroxychloroquine

We are considering egg harvesting to potentially (one day) use the embryos, if the option presents itself. Ie, if/when my disease is less active and more...

We are considering egg harvesting to potentially (one day) use the embryos, if t...

•1 year ago

stem cell therapy for Sceleredoma

Hi has anyone explored this option for systemic Sceleredoma?

Hi has anyone explored this option for systemic Sceleredoma?

•1 year ago