Jump to content
Sclero Forums
Agnes81

Hello from Leeds.

Recommended Posts

Hello. I have secondary Raynaud's syndrome, cyanosis and I have sores on the hands and feet. I have narrowed blood vessels and circulation problems. I have taken medication; nifedipine, naftidrofuryl, aspirin, diltiazem, sildenafil + losartan. I have losartan now. I have suspected lupus.

 

Thank you for your time.  

 

Agnes81.

Share this post


Link to post
Share on other sites

Hi Agnes,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with Raynaud's; it must be very painful and debilitating. I have Raynaud's, but thankfully not as severely as you describe.

 

It is possible that Lupus and Scleroderma can overlap, so you could exhibit features of both, which does make the diagnosis very difficult. We do recommend that, if possible, our members consult a Scleroderma Specialist as this very complex disease does require expert knowledge.

 

I've included a link to our medical pages on Raynaud's, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Agnes

 

Welcome! By sores do you mean ulcers? I have foot ulcers myself and have for years. Although I have mild Raynaud's my ulcers are not caused by blood flow issues but the skin breaks down because of the systemic scleroderma. Not something I recommend.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I think my rheumatologist said that nifedipine was OK for Raynauds's but I'm sure he said not for secondary Raynaud's., He gave me Losartan, but it made me vomit.

 

I've now been on Ramipri for about a week and it seems to be helping a bit, but it's too early to be sure as the weather has been a bit milder and it might be the latter that is helping - we shall see when it gets colder again.

 

Interestingly I asked my general practitioner about nifedipine and she described it as "a horrible drug" and said that she thought that it's side effects would be worse than it's benefits - but that was 2 weeks before they diagnosed lSSc.  I think when she said this, she thought that it was primary and it was not so bad as it is now.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×