Wednesday, 8 June 2016

DAY 8: Raynaud's Management, Scleroderma Awareness Month 2016

DAY 8  Scleroderma Awareness Month: Raynaud's Management 

Today’s post shows the management of Raynaud’s as advised by the Scleroderma Study Group at The Royal Free hospital in London. UKSSG   

I discussed in detail, yesterday, DAY 7 Raynaud's some of the practical realities of managing Rayanud’s, as there is no cure. 

The drugs used are targeting symptom suppression as opposed to reaching the underlying cause. 

Most of these drugs are accompanied with the side effects expected with blood pressure lowering drugs, namely, dizziness, nose bleeds, light head etc. 

Fluoxetine is known to be used ‘off license’ to treat Raynaud’s symptoms. As indeed, so is Sildenafil, used as an option. Personally, I did not tolerate either of these drugs, and after 3 bouts of Iloprost, I made a solemn promise to myself that I would never have that again, due to the side effects. 

I accept that these treatments do work for some patients, but not for me! 

I have found that prevention is better than cure when trying to manage Raynaud’s symptoms. I wear lots of layers as well as gloves and Ugg boots all year round.

I take Bosentan 125mg twice a day, which helps with my symptom control, as well as, it has reduced the number of digital ulcers to my hands and toes, which has been most welcome!
My hands are the best that they have been since diagnosis, I am delighted to say…… I have gloves for every occasion and look like an eskimo all of the time!! Living the dream, hoping for a cure!!

This article was originally published here  in my Column with Scleroderma News.

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.

Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld

29th June World Scleroderma Day. Read more here  

Scleroderma Awareness flashback 2016. Read more here  
Scleroderma Awareness 2016 Campaign Index Click here  
Please use the icons below to share this article #SclerodermaAwareness
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here 

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