Tuesday, 7 June 2016

DAY 7: Raynaud's phenomenon, Scleroderma Awareness Month 2016


DAY 7  Scleroderma Awareness Month - Raynaud's phenomenon


Raynaud’s can be an initial symptom in the autoimmune patient (MS, Lupus, Fibromyalgia) and, which of course, includes scleroderma. 



It is important to emphasise that Raynaud’s can also present on its own, without any autoimmune involvement. 


The current understanding is that, if a patient has scleroderma they will more than likely have Raynaud’s also. 

However, Raynaud’s symptoms are not a direct evidential link to autoimmune disease and the relevant medical tests must be carried out to determine this. 

Raynaud’s can affect many areas of the body, as the above image shows. 

Attacks can last for seconds / minutes / hours. The colour change to the affected body part, indicates lack of blood to those areas, which, upon its return, feels similar to red hot, fine needles being stabbed in the area. 

This makes for the perfect ulcer forming environment, and should an ulcer(s) be present, Raynaud’s will make them even worse and impair healing. 

There is currently no cure, with treatments designed to suppress the symptoms, accompanied, usually, with the unwanted side effects of blood pressure altering drugs. 

Fluoxetine is known to be used ‘off license’ to treat Raynaud’s symptoms. As indeed, so is Sildenafil, and is also 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 it again, due to the intense side effects, including my head feeling as though my skull was going to explode, and oversensitivity to light. 

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 my Raynaud’s symptoms. I wear lots of layers as well as, gloves and Ugg boots all year round. 


Hottest day of 2013 - I need to wear Ugg boots and gloves




I take Bosentan 125mg twice a day, which helps with my symptom control, and 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!!


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  

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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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