DAY 8 Scleroderma Awareness Month – RAYNAUD’S Treatment Guidelines

DAY 8 Scleroderma Awareness Month – RAYNAUD’S Treatment Guidelines
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Day 8 Scleroderma Awareness month

DAY 8  Scleroderma Awareness Month – RAYNAUD’S Treatment Guidelines

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

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

A brief reminder:

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

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

Prevention is most certainly better than cure when managing Raynaud’s, especially as there is no cure!

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!

PIC BY BENJAMIN FURST/MERCURY PRESS (PICTURED: NICOLA WHITEHILL'S HANDS WHICH ARE NOW DEFORMED) A lonely ‘real life Tin Man’ has missed out on ever finding love or having children because she is trapped at home by a rare condition. Nicola Whitehill, 43, had to give up any hope of having a relationship or family aged 24 when she was diagnosed with scleroderma, a rare and incurable condition which causes her skin and blood vessels to harden, and given just 15 months to live. Now the former barrister must spend three hours every day soaking herself in oil lathering on moisturiser before she is able to move her joints at all. SEE MERCURY COPY

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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