Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
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Wednesday, 8 June 2016
DAY 8: Raynaud's Management, Scleroderma Awareness Month 2016
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
article was originally published here in my Column with Scleroderma News.