EULAR,
Raynaud's Treatment Guidelines in patients with SSc.
Scleroderma,
Autoimmune Rare Disease.
Update of EULAR recommendations for the treatment of systemic sclerosis
RP in patients with SSc (SSc-RP)
Recommendation:
Dihydropiridine-type
calcium antagonists, usually oral nifedipine, should be considered for
first-line therapy for SSc-RP. Phosphodiesterase type 5 (PDE-5) inhibitors
should also be considered in treatment of SSc-RP.
In view
of costs and feasibility, the experts recommended that intravenous prostanoids
are considered when oral therapies (including calcium channel blockers and
PDE-5 inhibitors) have failed. As most drugs used for treating RP may induce
vascular side effects, the experts recommend particular attention if
prostanoids are combined with other vasodilators.
Recommendation:
Fluoxetine might be considered in treatment of SSc-RP attacks.
DUs in patients with SSc
Recommendation:
Intravenous iloprost should be considered in the treatment of DUs in patients
with SSc.
Recommendation:
PDE-5 inhibitors should be considered in the treatment of DUs in patients with
SSc.
Considering
the fact that oral prostanoids showed lower efficacy for treatment of
SSc-related RP, as compared with intravenous iloprost (see section on RP), the
experts decided, based on the results of the aforementioned two RCTs, to
recommend
intravenous
iloprost as a treatment for DUs in patients with SSc.
Further
studies are required to confirm beneficial effect of intravenous iloprost in
prevention of development of DUs in patients with SSc. In view of risk of side
effects and route of administration usually requiring hospitalisation,
intravenous iloprost should be
considered in particular in patients with SSc with DUs not responding to oral
therapy. In severe cases, combination therapy with oral vasodilator and
intravenous iloprost can be used. However, the increased risk of side effects
should be taken into account.
Recommendation:
PDE-5 inhibitors should be considered in the treatment of DUs in patients with
SSc. Side effects of PDE-5 inhibitors are discussed in the previous paragraph
regarding PDE-5 inhibitors in the treatment of RP. Based on these data, the
experts concluded that PDE-5 inhibitors can be efficacious in treating
SSc-related DUs.
Whether
other than tadalafil PDE-5 inhibitors can prevent development of new DUs in
patients with SSc needs to be clarified in further studies.
Recommendation:
Bosentan should be considered for reduction of the number of new DUs in SSc,
especially in patients with multiple DUs despite use of calcium channel
blockers, PDE-5 inhibitors or iloprost therapy.
At
present, there is insufficient evidence that endothelin receptor antagonists
(ERA) have beneficial effects on SSc-RP attacks either. There are two major
concerns related to the use of bosentan and other ERA: potential liver injury
and teratogenicity.
Hormonal
contraceptives may not be reliable if co-administered with bosentan, because
bosentan may reduce their efficacy by interference with the cytochrome P450
system.
In view
of the results of both RAPIDS trials and considering potential toxicities
associated with bosentan, experts recommend usage of bosentan especially in
patients who have multiple DUs despite treatment with other vasodilators such
as calcium channel blockers, PDE-5 inhibitors and iloprost to prevent the
development of new DUs.
To view the full article.
To read my breakdown of the
full article.
#RaynaudsFreeWorld
To view Thermograph Video, Click here
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
Please DONATE to help fund medical research
into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free
Hospital, UK.
All of your monies will be used for medical research purposes only, lead by the world trail blazer Dr Kevin Howell.
Dr Howell and I, Sept 2017 |
#RaynaudsFreeWorld #RaynaudsAwarenessMonth
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Twitter: @RaynaudsRf
Living the dream,
hoping for a cure ....
Click here for Twibbon
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research provides the brightest light
for the illumination of the rare disease
patients’ plight.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
Sept 2017 |
I am eternally grateful to the global scleroderma
trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and
dedication to unlocking the scleroderma enigma, is nothing other than,
superhuman.
I am truly humbled and inspired by their work
ethic. I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self
employed practising barrister. Further to having been told in 1997, by my
diagnosing doctor, that I was looking at a 15month prognosis.
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: Raynauds Scleroderma Awareness Global Patients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
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