Monday, 1 May 2017

BSR and BHPR Guideline For The Prescription And Monitoring Of Non Biologic Disease Modifying Anti Rheumatic Drugs. Raynaud's, Scleroderma, Autoimmune Rare Disease.

BSR and BHPR Guideline.

The Prescription And Monitoring Of:

Non Biologic Disease Modifying Anti Rheumatic Drugs. 

Raynaud's, Scleroderma, Autoimmune Rare Disease.



Need for guideline:

The mainstay of treatment for inflammatory rheumatic disease involves Disease Modifying anti-rheumatic drugs (DMARDs).

The last 30 years have seen enormous shifts in the use of DMARDs, with earlier initiation in disease course as well as combination strategies.

Many of the drugs used have potential for harm as well as benefit.

Appropriate screening prior to DMARD initiation, as well as vigilant monitoring during therapy, are required to minimize the risk of harm.

This current guideline supersedes the previous 2008 BSR/BHPR guideline.

DMARDs covered by this guideline:

The following DMARDs are covered in this guideline: apremilast, AZA, CSA, HCQ, LEF, mepacrine, MTX, Minocyline, MMF, sodium aurothiomalate/myocrisin (gold), SSZ and tacrolimus.


Table 1:

Summary of monitoring requirements 


Drug 
Laboratory monitoring 
Other monitoring
Apremilast 
No routine laboratorymonitoring 

None

AZA 
Standard monitoring schedulea 
None 
Ciclosporin 
Extend monthly monitoring longer termb 
BP and glucose at each monitoring visit 
Gold 
Standard monitoring schedulea 
Urinalysis for blood and protein prior to each dose
HCQ 
No routine laboratory monitoring 

Annual eye assessment (ideally including optical coherence tomography) if continued for >5 years
LEF 
Standard monitoring schedulea 

BP and weight at each monitoring visit 
Mepacrine 
No routine laboratory monitoring 
None  

MTX 

Standard monitoring schedulea 

None 

MTX and LEF combined 

Extend monthly monitoring longer termb 
None 
Minocycline 
No routine laboratory monitoring 

None 
Mycophenolate 
Standard monitoring schedulea 
None 
SSZ 

Standard monitoring schedule for 12 months then no routine monitoring needed 
None 
Tacrolimus 
Extend monthly monitoring longer termb 
BP and glucose at each monitoring visit 

a

Standard monitoring as per recommendations I and II for DMARD blood monitoring schedule when starting or adding a new DMARD.

b

Patients who have been stable for 12 months can be considered for reduced frequency monitoring on an individual patient basis. BP: blood pressure.


To read the full guidelines, Click here   

To read the executive summary, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here   

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, Click here  
   



World Scleroderma Day 29th June 2016, 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:
The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


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


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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - 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  


#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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