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Fewer Mycophenolate Adverse Events in Scleroderma Lung Study.

pf treatments immunosuppressants clinical trials

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#1 Joelf

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Posted 09 January 2016 - 10:48 AM

Fewer Mycophenolate Adverse Events in Scleroderma Lung Study.

 

Mycophenolate mofetil can be substituted for cyclophosphamide for the immunosuppressive treatment of scleroderma-related interstitial lung disease and might even be safer. Medscape, 11/02/2015. (Also see Pulmonary Fibrosis Treatments, Immunosuppressants and Clinical Trials)

 

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#2 regalize

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Posted 10 January 2016 - 05:12 AM

Joelf, interesting info here.  Thanks. 

 

I have rapid onset Diffuse Cutaneous systemic sclerosis (scleroderma) at aged 70.  Have been dragged screaming into taking mycophenolate because of progression. Initial dose was OK - 500mg daily and upping to twice daily.  Increase to 1500mg daily has seriously compromised liver function. Rheumatologists agree efficacy with this drug is not conclusive for scleroderma but say there is nothing else.  Am battling with them for more information on Resunab which is being trialed right now in US, at least with good results so far.  I am about to throw the lot down the toilet. Good luck and let me know how you are doing.



#3 Joelf

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Posted 10 January 2016 - 06:37 AM

Hi Regalize,

 

I'm pleased that you found the article interesting.

 

I would just point out that I don't actually take mycophenolate myself, although I've taken azathioprine (another immunosuppressant) for the last six years. When I first began taking it, I suffered a similar problem to you, in that my liver enzymes became very high; however, that problem was solved by my tinkering around with the dosage (under the guidance of my consultant.)

 

I would advise that you go back to your consultant to see whether the dosage could perhaps be reduced, rather than coming off it altogether.

 

Kind regards,


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#4 regalize

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Posted 10 January 2016 - 07:27 AM

Thanks Joelf. One of the problems with any medication is this 'blanket dose', I.e., 'all fits one'. No one has considered my age, my small physique, or my weight. I am coming up 70, am slim and small and have never been ill in my life before this.  I feel the initial dose was too much and the increase too soon. 

 

I have fortnightly blood tests (which showed up the liver compromise) and am tweaking the medications myself (the doctors don't like this). I also feel that suppressing my immune system to almost zero at my age is just not a good idea.  Bear in mind that common medical opinion that systemic sclerosis (SSc) is an autoimmune disease is still only theoretical. For myself, ANA's have had a speckled pattern so therefore not specific to an autoimmune disease (AID). However, I do accept that I have systemic sclerosis, whatever the cause. And there's the rub. No known cause, no known cure.  Am very interested in Resunab which is being trialed in the United States and is showing positive results in stage 2.

 

Thanks for your interest.  Hope you are keeping well yourself.



#5 Shelley Ensz

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Posted 10 January 2016 - 11:32 AM

Hi Regalize,

 

Welcome to Sclero Forums! 

 

I'm sorry you have rapid onset diffuse scleroderma and that you are also encountering some medication issues. Unfortunately most treatments for very severe diseases also run the risk of being quite toxic, so it is a constant weighing of the risk versus benefit.

 

Thank you for your interest in Resunab, and for mentioning it. I thought it might be helpful to explain it a bit more for others who are curious about it.

 

As it happens, Resunab is just starting Phase 2 clinical trials in the U.S., to see if it might be effective, and safe, for diffuse scleroderma. Pre-clinical studies looked promising for reducing inflammation and fibrosis without suppressing the immune system.

 

Unfortunately we have seen many potential treatments complete even phase 3, appearing to be quite positive, before being proven to be of no use for scleroderma. That is because the illness has a natural course of waxing and waning, even without any treatment at all, which usually causes great confusion, making treatments appear effective which in the end are shown have no effect at all. That's not to say this will happen with Resunab, it's just a disclaimer for scleroderma clinical trials in general.

 

Although Resunab (by Corbus Pharmaceuticals) has been fast tracked by the FDA in the U.S., the clinical process still remains quite long, especially for those of us who are eager for an effective new treatment right now. Phase 2 for this trial just started recently, and is scheduled to take 18 months. Then Phase 3 clinical trials generally take about 3 years, after that.

 

The FDA Drug Approval Process explains more. And we have many more listings of current Scleroderma Treatments and Clinical Trials on our main website.

 

:hug-group:


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