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Biomarker for Diffuse Scleroderma skin has been discovered!


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IVIG treatment


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#1 greypilgrim256

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Posted 03 November 2014 - 01:45 PM

Has anyone had any experience with IVIG treatment or spoken to their doctors about it?  I have read many positive things about it in Sclero treatment. 

 

http://www.ncbi.nlm....les/PMC3216365/

 

 



#2 Shelley Ensz

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Posted 03 November 2014 - 02:43 PM

Hi GreyPilgrim,

 

IVIg is a good question. As I understand it, several of our members have had it or are having, but usually for reasons other than scleroderma, like for immune deficiencies.

 

My late husband had some IVIg treatments because he was getting too many severe infections after his lung transplant, so I'm a little familiar with them.  They cost thousands of dollars per treatment, and each dose requires blood from thousands of people, so they are somewhat like medical gold...rather sacred, not easily spared, and hard to get approval for them from insurance companies.

 

IVIg is delivered intravenously, of course.  Treatments usually take half a day; it looks in that study like the dose for scleroderma required treatments for 5 consecutive days each month.  Side effects can be mild to intolerable.  If I remember right, I think Gareth got anaphylactic shock from one (Margaret please clarify) so his treatments were amended to help prevent that in the future.  When they try to speed up the dose is often when people encounter side effects, and since they take so long there is always a temptation to try to speed things up.

 

So, it is an interesting thing, but right now probably most accessible for scleroderma patients who also have an immune deficiency.

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 05 November 2014 - 03:44 AM

Hi Greypilgrim,

 

I've no experience of this treatment myself, but we have a medical page IVIg Intravenous Immunoglobulin which I hope you'll find interesting and informative.

 

Kind regards,


Jo Frowde
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#4 Amanda Thorpe

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Posted 17 November 2014 - 05:04 AM

Hello Greypilgrim

 

Has your rheumatologist suggested IVig? I know some people with scleroderma have it but it's not a mainstream scleroderma treatment, I wonder if the cost and potentially short term benefits have anything to do with this? Just speculation of course because, apart from the information on the ISN, I know little about it.

 

Take care.


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#5 Margaret

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Posted 23 November 2014 - 07:03 AM

Hi Greypilgrim ,

 

I have a 26 years old son who receives IVIg infusions, once a month, due to an immuno deficiency.  His body can fight viral infections but not bacterial infections.  Like Shelley said, he did have an anaphalactic shock reaction, last December, after receiving them for two years..    After  8 months of no infusions, serious medical issues due to infections, they came up with another concoction/brand.  He's had 4, so far, with no reaction.  The cost is upwards of $10,000 + per infusion!!  We are fortunate to have two medical insurance policies, that split the bill.  We could not afford that ourselves.

 

My son was dx'd with UCTD, at the age of 18, and I can say that I have seen no improvement in that aspect of his medical issues.  He still has the esophageal dismotility, Raynaud's, Sjogren's, hypothyroidism,and chronic pain/fatigue.   At age 18, his blood work was ANA+ for scleroderma and anti-RNA polymerase 1/111, but his only sclero issues were the esophageal dismotility....no skin issues.  Everyone is different in this disease......not sure if infusions would help others or not.

 

Take care, Everyone.

Margaret

Mom to Gareth, DS/ASD