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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 6/28/2008 7:21 AM (GMT -7)   
hi guys- anyone ever talk with their docs about this? Get this- I was diagnosed with an extremely rare autoimmune disorder, pemphigus foliaceous, in 1989. Got it under control with steroids, went into remission & have been disease free since then. With the exception of a minor flare-up during pregnancy, & a flare that started about 6 weks ago. I saw my derm this past week- he gave me a topical steroid, did blood work, & we are holding off on any systemic steroid unless things go awry. My current flare is quite mild. ANYWAY- while talking with him, we started to discuss the immunology aspect- he's pretty interested in the fact that I have 2 autoimmune disorders. The drugs I am on for UC are also used to treat pemphigus- & just like with UC, they don't work for everyone. There's really no way to tell whom they're going to work for. We started to discuss the IvIg therapy, which is used with great success for pemphigus. We also talked about possibly switching Remicade for IvIg & seeing what happens. The bottom line is this- I have an appt. with my GI this coming week, just a follow-up, & my derm asked me to have my GI contact him. He wants to discuss my UC, my meds, & shop around the possibility of IvIg. I would not be a guinea pig under most cirucmstances- however, my derm is one of, if not THE, best doctors in the country for pemphigus. People literally come from all over the world to see him, & he is at the forefront of research in the field. I'm extremely lucky to have found him- the ppl. in the waiting room with me were from Atlants, GA! Plus he literally saved my life back in '89. Soooo... it may be cool! I would give the IvIg a try in a heartbeat- it's prohibitively expensive, makes Remicade look like a bottle of store-brand buffered aspirin, cost-wise. But my insurance covers it in full...!!! We'll see what happens- I'll let you all know the outcome, of course. Apparently, it's stem cell stuff & things like this, the IvIg, for the future drug treaments in autoimmune disease. Just wondering if any of you have ever talked about it with your docs, whether it be for UC or any other autoimmune disorder.  
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 6/28/2008 4:49 PM (GMT -7)   
Eva Lou - Wow, I'm impressed, I had never even *heard* about IvIg until your post and I spend a great deal of time scouring medical Journals for the latest and greatest new treatments for auto-immune diseases.

Ok, what I have been able to find out explains why its so darned expensive, but thankfully (for many people's ethical reasons) its not quite stem-cell tech.

Ok, IvIg is otherwise known as Intravenous Immunoglobulin therapy. The idea of this is to inject into the patient, the pooled antibodies from the healthy immune systems of at least 1000 donors (hence the expense), with effect lasting up to 3 months. It is NOT however in any way FDA approved, or even used off label for UC or Crohn's.

For those interested in some more info, I found an article thats pretty easy to read.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 6/28/2008 4:55 PM (GMT -7)   
Hi, I am pretty familiar w/ IVIg, as i have an immune deficiency and would have been a canidate for IVIg if i had not had IGA antibodies...

I have never heard of it being used for UC or Crohns tho.

Stem Cell research is working toward remarkable things relating to autoimmune issues/cancers, ect....I have banked both my children's cord blood as i have many issues myself that could be passed on to them and we also have many issues in our family that is being researched right now to (alzhimers, cancers, MS)

I know that IVIG is extreemly expensive, tho many insurances do cover it. If your doctor considers giving it to you, they MUST make sure that you do NOT have anti IGA antibodies (which is what i have) or you could have a severe allergic reaction or even death.

Good luck, i hope this post gets some more attention.
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 6/28/2008 4:59 PM (GMT -7)   
Guess i should say that stem cells from cord blood are being used for the things i mentioned above.....
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 6/30/2008 9:35 AM (GMT -7)   
Hi guys! I have no home computer right now, so am at the library- hence the lag time in posting! But yeah- IvIg "should" work for UC, in theory. While it's not approved for use in Crohns or UC, from the sounds of it, why wouldn't it work ok for those disorders? I guess it modulates the immune system as a whole, not necessarily focusing on any specific auto-immune disorder. Anyway- I see my GI tomorrow & I plan to talk with him about it- who knows if anything will come of it, but it certainly is interesting to keep an eye on. And the stem cell stuff- I think they are also using stem cells from adult donors in auto-immune disease. I think in the future, science will focus on the immune system modulating aspect of it, as opposed to treating the symptoms of auto-immune disorders. Pretty neat. I'll let you all know what my GI thinks of it. Oh yeah- I had a bunch of blood work done last week at the dermatologists/immunologist- he should test it for the Iga antibodies. (or whatever they're called!)



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/30/2008 12:46 PM (GMT -7)   
wow that is great, I was kind of thinking the same thing the other day, wondering if I did have to go to remicade if maybe that would help my kidney disease, since that is an autoimmune disease too.

best of luck and keep us posted, wouldn't that be wonderful if they found something else to help us all!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 655
   Posted 7/11/2008 9:15 PM (GMT -7)   
I'd like to add that it's been shown to be effective for Obsessive Compulsive Disorder (IvIg)
Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Pancolitis (Mild to Moderate)
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/12/2008 2:29 PM (GMT -7)   
Good luck Eva Lou, please update us after ur appt. I would like to know what other doctors say about this...since it is not an option for me, i have never even brought it up to my gi, but im interested to see what others say!

ps, had no idea it was treating OCD!
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 

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