SARGRAMOSTIM Off label for Crohn's

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 1/16/2010 9:08 PM (GMT -7)   
Curious to know if anyone has even heard of this?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/17/2010 8:31 AM (GMT -7)   
Can't say that I have. I will have to read up on this. Sorry!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/17/2010 4:44 PM (GMT -7)   
I've heard of the med, but no idea the efficacy of it in Crohn's patients. Nor have I been suggested by a doc to give it a try. Will your insurance company cover it? If you have the opportunity, I'd so go for it! I'd love to hear about your experience!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 1/17/2010 5:28 PM (GMT -7)   
YES!!!! SARGRAMOSTIM = Leukine.
 
about 5 years ago I was in the Leukine (SARGRAMOSTIM) Test Study.  At the time it was a double Blind test to get Crohn's Patients who were on high doses of Prednisone and could not get off of the high dose without failing to take the Leukine and wean off the Pred sucessfully. 
 
All I can say is it worked (I had been on 30mg for 2 years) wonderfully!  I definitely got the "Real" things as my labs showed the results with my blood counts, sed rates, etc., and sucessful tapering off of Prednisone.   I stayed on the Leukine for 8 months and then went off about 3 months after I weaned off the Prednisone completely - per the Test study instructions.  Basically took me into remission per lab test results, and CDA - I felt wonderful for the first time in years :)
 
I then flared about 4 months after going off Leukine (SARGRAMOSTIM) and went back on "open Label" i.e. REAL thing guaranteed and it never really worked like it did the first time around, so they took me off of it after a few months.  If I understand from my GI, it doesn't seem to work to go off and then back on the Med to get one in remission, but it will work to get patients off of Prednisone.  My GI has never brought it back up as a Medication option, but then again - I also have Lupus and most the meds are a "no-no" since they can give patient Drug Induced Lupus - so for me there are not alot of options, I am taking Methotrexate and it is wonderfully keeping my Lupus and Crohn's under control. 
 
Overall I have to say my experience with Leukine was pretty good - at the time of the study and the open Label Med. I had to inject daily, at first I had horrible site reactions (massive welt where I injected - about 5" round) until the Mfg/Test Study Facility figured out via my skin reaction and my lab work that my dose was too high.   Once they lowered the dose it got much better (no injection site reaction).  One weird thing that use to happen though was it made my blood actually clot when they would draw my blood tubes (it happened pretty consistantly when I was on the Leukine until they lowered my dose, then it went back to normal).   You also couldn't inject subcutaneously so it was painful to inject with a 1" long needle - I looked like a massive bruise with bruises up and down my legs, way too painful to inject on my stomach, but again that was 5 years ago and we have come a long way now.
 
I don't know where they stand with Leukine (SARGRAMOSTIM) at this point as I don't follow it anymore.  So possibly it has come around to where you can get it now?  I know it would be Extremely expensive.  I also believe it is used in boosting blood counts of Chemo patients - I think it has been used for that for quite a long time - it has been quite a while since the test study, but I know I still have all the info from the Mfg (Bayer??) for when I enrolled in the test study. 
 
Good luck!
 
 


Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection weekly, 1000mg Canasa Supp. as needed, Probiotics


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 1/17/2010 5:43 PM (GMT -7)   
Ellen, What an awesome reply. Thank you! There was another one that i saw for patients WHO CANNOT take 6-mp. Looks cool.

sweeterthanhoney
Veteran Member


Date Joined Oct 2005
Total Posts : 540
   Posted 1/18/2010 2:16 AM (GMT -7)   
how did you find the care you got while you where on this study? My 20 yr daughter will be starting a trial study in a few weeks............ for MLN0002 Trial -AKA- Vedolizumab
dx: fibromyalgia, IBS-C,Myofacial Pain Syndrome, Chronic Headaches, hypothyroidism,anemia, insomnia,mild depression.
 
Meds:
Clonazapam .25mgs, Oxy IR 2.5-3xs/day 5 mgs at bedtime, Synthroid, Zopiclone, flexeril 
 
Supplements:    professional vit/mineral, magnesium/malic acid, Ester C,
 
Daughter Jerica 18, Dx: Crohn's, amitriptyline 50mg, Forvia, AZA 150mgs
 
 Husband with treatment resistant depression:   Effexor-450mgs
 
                                     
Jerimiah 29:11                      
 


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 1/18/2010 6:45 AM (GMT -7)   
My trial was actually done through my GI's office - they are a large practice that actually has it's own clinical Research Dept, so I was under the care of my GI the whole time and the GI that runs the Dept.  There are also nurses within the Dept. so they took my blood, oversaw my first injection, dispensed the Meds and supplies, etc.
 
I am also close to living near Hershey Medical Center where there are trials all the time - again it would be with a Dr. that oversees the Dept in conjunction with my own GI who also participates in the trials. 
 
Whomever you are doing the Test Study/Trial through should be overseeing your daughter the whole time.
 
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection weekly, 1000mg Canasa Supp. as needed, Probiotics

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