Ready to Stop Remicade

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shoegrl2
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Date Joined Nov 2005
Total Posts : 675
   Posted 3/13/2008 2:51 PM (GMT -7)   
 I have been on Remicade every 8 weeks since December 2005. It has done it's job for me and brought me to remission. My recent colonoscopy confirmed this. My Dr. was amazed at how great my rectal area looked (only a Dr. could appreciate that!!!!) since that is where my disease started and was at its' worst. He took biopsies of many psuedo-polyps (which I understand to be scar tissue all through my colon). So, if my biopsies come back clean then I have come to the decision to stop the Remicade. My reasoning for this is: 1) Remicade was the only drug therapy that I was able to achieve remission with, as I tried many other treatments for years before Remicade, with no success.
2) Now that I am in remission then maybe I can stay that way with an oral maintenance drug. My Dr. has prescribed Lialda (3 per day).
3) If I have a terrible flare I can start the Canasa suppositories again too, to help.
4) IF (big IF) I can't maintain remission with oral maintenance/rectal drugs, then I will go to Humira and do the injections.
Any thoughts out there about my "logic"? I don't want to stay on Remicade forever and have wanted to stop the infusions for quite some time. So, going out on top seems sensable - right? Please let me know what you think, or whether anyone else has tried this type of switch successfully. Thanks!!! Your opinions mean a lot to me - as no one understands like you people! tongue
 
Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


GardenerJames
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Date Joined Jan 2006
Total Posts : 616
   Posted 3/13/2008 3:02 PM (GMT -7)   
I was non responsive to medication too until I started Remicade.
Why is it that you want to get off Remicade?
I wonder this especially since one of your back up plans is Humira which is basically the same thing.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 3/13/2008 3:29 PM (GMT -7)   
Well, it's not that I want Humira, but I need a back-up just in case. And it's possible that my body will build up immunities to the mouse proteins used in the Remicade. It's difficult to get back on Remi once it is stopped. As for my reason to stop remicade: I just don't want to stay on that classifacation of drug for an indefinate period of time. I can't explain it, but I just don't want to be pumping that drug into my system forever. I will never know whether I can stay in remission without the heavy guns unless I try it. I want to try it while things are looking good. IF I can't maintain remission then I'll know that I HAVE TO have the remicade/humira and I will deal with it. But I won't know if I don't try. What if my body does great and I can just take oral drugs and watch my diet, exercise regularly, meditate, etc.? I'm holding on to that little bit of hope, and if it doesn't work out - then I'm prepared for that and I'll know what I have to do. Make sense?
Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


GardenerJames
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Date Joined Jan 2006
Total Posts : 616
   Posted 3/13/2008 3:54 PM (GMT -7)   
Well, I look forward to hearing how you do. Unfortunately, as you say, we won't ever know what's possible until we try it. My GI has always said, once we put you on Remicade we don't really know what to do.
So, I sincerely thank you for being a "guinea pig" and testing the waters, we all benefit from our collective experience. I hope you are able to maintain a mouse free remission!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 3/13/2008 4:00 PM (GMT -7)   
Thanks James. I must admit that I am a little bit nervous. My next Remicade would be April 2, so that will most likely be canceled and I'll be on the Lialda by then. I'm just so curious to see how this goes! I'm thinking that there may be a little "blip" for a while, but then again - maybe not! I'll think positive!

Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 3/13/2008 4:06 PM (GMT -7)   
Good luck, Debbie. I hope this works out just as you want. Keep us updated!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 3/13/2008 4:16 PM (GMT -7)   
Does your GI know your plan?  what does Dr say about it?  
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 20 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 3/13/2008 4:26 PM (GMT -7)   
When do you start the Lialda?
I guess my only advice is to try to assume things will be fine and if there is a little blip try not to stress about it, cause as we all know that will make it worse :(
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 3/13/2008 5:31 PM (GMT -7)   
ChristieAnn, Yes, my Dr. is on board with this. We have discussed it several times and he didn't want to make any changes until after doing a colonoscopy (which was last Friday). I should have my biopsy results tomorrow and then he will give me the clear to fill the Lialda Rx if biopsies are o.k. My Dr. is easy to talk to and is open to ideas or suggestions that I may have. He can't exactly tell me "NO", since it's my body; but, he understands where I am coming from. He recently talked to both me and my husband about this transition and he is willing to let me try this. So, James, I might start the Lialda as early as next week.
Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 3/13/2008 5:57 PM (GMT -7)   
Well, Debbie,  I wish you good luck on your plans.     I wish you a flare free transition. :-)
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 20 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/13/2008 6:53 PM (GMT -7)   
Debbie - I know that you've checked this out and have not taken the decision lightly. I completely understand your reasoning.

My only concern is a bad reaction to Lialda... Will you have enough time to see how you react to it before you stop the remi?

I'm so happy that you're doing so well! I'm sure that leaves lots of time to cuddle the really cute grandson you have :)

Best of luck!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 3/14/2008 5:16 AM (GMT -7)   
Debbie, I know the last time we went out to lunch you were debating on stopping the Remi. So you decided to jump ship eh? I am sending you postive thoughts and hugs. You're going to have to let us know what happens.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/14/2008 7:23 AM (GMT -7)   
Debbie,

My advice based solely on my personal experience, I stopped Asacol/Lialda cold turkey and was put on prednisone the same day (no one thought it would be an issue b/c pred is supposed to help quickly), I went into a horrible flare two weeks later and it lasted a long time and I am still not back to where I was.

If I were in your shoes....I would want to be on Lialda more than two weeks before I was supposed to get my next remicade injection, give it a chance to build up in your system and I would do a full dose of Remicade on April 2nd and a half dose the next time and a quarter dose the time after that. Personally, I would just be really cautious, b/c of what I went through. I would want to taper it or maybe you taper the by weeks instead of doses???  not sure but ........That's my 2 cents.

Also, I am curious, why did you start Remicade before trying Lialda or other 5ASA's before (at least that's my impression, sorry if I got it wrong)?


Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007 - partial remission since 03/08
Prednisone 40mg 1xday (taper 5mg a week = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Post Edited (Beth75) : 3/14/2008 8:29:51 AM (GMT-6)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/14/2008 11:23 AM (GMT -7)   
This is my opinion; PLEASE PLEASE PLEASE don't get off the Remicade! PLEASE! I would give anything to be doing as well as you. I had a reaction to Remicade and stopped it, I was like, cool, this yoga and new diet is keeping me ok. What a slap in the face! I am VERY SICK now, 3 months since my last remicade infusion. I am struggling with my insurance to try to start Humira, in the meantime, I am so sick I am hardly ever leaving the house. I am getting desperate enough to try prednisone with remicade or anything I can to get back to only flaring twice a week as opposed to now, flaring about 6 days a week. What if you get off the Remicade and you need it again and have a reaction and the Humira doesn't work for you?
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 3/15/2008 7:22 AM (GMT -7)   
Beth,
I have considered having the April Remicade treatment, just as you suggested, to give my body time to adjust to the Lialda. I think that's a good point. When I started the Remicade treatments the Dr. wasn't prescribing Lialda for UC yet (2005). I was, however, on Colozal, Canasa, Prednisone and 6MP for almost 3 years before going on Remicade. But, none of those drugs got me to remission.
Sherry,
Yes, as you know, I have been considering this move, not lightly either, for quite some time. Now seems as good a time as any to make the change. I no longer have the stress of a job every day and have time to really designate/donate to taking care of myself. AND we need to get lunch again soon!
Princesscolon,
Thank you for your input. I understand your trepidation to stopping the Remicade. Were you in remission when the Remicade was stopped? I have been on Remicade for 2 1/2 years and have 2 colonoscopies to verify that I am and have been in remission for quite some time. I am hoping that my body will adjust to the change. Of course, if I can't take Remicade again or if Humira doesn't work for me, then I am screwed. But since Remicade worked so well for me, then I have no reason to believe that Humira won't be as effective.
Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/15/2008 9:24 PM (GMT -7)   

I am also heading toward stopping the Remicade.  However, I am still on Imuran and Colazal.  My doc actually wants me to stop the remicade if possible because he doesn't feel I need to stay on such a strong drug if I don't need it.  However, I am doing it very slowly.  I started stretching the intervals between my drips.  First to 10 weeks then 12 weeks - now 14 weeks.  My goal is to eventually just stop.  But not yet.  We want to see how my body adjusts at each interval.  I would definitely suggest that you get on some other form of maintenance drug BEFORE you stop.

Good luck - let us know how you do!


KTM


TJX
New Member


Date Joined May 2009
Total Posts : 5
   Posted 6/6/2009 9:44 AM (GMT -7)   
Hi,
Has anyone successfully stopped Remicade. I would appreciate if you can email me wallstreetx@yahoo.com

Also, any ideas or suggesstions to what are other options if Remicade fails. I don't want to go for surgery.

I was diagnosed with uc last year and have yet to achieve remission. I did get into remission for short period of time using steroids but flared on fast taper.

Thanks in advance.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 6/6/2009 1:14 PM (GMT -7)   
After trying to decrease my dose of Asacol with bad results, I probably would be very wary of stopping something like Remicade. I would worry it would cause me a huge flare that would end in surgery that I can't afford. Not a good idea, especially for someone like me with no insurance. I hope you had great luck and remain in longterm remission!!
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 6/6/2009 5:12 PM (GMT -7)   
Are you sure your insurance would cover Humira? Mine would not.

I look at it like this: Remicade is a treatment, not a cure.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 6/6/2009 9:22 PM (GMT -7)   
Just a heads up Humira, from what I've known is for those who have stopped responding to Remicade, with choosing to stop it and try other things, I'm concerned that you may be refused to use this drug. Maybe as just a suggestion, you should keep using the Remicade until you have stopped responding to it, I'd be thankful that that drug is working for you. Personally I'd be scared to get off a drug that has maintained my remission to try others and risk the possibility to step out of remission. For me, I know that I am on Humira for life, but I'm happy about it because it brought me into remission and I haven't had any real problems since being on this drug. I've felt GREAT, I mean better than I've been in a LONG time.

Good luck on your choice.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 6/7/2009 9:51 AM (GMT -7)   
That's a tough call- while I understand & agree with your reasoning for wanting off the Remicade, I'd be very leery of messing with the status quo. I also don't like the idea of pumping it into my body indefinitely, but I like that option much better than being as sick as I was before I started using Remicade! Don't forget that Humira is not approved for use in UC yet- you may have a difficult time getting your insurer to cover it. Also, to me they're one & the same- a biologic is a biologic is a biologic! Are you willing to wind up on Humira for years & years also? Another thing- if you stop the Remicade & do have to go back on another biologic & it doesn't work, are you prepared to have surgery? I'm sticking with Remicade for now- I'm sure it'll eventually lose effectiveness as it already has started to do that somewhat, then who knows where I'll go from there! Good luck on your decision- please let us all know what you decide! One more thing- does your GI personally have patients he's been able to transition off Remicade with success? Does he have any stats for you on how many people are able to do that & stay in remission? Do you think you'll be able to stay in remissin forever?!?!? It just seems unlikely- not to be a downer, I really don't mean it like that. I'm afraid you're blowing your last chance, med-wise, if that makes sense. (Wait a minute! I just noticed the date on the original post- who knows whatever happened!!!)


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 

Post Edited (Eva Lou) : 6/7/2009 10:54:45 AM (GMT-6)


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/7/2009 4:44 PM (GMT -7)   
I'm sticking with Remicade. At the point it stops working or I grow increasingly leery of being on so many medications I will have the surgery. I've done the research on it and finally wrapped my mind around it, not I just need to get myself fiscally ready to shut down my business for the recovery period and then build it back up again. The economy also needs to improve before I am ready to do that, so the Remicade is buying me time and keeping me healthy. I wouldn't dream of going off it.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Gibbz24
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/6/2010 1:04 PM (GMT -7)   
Hi Debbie,

I too am looking to come off my Remicade (been on for 2 years). It has worked great for me, but my diet has been excellent and I eat more anti iflammatory foods than ever before.

I know its been a while since you came off your Remicade, but can you tell me how it impacted you? I'm afraid of getting sick again, but I believe coming off this medicine will work for me. I am just going to leave it in Gods hands.

Thanks,
Shawn
 
Hi Shawn, and welcome to HealingWell.  I'm sorry that I had to edit your email address out of your post...it is not allowed per forum rules.  You may, however, include it in your profile, which other members can see by clicking on your user name.
 
It doesn't appear that Debbie has been active on HW lately.  Her last login date is 4/13/2009 and the last time she posted was 9/13/2008.
 
-fruitgirl

Post Edited By Moderator (fruitgirl) : 3/6/2010 1:15:18 PM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/6/2010 6:47 PM (GMT -7)   

I also think if you want to stop Remicade you might want to have surgery be your next step if you can't remain in remission.  Going from Remicade to Humira is just another one of those "drugs" you say you don't want to pump in your system.  Before quitting I think you should think long and hard about what your next step would be.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 3/6/2010 7:20 PM (GMT -7)   
I agree with Sue. If you're going to stop Remicade, accept that surgery may be your only option if/when you flare up again. Humira doesn't work for everyone and none of these drugs seem to work forever.
 
I understand wanting to get off Remicade but if I were in your shoes, I probably wouldn't stop the treatments. I have had a pretty hard time getting into remission as it is so if something were working for me, I would stick with it. It is all a band-aid solution but like I said, until you're ready to seriously consider surgery, keep using the band-aid.
March 2007: Diagnosed with mild proctitis - Treated with Canasa (as needed)
August 08 - December 08: Relapse & Anemic - Treated with Asacol (9/day) + Canasa 2x/day
January 09 - December 09: Remission!! Canasa nightly + Asacol (9/day) + Probiotics + Iron
December 09 - January 10: Flare :(
Current: 10mg prednisone, 9 Asacol, Canasa

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