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10-07-2016, 10:27 PM   #301
rrhood1
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Well, my blood labs came back & I'm officially in a flare. GI is upping my Stelara to every 6 weeks now. Of course Alberta Health won't pay for it so the drug company is donating every 2nd dose.
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Alison

Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Sulfasalazine, Lyrica
Vitamin D, C, B, calcium
10-28-2016, 11:55 PM   #302
Napali Coast
 
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Hey guys, my name is ali and I live in turkey, since crohn is not common in here i have been visiting u.s every 3 year for medical treatment. i was using remicade for almost 8 years with not side effects and under remission, 4 years ago we doubled the dose and 3 years ago we highered it %25 more, so i was taking 12.5mg/kg until 2 months ago, which was my last dose. we found some antibodies on my blood against remicade and my doctor decided to start me on stelara 10 days ago.

I took my first stelara shot 3 days ago, 6 shots of 90mg which is equal 6mg/kg. I still have some reduced sweets and cramps during the day but it gave me a lot of energy and put me in a good mood again. My GI told me that the IV Stelara effects faster then the injection, so i should wait 1-2 weeks for stelara to kick in, since i used the injection type. Also my GI told me that Stelara works better with the patients who were successful with the Anti-TNF drugs. I am on pred also and reducing the dose every week, so i will be done with pred in a month and start Imuran for only 6 months, to help stelara work better.

I will keep you guys updated.

By the way Stelara costs 2.000 usd for 90mg shot in turkey, i paid a lot more less with some discounts for 6 shots.
Hi Ali, Thanks for the helpful info. How are you doing? Did the loading dose kick-in? I'm considering Stelara. Thank again.
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God Bless.
Napali Coast

CD: 1993
Current: Humira Induction August 2014 - Stopped due to reactions. Previous Remicade 400 mgs every 4 wks then 800 mgs every 4 wks - Built-up Antibodies in 2014

Events:
1993-Severe Blood Loss: Ileum-CD Diagnosis
1998-Sm Fissure-Nitroglcerin Cream
2007-Sm Bowel Blockage-No Surgery/NG Resolved
2013-Severe Blood Loss: Stomach-NSAID Caused
2013-Remicade-Clinical Remission

Current RX:
Prednisone Daily
Meloxicam Daily
B-12 2xMo. Injection
11-02-2016, 08:40 PM   #303
Napali Coast
 
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Has anyone started Stelara since the FDA approval or prior? I am days away from starting the initial infusion. Built up antibodies to Remicade and then started to have reactions to Humira. Transient joint pain is off the charts....
11-21-2016, 09:33 AM   #304
eleanor_rigby
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Does anyone know what the mucosal healing rates are for stelera? Not sure how it fares to remicade etc?
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2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
12-28-2016, 05:10 PM   #305
agozal
 
Join Date: Jul 2013
Location: Istanbul, Turkey
Hi Ali, Thanks for the helpful info. How are you doing? Did the loading dose kick-in? I'm considering Stelara. Thank again.
So far so good. I was better few weeks ago, my bowel movements raised up a little bit last week, but still i do feel better then before.

Had the best CRP results since 10 years. It was lower then 0.50.

After my loading dose I will take my second shot this week, hopefully things will get better.

By the way it took 4-5 weeks for stelara to kick in, especially it did get better when i also added Imuran at the 4th week.
01-04-2017, 08:48 AM   #306
cbueno
 
Join Date: Jan 2017
Location: Los Angeles, California
Hello,

I was diagnosed with Crohn's disease in June of 2015, and was put on Remicade with only a bit of predisione until I went into full remission. I also have severe psoriasis and the Remicade is not working for the skin issues. I'm having another colonoscopy done to see how I'm doing, and then we will decide if Stelara is the right move.

Has anyone experienced transitioning medications? If so, how is the transition process? Yes I know everyone is different but I am terrified to get off the Remicade because I am currently getting it every 8 weeks, but by week 6 I am already suffering.

Please feel free to share your experiences! Thanks!

-C
01-12-2017, 09:45 PM   #307
Napali Coast
 
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Hello All, (RE: STELARA and NEW DRUG NAMED VIVLODEX)

For those of you who are still dealing with significant joint pain, I highly recommend Vivlodex Capsules. I am currently on the 5 mg daily dose and am amazed how well it works. This drug is the capsule form of Meloxicam (Anti Inflammatory),however, the drug has a 'high tech' release which is specific to Vivlodex solely. For me, it works far better than Prednisone and generic Meloxicam. It was initially given to me by my MD Internist as a 'sample' and within 2-3 the drug had taken away my pain. Based on the cost, (it now has a manufacturer coupon card that works with your own insurance, thus, greatly reducing the cost to a co-pay), I tried generic Meloxicam 15mg, along with Prednisone, however, it only worked for about a few days. When I returned to the Vivlodex 5mg capsule (stopping the Prednisone and Generic Meloxicam), my pain subsided in less than 2 days. My doctor tells me that the Vivlodex has a high tech delivery system. Sadly, many doctors including my GI doctor was not aware of this drug.

In closing, I have started Stelara and have received my initial induction 360 mg IV infusion. Accordingly, I will administer my first 90mg injection in less than 3 weeks. To date, the Stelara has not had the immediate relief Remicade gave me when I first initiated it back in 2013. Sadly, I built-up antibodies to Remicade and later reacted to Humira.

As you may know, Stelara attacks specifically IL 12 and IL 23 - and I pray this newly FDA approved drug kicks-in and ultimately changes many of our lives for the better.
02-04-2017, 02:39 AM   #308
cldb
 
Join Date: Feb 2017
Location: Netherlands
I received my first Stelara infusion on 10 January. Scheduled to receive the second (injection) in March. I didn't notice any improvement, when did you see some resuluts?
02-04-2017, 01:45 PM   #309
rrhood1
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Vivlodex is a NSAID - my GI won't let me take NSAIDs.
02-04-2017, 02:36 PM   #310
ronroush7
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Vivlodex is a NSAID - my GI won't let me take NSAIDs.
Any drug like this can cause bleeding.
02-04-2017, 03:43 PM   #311
Napali Coast
 
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Any drug like this can cause bleeding.
Yes... We all know this... all too well - I too have had my share of blood loss throughout the years. However, the Vivlodex 5 mg works better than Prednisone for me when I am having severe migratory arthritic pain. Thus, I needed to pull that trigger - and its been very helpful!

The Vivlodex has a different delivery system thus, reducing the NSAID bleeding issue in the majority of its users.

I have had my initial dose infusion (noted above) of Stelara and just administered my 90mg maintenance dose... To date, the Stelara has not helped like the Remicade did 'right out of the gate'. However, to date, between the Stelara and Vivlodex I am holding steady and waiting for a good outcome.

I am hoping your Stelara treatments are doing well for both of you.
03-10-2017, 05:37 PM   #312
agozal
 
Join Date: Jul 2013
Location: Istanbul, Turkey
Just an update:
After the loading dose i had my third 90mg dose last week.
It works amazing with Imuran. I am taking 100mg Imuran everyday.
still feeling good, no problems yet.
03-11-2017, 02:22 PM   #313
ronroush7
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That is great.
03-14-2017, 11:19 PM   #314
becls
 
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I am starting Stelara, hopefully this week I will get the infusions. Can anyone tell me if you had any ill feelings immediately after the infusion or the next day. I was on Remicade years ago and got very nauseated during and after the infusion and was very tired the next day. I am hoping Stelara is as good as everyone is reporting it to be as I am have ran out of medicines to treat my Crohn's. Any info will be appreciated.
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Diagnosed January 14, 2011
Small bowel resection in April 2011
Entocort
Pentasa
Vit. B12 Injections
Zofran as needed
Have been on:
Remicade
Methotrexate
Humira (weekly)
6mp
03-15-2017, 08:23 AM   #315
ronroush7
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I was on Stelara a couple of years ago and don't remember any sick feelings. I wish you the best.

03-20-2017, 04:07 AM   #316
Turftech
 
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I just started Stelera a couple weeks ago and I haven't felt anything. I went to a new GI recently who communicates a little better then my other and he said that meds just don't seem to work for me and surgery is looking like the choice. Not even prednisone as I'm on 60mg now and it's not doing much.

Anyway, I've been in a pretty bad flare as of late but.. and I dont want to jinx it, but... my frequency and urgency has just slightly subsided over the last two days. I didn't even have to get up in the night which doesn't happen.

Anyway, hopefully it's the Stelera.

But no ill feelings from it, no.
__________________
Crohns Colitis
Recently scoped with mod to severe throughout colon.
Tried a bunch of drugs to no avail.
Currently on Remicade and methotrexate but not really working.
Large joint issues due to Crohns
Daily dump of water 5X/day
Often just feel like hell and have no motivation for anything.
I love being a dad more than anything. Crohns limits my ability to do so, which frustrates me to no end.
03-20-2017, 05:02 AM   #317
becls
 
Join Date: Dec 2011
Location: El Campo, Texas

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Thanks for the response Turftech. I know when I was on Remicade I had a little reaction so I was not sure if it was the same.
Although it may be for nothing now because Blue Cross Blue Shield of Texas, my health insurance, has denied the Stelara saying it is not approved for my diagnosis, Crohn's. So now a battle of getting approval. This is another thing that is frustrating. I have to prove that I have exhausted ALL other medications and that none of them were effective and prove that I am "sick enough" to be on Stelara according to Blue Cross Blue Shield and then they deny because they say it is not approved for Crohn's. Someone at BCBS is about 6 months behind. Sorry folks had to rant a little. Living on steroids right now to keep from flaring and can't reduce even by 10 mg or I flare again. Thankfully my doctor is not giving up and are trying to fight with BCBS to get a "medically necessary" approval, I guess that's because I would just want to take it just because, not because it is medically necessary. insurance companies, ugh!!
03-21-2017, 02:43 PM   #318
agozal
 
Join Date: Jul 2013
Location: Istanbul, Turkey
I just started Stelera a couple weeks ago and I haven't felt anything. I went to a new GI recently who communicates a little better then my other and he said that meds just don't seem to work for me and surgery is looking like the choice. Not even prednisone as I'm on 60mg now and it's not doing much.

Anyway, I've been in a pretty bad flare as of late but.. and I dont want to jinx it, but... my frequency and urgency has just slightly subsided over the last two days. I didn't even have to get up in the night which doesn't happen.

Anyway, hopefully it's the Stelera.

But no ill feelings from it, no.

You may ask your GI for imuran. It took 4-5 weeks for stelara to kick in to my system, but once i added the imuran at the 4th week i felt immediate response in a few days. They work together pretty good. Hopefully you will be fine also.
My plan is to use imuran for the first 6-8 months. Then i will decrease the dose every other month.
03-22-2017, 05:12 AM   #319
becls
 
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Thanks Agozal, I will have to ask my doctor about that one. I have not been on imuran. I just hate that insurance companies play such a large part in our medical treatment and that pharmaceuticals are so expensive.
04-11-2017, 08:37 PM   #320
rrhood1
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I've stopped taking Stelara now and my flare continues. However they started me on Otezla for the psoriasis which has almost immediately cleared it up. I've noticed something else though, all of a sudden, the joint pain I've been experiencing for years is just about gone. Since Otezla is used to treat psoriatic arthritis, I begin to wonder if the pain that everyone attributed to Crohns wasn't psoriatic arthritis after all. I will have to pursue this with my rheumatologist.

Hopefully I can re-start Remicade now that the psoriasis is cleared up.
04-11-2017, 08:38 PM   #321
ronroush7
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I've stopped taking Stelara now and my flare continues. However they started me on Otezla for the psoriasis which has almost immediately cleared it up. I've noticed something else though, all of a sudden, the joint pain I've been experiencing for years is just about gone. Since Otezla is used to treat psoriatic arthritis, I begin to wonder if the pain that everyone attributed to Crohns wasn't psoriatic arthritis after all. I will have to pursue this with my rheumatologist.

Hopefully I can re-start Remicade now that the psoriasis is cleared up.
I hope good things for you.

04-14-2017, 06:34 PM   #322
kimmidwife
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We just joined the Stelara club today. My daughter did the IV loading dose.this is the last drug for us as she has tried everything else and has been allergic to everything except Entyvio which worked ok until she developed severe migraines and we had to stop it in December.
My question is a few people mention taking it with imuran. If you are taking both how can you really say it is the Stelara working and not the imuran?
Anyway imuran is not an option for us as she had a very severe allergic reaction to it when first diagnosed.
For those only on Stelara when did you see improvement?
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
06-01-2017, 06:02 AM   #323
darubo
 
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Location: Lufkin, Texas

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Hello,
I'm about to start Stelara, & I too had a severe allergic reaction to Imuran; had to be hospitalized & felt like I was dying.
I'm worried since I'm allergic to Imuran that I might not be able to tolerate Stelara.
Where is your daughter on Stelara treatment now, if you don't mind me asking?
I hope she'feeling better, & thank you for your post & reply.

Dana B in TX
06-01-2017, 08:23 AM   #324
ronroush7
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Hello,
I'm about to start Stelara, & I too had a severe allergic reaction to Imuran; had to be hospitalized & felt like I was dying.
I'm worried since I'm allergic to Imuran that I might not be able to tolerate Stelara.
Where is your daughter on Stelara treatment now, if you don't mind me asking?
I hope she'feeling better, & thank you for your post & reply.

Dana B in TX
I wish you the best.
06-06-2017, 03:31 PM   #325
Dude007
 
Join Date: Jun 2017
Location: Thousand Oaks, California
Hi, I am new here. My daughter is starting Stelara on Monday. She failed Remicade and Humira as she developed Antibodies in both cases by the 4th infusion/injection. Hoping the same does not happen with Stelara...
06-06-2017, 04:29 PM   #326
ronroush7
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Hi, I am new here. My daughter is starting Stelara on Monday. She failed Remicade and Humira as she developed Antibodies in both cases by the 4th infusion/injection. Hoping the same does not happen with Stelara...
Hi. I hope the Stelara works for your daughter. Tagging Clash, Maya 142 and my little penguin.

06-08-2017, 10:31 PM   #327
kimmidwife
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We are seven weeks out from the initial infusion and my daughter is not doing well at all. Did everyone's doctor wait 8 weeks between loading dose and the next dose? It just seems like such a long time in between.
Dude007,
My daughter is allergic to remicade, Humira, and cimzia, I was very worried about the possibility of an allergy to Stelara. No issues but we premedicate with Benadryl.
Darubo,
I am not sure what happened I replied to,you last week but the reply disappeared. My daughter has done the loading dose only so far. She is now only on the Stelara and methotrexate. She has weaned off prednisone and budesonide.
She is not doing great. She is also on EEN and continues to have stomach pain and bloody stools started up again last week. I have had a call into the doctor but he is on vacation and we have not gotten a call back from his covering doctor.
06-08-2017, 10:36 PM   #328
Maya142
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I would guess Stelara could be moved up, it just might be a fight with the insurance company. We have done higher than normal doses for many biologics - Humira, Simponi and Remicade.

We were told Stelara takes a long time to kick in - it can take more than 6 months according to our GI.

Hang in there!! Hope you get a call back soon.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-09-2017, 08:09 AM   #329
Tuff
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Mine seems to have kicked in. I had my last Remicade infusion in March, and got peripheral neuropathy. In April I was put on Prednisone because I was flaring. Now down to 5 mg a day, almost done. I had my first Stelara infusion three weeks ago. I was slightly constipated yesterday, which hasn't happened since I was diagnosed in 2011. Haven't gone yet today. I don't think it's the prednisone, it stopped my flare, but it's never worked "that" well. I'm not having any Crohn's symptoms. I'm generally very sensitive to drugs. So far I've experienced some mild headaches, which are unusual for me.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
06-11-2017, 02:30 PM   #330
kimmidwife
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Second Stelara done. Fingers crossed!!!
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