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03-08-2016, 01:32 AM   #271
Greeko
 
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My doctor is aware of the blood and I've been bleeding for the past 7 months while I was taking Entyvio ... It's due to the ulcers and strictures I have in my colon. I went to go see a surgeon 3 weeks ago he recommends I get stoma.... Ileostomy. My doctor and I decided I should go back on Stelara since I never really gave it a chance before. I'm hoping things will get better and I don't have to worry about the surgery for a while.
03-08-2016, 01:51 AM   #272
ronroush7
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I hope the Stelara does the job.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-28-2016, 05:11 PM   #273
jonique
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My doctor is aware of the blood and I've been bleeding for the past 7 months while I was taking Entyvio ... It's due to the ulcers and strictures I have in my colon. I went to go see a surgeon 3 weeks ago he recommends I get stoma.... Ileostomy. My doctor and I decided I should go back on Stelara since I never really gave it a chance before. I'm hoping things will get better and I don't have to worry about the surgery for a while.
Hi Greeko,

How are you doing on the Stelara? I am about to start it this week. I'm in Vancouver too

Jonique
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
03-28-2016, 05:17 PM   #274
ronroush7
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My doctor is aware of the blood and I've been bleeding for the past 7 months while I was taking Entyvio ... It's due to the ulcers and strictures I have in my colon. I went to go see a surgeon 3 weeks ago he recommends I get stoma.... Ileostomy. My doctor and I decided I should go back on Stelara since I never really gave it a chance before. I'm hoping things will get better and I don't have to worry about the surgery for a while.
Hi. Did your doctor check you for antibodies before starting you back on Stelara?

03-29-2016, 06:29 PM   #275
Greeko
 
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I didn't want to jinx it... that's why I didn't respond for the last 3 weeks. Things are going well for me the bleeding has completely stopped. After the initial loading dose ( 3 injections) in the 1st week I noticed the blood became pinkish and my bowel movements reduced from 20 to 30 x a day to 5 to 8 x a day in the 1st week. The 2nd week of loading dose ( 2 injections) I noticed no blood...and I could pass lots of gas without the fear of soiling myself. My bowel movements and pain were limited and urges for a bathroom were more controlled. In the 3rd week of my loading dose ( 2 injections )... I had days when I didn't need to go to the bathroom at all. I'm now waiting for my next dose which is on April 8th. This is the best I've felt in over 2 years. I did have two or three days that were somewhat bad but I'll take that than being sick everyday on the hour and not being able to do anything in life that's normal because of fear of not finding a toilet or the dreadful pain that makes you secluded from others.

I also changed some of my diet since starting on Stelara ive and take 1 digestive enzyme after every meal. One B12 pill and also take omega 3 the liquid type (1 teaspoon a day)

So far so good and hoping things continue for me.
03-29-2016, 06:40 PM   #276
ronroush7
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I hope the same

03-29-2016, 07:11 PM   #277
jonique
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I didn't want to jinx it... that's why I didn't respond for the last 3 weeks. Things are going well for me the bleeding has completely stopped. After the initial loading dose ( 3 injections) in the 1st week I noticed the blood became pinkish and my bowel movements reduced from 20 to 30 x a day to 5 to 8 x a day in the 1st week. The 2nd week of loading dose ( 2 injections) I noticed no blood...and I could pass lots of gas without the fear of soiling myself. My bowel movements and pain were limited and urges for a bathroom were more controlled. In the 3rd week of my loading dose ( 2 injections )... I had days when I didn't need to go to the bathroom at all. I'm now waiting for my next dose which is on April 8th. This is the best I've felt in over 2 years. I did have two or three days that were somewhat bad but I'll take that than being sick everyday on the hour and not being able to do anything in life that's normal because of fear of not finding a toilet or the dreadful pain that makes you secluded from others.

I also changed some of my diet since starting on Stelara ive and take 1 digestive enzyme after every meal. One B12 pill and also take omega 3 the liquid type (1 teaspoon a day)

So far so good and hoping things continue for me.
Sounds great! I'm glad you are feeling so much better.

04-13-2016, 09:28 PM   #278
rrhood1
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Well, got approved for Stelera - just came through yesterday. I have my first injection on the 25th. Hopefully it does something for this psoriasis and still keeps me in remission. Wish me luck!
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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
04-13-2016, 09:30 PM   #279
ronroush7
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Well, got approved for Stelera - just came through yesterday. I have my first injection on the 25th. Hopefully it does something for this psoriasis and still keeps me in remission. Wish me luck!
Best of luck

04-13-2016, 10:55 PM   #280
jonique
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Well, got approved for Stelera - just came through yesterday. I have my first injection on the 25th. Hopefully it does something for this psoriasis and still keeps me in remission. Wish me luck!
Great news rrhood1,

do you know what your dosage schedule is?

As I got my Stelara from my rheumatologist, she gave me the arthritis dosing so i had 45 mg the first week, then four weeks is the next 45 mg. After that it is every 12 weeks.

My Crohn's was already pretty good when i started it but i believe it is even better now. the problem i'm having is the the arthritis is flaring in my spine and got hit with fatigue. I suspect this is because the former drug (Cimzia) has now worn off completely and the Stelara has not kicked in all the way yet. I'm not too confident right now that the rheumatology dosing is going to cut it but I will have to wait and see.
04-14-2016, 12:04 AM   #281
rrhood1
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Don't know the dose yet - I do know that my injections will be like yours.
04-17-2016, 09:14 AM   #282
FrozenGirl
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Well, got approved for Stelera - just came through yesterday. I have my first injection on the 25th. Hopefully it does something for this psoriasis and still keeps me in remission. Wish me luck!
Congrats! I see you are in Alberta. Did you get it approved for psoriasis or Crohns? I don't think it is approved for Crohns here but I'm wondering if any insurance is allowing off label use yet.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
04-17-2016, 05:59 PM   #283
rrhood1
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No, I have Remicade induced psoriasis so my GI got me into a dermatologist who got me approved for Stelera. My GI has about 10 patients on it.
04-26-2016, 11:01 PM   #284
jonique
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After three weeks, I was in full arthritis flare up, but the Crohn's was still good. i ended pu taking the second loading dose at week 3 instead and things got better quite quickly. not sure what is going to happen with the next one.

Not sure if it is a coincidence or not but less than 24 hours after my last Stelara injection i got shingles! I'm starting acyclovir today and hope that it works fast as it is very painful!
04-26-2016, 11:41 PM   #285
ronroush7
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After three weeks, I was in full arthritis flare up, but the Crohn's was still good. i ended pu taking the second loading dose at week 3 instead and things got better quite quickly. not sure what is going to happen with the next one.

Not sure if it is a coincidence or not but less than 24 hours after my last Stelara injection i got shingles! I'm starting acyclovir today and hope that it works fast as it is very painful!
I hope the best for you.

04-26-2016, 11:50 PM   #286
aypues
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After three weeks, I was in full arthritis flare up, but the Crohn's was still good. i ended pu taking the second loading dose at week 3 instead and things got better quite quickly. not sure what is going to happen with the next one.

Not sure if it is a coincidence or not but less than 24 hours after my last Stelara injection i got shingles! I'm starting acyclovir today and hope that it works fast as it is very painful!
I just got Shingles and all I'm on is Entocort! And only 37, Hah! Luckily no pain. But it was a blessing in disguise because i'm set to start Humira/6mp shortly and it's better to have the Shingles before immunosupressant therapy. Hope yours clears up soon. I took Famvir and it went away in about 9 days.
04-27-2016, 12:26 AM   #287
FrozenGirl
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No, I have Remicade induced psoriasis so my GI got me into a dermatologist who got me approved for Stelera. My GI has about 10 patients on it.
Ah I see. I was hoping it had been approved for Crohns here but alas.
04-27-2016, 12:45 AM   #288
aypues
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It will be approved for Crohn's shortly.
04-27-2016, 07:45 PM   #289
FrozenGirl
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It will be approved for Crohn's shortly.
I'm in Canada. We got everything slower if we get it at all. Currently the only drugs approved for Crohns here (biologics) are Remicade and Humira. UC has Remicade, Entyvio and Simponi (sub Q version only) out of those only Remicade is covered by most drugs plans for UC and Remicade and Humira are both available on most drug plans for Crohns.
06-13-2016, 01:58 PM   #290
crappy
 
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I live in the Okanagan. Stelara is approved in Canada now and I started on it at the beginning of May. Did my 3 loading does and now waiting for my 8 week reg dose. Nothing changed yet but will have another MRI in 8 weeks to compare it to my pre Stelara MRI.

Will let you know if I feel any changes. By the way, Blue Cross covered me for 100 percent of the cost.
06-13-2016, 02:32 PM   #291
ronroush7
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I live in the Okanagan. Stelara is approved in Canada now and I started on it at the beginning of May. Did my 3 loading does and now waiting for my 8 week reg dose. Nothing changed yet but will have another MRI in 8 weeks to compare it to my pre Stelara MRI.

Will let you know if I feel any changes. By the way, Blue Cross covered me for 100 percent of the cost.
Hoping the best for you.
06-13-2016, 03:18 PM   #292
jonique
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I live in the Okanagan. Stelara is approved in Canada now and I started on it at the beginning of May. Did my 3 loading does and now waiting for my 8 week reg dose. Nothing changed yet but will have another MRI in 8 weeks to compare it to my pre Stelara MRI.

Will let you know if I feel any changes. By the way, Blue Cross covered me for 100 percent of the cost.
That is great. I'm in vancouver. I originally got the drug from my rheumatologist so the dosing is much different. Unfortunately my crohns started to flare up so my gi doc ordered a pill cam test and it showed narrowing and a crohns ulcer. I'm seeing my gi doc this Friday and will find out what he wants me to do about the stelara dosage.

So far sunlife has been paying for it but if it is now approved in Canada I may be able to get it from pharmacare if my gi orders it.

At the low dose I'm on my arthritis is not great and the crohns flared up. I hope a change in dosage and frequency will help.
Hoping the best for you.

07-20-2016, 12:14 PM   #293
rrhood1
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Well, I've had 2 shots of Stelara - May and June. Nothing much happened until yesterday when I realized I could make a fist. I haven't been able to do that for 2 years due to the psoriasis on my palms. It has almost totally cleared up and I haven't had any Crohns symptoms (other than the day to day joint pain). I don't see my GI until after November as we wanted to give the Stelara time to work.
Looks good so far!
07-20-2016, 12:15 PM   #294
ronroush7
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May it continue

07-21-2016, 11:11 PM   #295
jonique
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I saw my GI doc last month after the Pill cam got stuck and now he is sending me for a small bowel resection. he thinks that I will be feeling much better in the Crohn's department but it will not help the arthritis.

I had a reaction to the 90 mg of Stelara injection and it lasted three weeks! I had headache, nausea and fatigue. My rheumatologist recommends that i take Benadryl before the next injection and then every 8 hours for the next two days to hopefully avoid the same reaction next time. I'm going back down to 45 mg every 8 weeks.

I found out today that BC Pharmacare (my provincial medical plan) is covering the Stelara for one year because i have two conditions that need it and I have failed four anti-TNFs. This is great news!
07-21-2016, 11:31 PM   #296
ronroush7
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Super. Congratulations.

07-22-2016, 12:17 AM   #297
FrozenGirl
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I found out today that BC Pharmacare (my provincial medical plan) is covering the Stelara for one year because i have two conditions that need it and I have failed four anti-TNFs. This is great news!
Yay! This makes me hopeful Alberta will get with the times and cover it for Crohns and/or UC. Though geberally the approve very few meds for Crohns to be covered. Way more for things like RA.
08-02-2016, 09:36 PM   #298
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I will be seeing a GI researcher this month to be approved for Stelara. I've been on Remicade, Humira, Cimzia and Entyvio! Hoping Stelara will be better than them all!!
08-07-2016, 08:08 AM   #299
Clash
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Question about stelara.

We pushed to try Stelara as prescribed in the clinical trials.

The GI had to do a peer to peer review and appeal but insurance covered it.

Janssen patient assistance program for Stelara has so far denied to help because the dosing is higher than normal for Stelara.

When first dealing with the specialty pharmacy they were throwing out out of pocket expense numbers like $98,000 and on subsequent calls $68,000 for 4 90 mg shots (the loading doses i.e. 3 90 mg shots on day zero, 1 90mg shot on day 30). The maintenance dose will be 1 90mg shot every 8 weeks

In the end we paid $40 bucks for for shots without payt assistance and payt assist is on appeal.

I'm not worried about the $40 bucks I will gladly pay it.

My question is of those on stelara in US is your loading dose and maintenance schedule similar? Did you get quoted outrageous out of pocket expense amounts?

Also, we're you on other meds as well? My son takes mtx injections. It's for his CD but also for his SpA. He has been asymptomatic with his CD for a couple years but the disease is still active. During this time remicade failed, surgery was required then humira failed.

His blood work has never indicated active disease Orhan iron panels sometimes showing slight anemia. Inflammatory markers are always in the normal range.

Thanks for listening!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-04-2016, 05:54 PM   #300
agozal
 
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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.
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