Stelara

iots028

Congrats! And Welcome to the Stelara group.

We looked at Tysabri for Gus, but he already had antibodies that made him more susceptible to the PML risk...so that was a "no go" for us.

I hope Stelara will be successful for you!

Cheryl
 
I just asked about this drug on another thread, but luckily I found this one! My GI dr is going to prescribe it to me. He tested me for the JC virus, which was positive - I think I am more freaked out about that than starting a new drug. I don't really know what JCV is, so I researched it on the internet - I now realize it's probably the worst thing I could have done lol.
 
Basmah,

I hope the research showed that you, and about 50% of the population on the planet, have JCV antibodies! Did your doc test you for JCV for Stelara or for Tysabri? Our doc tested my son for Tysabri, because people who test positive for JCV antibodies are at higher risk of developing the PML (risk associated with Tysabri....incurable brain virus that leads to severe and permanent disability or death...words etched on my mind).

Keep us posted if you start Stelara!

Cheryl VT
 
I was getting tested for Tysbari, so I obviously won't be taking that lol. I did see that some sources say the 70-90% of the general population have it, but like you said, the way PML progresses is the part that is the most frightening. I am positive about it...after all, what if they never found the JCV antibodies in my system? Then I would be in a lot of trouble, so I am actually in a way thankful for the outcome. I am meeting with my doctor this Wednesday to talk about Stelara. Pray that it works for me!
 
Hi there,
Thank you all for sharing your stories. I has helped me a lot. I am 26 years old and I have had Crohns since I was 7. I have been on so many meds, that I dont even remember them all. Thankfully I have not had any surgeries. Most recently I was on and currently am still on Tysabri. I have been on it for about 2 years now. Prior to that I was taking Remicade (for 6 years), Humira (for 3 years) Methotrexate (for 3 years). I recently tested + for the JC virus associated with the Tysabri. I had never heard of Stelara being used for Crohn's until a patient of mine mentioned that he was in a study for it ( I work as a nurse). I spoke to my doctor about it and that day she got the +JCV results so I guess my next step is going to be Stelara. I am seeing a lot of good reviews from people, but I am still a little nervous about. What else is there is this doesnt work? It is very frustrating to have been on every single med, and they just stop working for you. Are the stelara shots painful? Any significant side effects from the shot?
Glad to hear all the success stories, hopefully this will be my path as well.
 
Hi Katie,
I am so sorry you have been suffering for so long. In my opinion, if you have already taken all of the others, why not try Stelara. I too am +JCV so I do not want to try Tysabri with the PML risk. I have also tried the meds you have listed above, but I am allergic to Remicade, Humira, mercaptopurine and thalidomide. I recently tried a study for Stelara, but it did not work for me. I was in the study from Dec 2012 - April 2013 and on the day I was to get my injection, the computer rejected me because it was not working. Have you tried Cimzia? If not, maybe you can give that a try. I was it for a few years, but it didnt seem to work well for me, but I did not have side effects which was great as I seem to get a lot of them. I also just spent 15 days in the hospital getting a Cyclosporine IV to see if that might help while we wait for another med for me to try. It is not specifically for Crohns, but we are hoping I might have some relief until we figure out what to do next. I had a small bowel ressection 4 yrs ago and they are talking about another one. If you can tolerate Humira, then I think you will be fine with the Stelara injections. (They did not bother me at all) My study was a double blind study. In Dec I received and IV. We were not sure if it was the real deal or a placebo. In Feb I received an IV treatment and a shot. One was the real deal, the other a placebo, so we know for sure I received Stelara in Feb. When I went back in April for my injection, the computer kicked me out. I can only assume I got the real deal in Dec, but I will never know. If you havent tried Cimzia or Stelara, but have tried the others, I say why not! They are no worse when it comes to side effects than what you have already taken. I wish you luck on your decision and hope this may help just a bit. Let me know if you have any questions. Take care of yourself :) Teresa
 
vtfamily said:
iots028

Congrats! And Welcome to the Stelara group.

We looked at Tysabri for Gus, but he already had antibodies that made him more susceptible to the PML risk...so that was a "no go" for us.

I hope Stelara will be successful for you!

Cheryl
Click to expand...

Hello!
My name is Jess, and my 12 year old son Michael has a severe case of Crohn's. I was very interested to see that you have a child near the same age who is on Stelara, because it is the next in his doctor's bag of tricks (they actually gave us the option of Tsyabri or Stelara, but the former scares the heck out of me!!). He had a good 2 years on Remicade but developed antibodies, and he has been trying Humira weekly for a few months and is developing the psoriasis-like rash and is still flaring up.

Can you please tell me about your experience giving Stelara to your child? We take our son to a large pediatric GI center (covers the entire pacific NW!), but his GI has only ever put once other child on Stelara!
Thank you!
 
I am hoping to be accepted into a clinical trial for Stelara. I will let you all know how everything turns out.
 
bubbabearzle said:
Hello!
My name is Jess, and my 12 year old son Michael has a severe case of Crohn's. I was very interested to see that you have a child near the same age who is on Stelara, because it is the next in his doctor's bag of tricks (they actually gave us the option of Tsyabri or Stelara, but the former scares the heck out of me!!). He had a good 2 years on Remicade but developed antibodies, and he has been trying Humira weekly for a few months and is developing the psoriasis-like rash and is still flaring up.

Can you please tell me about your experience giving Stelara to your child? We take our son to a large pediatric GI center (covers the entire pacific NW!), but his GI has only ever put once other child on Stelara!
Thank you!
Click to expand...

Bubbabearzle,

Hello to you! Glad you found us...and me, well my son and I! :hug:

Here's a quick summary of Gus' Crohn's, to help put things into perspective:
4 yrs old became a very picky eater (had not been until that point). Would say things like "I don't like dinner," not I don't like this food, but I don't like to eat at all. I think this is when he first began truly experiencing Crohn's symptoms. Unfortunately, we had no idea and just treated him like a picky 4 yr old.

By the time he was in Kindergarten, the Crohn's was taking a noticeable toll on his body. Began the process of figuring out what was going on.

6 yrs old, finally got past notions that constipation and acid reflux were the root cause. Ruled out things like Ceiliacs Disease and eventually was dx with Crohn's. Began treatment with 6MP, Pepcid, steroids, etc... We worked our way up the Crohn's medication staircase but nothing worked to manage pain and/or disease.

9 yrs old (and too many tests, scopes, scans later) we finally did a pill-cam study. Camera got stuck. Had to go in to remove it with surgery. THIS WAS A TRUE ANSWER TO PRAYER! Because they had to open Gus up, they finally saw why he was in soooo much pain. His intestines were so badly strictured, 18 inches of small bowel were removed. Gus started Remicade following the surgery. Remicade was WONDERFUL! It was the first drug that managed his pain and his disease. That lasted about 18 months.

11 yrs old had to move on from Remicade to Humira because, though his pain was still well managed, the disease was not. New strictures had formed, and in really a very difficult place (the duodenum). Doc tried to open the stricute with a balloon technique, but Gus ended up with a perforation and needed emergency surgery. (Note: We used the Humira in conjunction with Entocort and Mecaptapurine.)

12 yrs old, it was determined that the Humira was no longer effective after about 10 months and new strictures had formed at the terminal ileum. We gave serious consideration to Tysabri. Gus tested positive for the JCV, so it was a no go. That PML risk is insane!! So, we tried an anti-rejection drug for liver patients (Tacrolimus) for a few months. It did not work at all. Gus was in a tremendous amount of pain and was missing a lot of school. He started the Stelara a couple of months before his 13th birthday. The Doc also put a PICC line in to give Gus TPN to boost his nutrition and calories.

13 yrs old, Gus developed a bacterial infection a couple of weeks before he was scheduled to have the stricture at the terminal ileum removed. Spent 21 days in the hospital. Another 12 inches (of large bowel this time) were removed and he received his second dose of Stelara before going home.

Gus left the hospital and was feeling well enough to attend his 7th grade class field trip to Sea World. It was pure joy to watch him laugh and play with his friends in the pool (PICC line and all)! Gus caught-up on all of his school work and finished the year with his friends, on time! His PICC line was removed the day after school was out.

He has continued to take his Stelara injections regularly (45mg, every 2 months) and is doing really well. :dance: In fact, he is even trying out for the school's volleyball team (another indication of how good and how strong he feels)! He was so weak in the past couple of years that he was not able to participate in PE at all.

School begins again on Tuesday, Sept. 3rd...we are looking forward to (hoping for) a pain free, fully healthy 8th grade year!!! I don't know if I dare to even think about remission...but, Gus and I would really benefit from (at least) a year off from the Crohn's cycle!!!

All my best to you and your son.
Cheryl VT
 
Has anyone been on Stelara and methotrexate at the same time? My 17 year old daughter has had 2 doses of Stelara so far, her next dose is this Wed. She is feeling great, her blood results are good, ferritin level is climbling, still chasing thyroid numbers, but she has gained 8 lbs in the past 3 months which is great! The problem is her fecal calprotectin level has jumped from 945 to 1265 since starting Stelara. The only other change is that she is completely weaned from steroids (Thank Goodness!). GI does not want to repeat the FC...he says that if she is feeling well, no need to recheck (he doesn't believe it is always accurate in his experiences with other patients). Of course I am terrified of what is going on inside her gut and when the beast will strike! Liv is up at college, 5 hours away: I don't want her having a full blown flare and am wondering if adding metho will keep things in check until we get her home for the holidays and possibly scope or repeat MRI. Kim
 
Hi All,
It seems after 4 surgeries, fistulas and many drugs falures, including Humira, My gastro doc wants me on Stelara. Never heard of it before. Gonna knock down my current condition with a course of Prednisone then the plan is Stelara with MTX. I'm glad I found this thread. Hope it works. Thanks for the Info. I Hate crohns.
Gary
 
I have been accepted into a clinical trial and get my first dose in the morning. Hope it goes well. I need to feel some sort of relief soon.

Will you be in a clinical trial as well Gary? Stelara is not approved for Crohn's treatment yet in Canada. It's STUPID expensive too.

Shawn
 
bubbabearzle said:
Hello!
My name is Jess, and my 12 year old son Michael has a severe case of Crohn's. I was very interested to see that you have a child near the same age who is on Stelara, because it is the next in his doctor's bag of tricks (they actually gave us the option of Tsyabri or Stelara, but the former scares the heck out of me!!). He had a good 2 years on Remicade but developed antibodies, and he has been trying Humira weekly for a few months and is developing the psoriasis-like rash and is still flaring up.

Can you please tell me about your experience giving Stelara to your child? We take our son to a large pediatric GI center (covers the entire pacific NW!), but his GI has only ever put once other child on Stelara!
Thank you!
Click to expand...

Jess,

Just wondering how Michael is doing?? Did he start Stelara yet, or did you decide to go another route? I'd love to set it up so that Gus and Michael could talk and encourage one another.

Cheryl
 
ShawnP said:
I have been accepted into a clinical trial and get my first dose in the morning. Hope it goes well. I need to feel some sort of relief soon.

Will you be in a clinical trial as well Gary? Stelara is not approved for Crohn's treatment yet in Canada. It's STUPID expensive too.

Shawn
Click to expand...

Shawn,

I agree...Stelara is "stupid expensive." Although, when I picked-up Gus' first round of Humira injections the pharmacy wanted $5,000 for four pens. The girl behind the counter took pity on me and worked with the pharmacist to get it down to $1,250. I went back to talk to member services the next day and got it all straightened out. We pay $5 for a 30 day supply of meds. Since the packaging came in a 60 day supply and could not be separated, they charged us full price. Once real people got involved and saw that the problem was policy vs packaging, they placed a note in our file to only charge us $5 for the Humira pens.

Stelara has to be administered by the nurse in the office. So it has been a different kind of financial dance. It's not how much I pay, but which department is going to pay.

If Gus is in the hospital and a dose is due, our Ped. GI doc tries to get it administered in the hospital...then it comes out of the Peds Hospital budget. Otherwise, if the nurse picks it up from the pharmacy to administer in the office, it comes out of the Peds budget. If I pick it up from the pharmacy and walk it upstairs, I pay $15 (for name brand) and the balance comes out of the pharmacy budget.

I have to admit it is a little amusing watching the departments play "hot potato" with the Stelara delivery to see who is stuck with the bill. I'm just THANKFUL that it is not me. $5,000+ per injection, every eight weeks would bankrupt us.

Whether a trail or not, I hope you are able to keep the cost for the Stelara down to a reasonable number.

Best wishes.
Cheryl VT
 
I took my first injection of Stelara (off-label use) two days ago. I've been on pretty much every other approved major drug out there including some clinical trials. I have been on humira and remicade in the past.

There doesn't seem to be a lot of first-person info on this drug, so I joined to offer my thoughts on it's effectiveness in my case. Too soon to tell now, but I'll be back soon with an update.
 
1st Loading dose of Stelara last week. 2 more, then every 8 weeks.
I'm not sure if I'm on a clinical trial or what.
All I know is I'm not paying for it and I don't think John public taxpayer is either.
Thank God! As you say Shawn, "stupid expensive". My ethical concience bugs me sometimes to know that there are children starving to death somewhere in the world tonight. One injection of this stuff buys alot of rice. Am I worth it? I'll be a good patient and give it a go.
Hope it works.
 
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Just wanted to update. I've had 3 or 4 injections (multiple injections the first couple times) and it's not doing anything for me. Pillcam this week and scope next week, then talk with the doctor about the plan moving forward.
 
I have noticed an improvement since my first blast of Stelara. Pain has been reduced and the number of trips to the bathroom have been cut in half. Next blast of drugs is on Jan 13, and then a shot every 8 weeks after that. Crossed fingers that I continue to show improvement and can go into remission with the help of this drug. Side affects have been minimal, mostly just joint pain and achy back from time to time. I am cautiously optimistic at this point.......

Gary - good luck man.

Josh - How long have you been trying the Stelara? It took 20 weeks for a response in one person at the clinic I am going to....
 
SMully said:
I took my first injection of Stelara (off-label use) two days ago. I've been on pretty much every other approved major drug out there including some clinical trials. I have been on humira and remicade in the past.

There doesn't seem to be a lot of first-person info on this drug, so I joined to offer my thoughts on it's effectiveness in my case. Too soon to tell now, but I'll be back soon with an update.
Click to expand...

How are you feeling now?

Shawn
 
ShawnP said:
I have noticed an improvement since my first blast of Stelara. Pain has been reduced and the number of trips to the bathroom have been cut in half. Next blast of drugs is on Jan 13, and then a shot every 8 weeks after that. Crossed fingers that I continue to show improvement and can go into remission with the help of this drug. Side affects have been minimal, mostly just joint pain and achy back from time to time. I am cautiously optimistic at this point.......

Gary - good luck man.

Josh - How long have you been trying the Stelara? It took 20 weeks for a response in one person at the clinic I am going to....
Click to expand...

Based on my post here, I got my first dose on July 26, so 20.5 weeks ago.
 
Gus is six months out since his surgery and almost a year since starting his Stelara treatments. Nothing but GREAT news there! No missed school days, no major issues, no hospital days, no surgeries! This is the best six month period Gus has had in years!!!
 
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ShawnP said:
I have noticed an improvement since my first blast of Stelara. Pain has been reduced and the number of trips to the bathroom have been cut in half. Next blast of drugs is on Jan 13, and then a shot every 8 weeks after that. Crossed fingers that I continue to show improvement and can go into remission with the help of this drug. Side affects have been minimal, mostly just joint pain and achy back from time to time. I am cautiously optimistic at this point.......

Gary - good luck man.

Josh - How long have you been trying the Stelara? It took 20 weeks for a response in one person at the clinic I am going to....
Click to expand...

It has just been recommended by a specialist for me to switch from Remicade to Stelara. No word from my GI yet. I don't think he has received the report yet.

2
 
joshw2011 said:
Just wanted to update. I've had 3 or 4 injections (multiple injections the first couple times) and it's not doing anything for me. Pillcam this week and scope next week, then talk with the doctor about the plan moving forward.
Click to expand...

How did the pill cam go? Any better over the last month?
 
The pillcam has not been done yet. I have a lot of gas on my stomach tonight. It was uncomfortable earlier.

2
 
ronroush7, sorry to hear you're having trouble. Wish better way to deal with the gas. Hope you feel better soon.
 
Great news to share. Gus just passed the ONE YEAR mark on Stelara! He is feeling great and looking forward to a pain free 14th birthday!

Whoo-hoo!
Cheryl VT
 
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Linn said:
Pish-posh...neuro problems? I was on tysabri 3 years and felt amazing.....
Click to expand...

Linn, why did you stop taking Tysabri? I am trying to find something that will help me feel more normal and I'm thinking about this.

Thanks,
Jill
 
I had a resection in December of 2010 and had to wait 6 weeks instead of my usual 4 between Tysabri doses. When I finally did get my dose, I became resistant to it. I loved my time with Tysabri, it's the healthiest I've ever been.
 
Saw the GI today. Gus is still doing great on Stelara.

Doc had some interesting news...looks like Stelara for Crohn's has stalled. Instead, "Vido"," the Tysabri spin-off, is taking the lead. New direction is anti-adhesion drugs (Stelara, Tysabri, Vido), moving away from TNF blockers (Remicade, Humira).

Here's the best part...Vido does not carry the TB, lymphoma or PML/JK virus risks!!! It may even replace AZA and 6MP as treatment of choice.

Stelara is working for Gus, so we are sticking with it. It's good to know we have a viable alternative for the future.

Keep your ears open, this is exciting!
 
HI VTFAMILY,
Glad to hear Gus is doing well on Stelara.

I've been on Stelara a little more than 6 months now along with MTX. One injection every 8 weeks. I have noticed improvement and generally feel allot better. My energy level is also up. However at about 6 weeks after injection I feel noticeably worse and diarrhea comes back with a vengeance. After injection relief is usually within the next day or two. I will mention this to my specialist. Perhaps he will increase the frequency. Thanks for the news about vido. I've never heard of it before.
Gary
 
vtfamily said:
Saw the GI today. Gus is still doing great on Stelara.

Doc had some interesting news...looks like Stelara for Crohn's has stalled. Instead, "Vido"," the Tysabri spin-off, is taking the lead. New direction is anti-adhesion drugs (Stelara, Tysabri, Vido), moving away from TNF blockers (Remicade, Humira).

Here's the best part...Vido does not carry the TB, lymphoma or PML/JK virus risks!!! It may even replace AZA and 6MP as treatment of choice.

Stelara is working for Gus, so we are sticking with it. It's good to know we have a viable alternative for the future.

Keep your ears open, this is exciting!
Click to expand...

Hi, VTFamily. I am glad Gus is doing well on Stelara. I have only had one dose so far. They have my doses set at 0 week and then week 4 and then every 12 weeks. How long did it take to start making a difference with Gus??

2
 
ronroush7 said:
Hi, VTFamily. I am glad Gus is doing well on Stelara. I have only had one dose so far. They have my doses set at 0 week and then week 4 and then every 12 weeks. How long did it take to start making a difference with Gus??

2
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Gus is on an 8 week schedule @ 45mg. His improvement came quickly, I'd say by second or third dose (between week 4 and week 8).

Wishing you much success with it!
 
I am also very interested in hearing about people on Stelara, I will be starting it next week. I am crossing my fingers that it helps!!!
 
It does help me, but not enough that I can take it every other month. I just got lab results that my inflammation is still high, so I am going to start taking it every month. I am okay with that though, since it's only one injection (I had to do 2 w/ Humira and Cimzia). My health insurance is crummy, but I just signed up for the savings card - I am hoping it will make a big difference. :)
 
Hmmm thanks Basmah
I'm not sure how often I'll be doing it but I'm pretty sure once a month and more in the beginning, I'm taking prednisone right now just to avoid a rupture but it doesn't seem to be doing anything. Grrrr.
 
I hope it works out for you!! This disease is so lame...everything from food, drink, and meds are all trial and error. :ymad:
 
Thank you!!!! I will keep everyone posted on stelara results. It's complicated for me because I also have ms so humira and remicade are out. Was going to try tysabri but I am JCV positive. And yiu are correct this disease is lame! I've had it for 27 years. Craziness!
 
Hi everyone. Im new to this group and looking for people in stelara. I will be receiving my first injection next week and really hoping for improvement. Thank you all for sharing your stories. It seems that like every other drug everyone reacts very differently to it. I'm kinda freaked out about side effects etc but have no choice and need to give this a try!
 
Good luck Chocolatechick! I have been on since beginning of July and think it is working. No side effects that I am aware of. I am doing 90 mg injections and did three loading doses at 0,1,2 weeks and then every 8 weeks. Next dose will be mid-September.

Weaning off prednisone and still on Cipro for perianal disease, so hopefully will be able to get off both of those as well.

My insurance would not pay as it is not approved for Crohn's in Canada, so I am getting it through Janssen for now.
 
Hil lgpcarter!
Our stories sound very similar! Sounds like my dose will be the same as yours. I also live in Canada. Trying to get my extended health to cover it but if not I am covered under compassion care through the drug company. I am also weening off of prednisone the devil drug. At 25 mg a day and want to be done but heard it's dangerous to ween too fast. I also had 10 years of remission The only drug I've ever done for crohns besides prednisone is salofalk which I took for 20 years after bowel resection in 1991 I'm so happy to hear you think the stelara is working! My fingers are crossed. My biggest issue is I literally have NO TIME to get to a bathroom!
 
I "like" the side effects...no big deal...

STELARA® can make you more likely to get infections or make an infection that you have worse. People who have a genetic problem where the body does not make any of the proteins interleukin 12 (IL-12)Proteins that increase the growth and function of white blood cells, which are found in your immune system. and interleukin 23 (IL-23)Proteins that increase the growth and function of white blood cells, which are found in your immune system. are at a higher risk for certain serious infections that can spread throughout the body and cause death. It is not known if people who take STELARA® will get any of these infections because of the effects of STELARA® on these proteins.

Cancers
STELARA® may decrease the activity of your immune systemA system inside the body that protects against germs and infections. and increase your risk for certain types of cancer. Tell your doctor if you have ever had any type of cancer. Some people who had risk factors for skin cancer developed certain types of skin cancers while receiving STELARA®. Tell your doctor if you have any new skin growths.

Reversible posterior leukoencephalopathy syndrome (RPLS)
RPLS is a rare condition that affects the brain and can cause death. The cause of RPLS is not known. If RPLS is found early and treated, most people recover. Tell your doctor right away if you have any new or worsening medical problems including: headache, seizures,
confusion, and vision problems.
---

It´s nothing new to those who take humira and remicade I understand, but hopefully the SSI-treatment will be as effective with side effects like: red spot on injection site.

Scary shit that we take.
 
Scary shit, indeed. And I have probably become too cavalier about the side effects, but Stelara is my last chance before major surgery, likely a permanent ostomy, and I would like to avoid that for now, if possible.

I am really hoping for good results from the SSI trial. I had thought about participating, but went for Stelara instead.
 
raechel said:
Has anyone been on Stelara (ustekinumab) for their Crohn's Disease? The last time I traveled to see my Mayo Clinic GI she recommended Stelara as my next treatment option. My local GI has no experience with this drug, but is willing to try to get insurance approval if I push for it. It would be really helpful to hear from anyone else who has used this.

Thanks!
Raechel
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Raechel, I've been on Stelara for three years for treatment of psoriasis. It is a miracle drug because after the first six months psoriasis gone. I also have Crohn's and began to notice improvement with that as well. I found out that it was being considered for treatment of Crohn's so I've been killing two birds with one stone. But it is a very expensive drug. I'm on a maintenance dose of two shots a year. The manufacturer gives private insurance patients a big break but not medicare patients. I've been unable to take any of the other major drugs for Crohn's because of life-threatening reactions but since Stelara works differently my system has accepted it without any side effects whatsoever. I'm healthier now than I've ever been in years.
 
Hi there
I've just started stelara a month ago.

4 loading doses in 4 weeks, 90mg per 8 week after that.

I've failed remicade, i'm still on Methotrexate 25mg per week.

Best blood test result in a while. I think we've finally found something that is working for me! I'll see my gastro on Thursday.

I was wondering, long term speaking, did anyone has to get their injection more often? Like when I was on remicade at the end I had double dose (10mg/kg) every 4 weeks. I'm kind of worried this will happen with stelara too...

And it's not like if we have full of other option after this one...

Thanks
 
Leave it to Canada to provide Stelara for Crohn's Disease. Still not approved for CD in U.S. just psoriasis. Since I've had so many reactions to everything else I limit my Stelara shots to two a year rather than try for more then have a reaction that keeps me from using it at all. I was on remicade for five infusions before I had anaphylaxis and had to stop it and all the other biologics in that family. Can't take anything in the steroid family either so Stelara is it and I'm proceeding with caution. Actually I'm waiting till fecal transplant is approved for Crohn's and the delivery system is nothing more than a pill. That is the most exciting research and hope for anyone with IBD.
 
Thanks for the info David. I'm not in a position to take part in a trial but it is exciting news. I'm also excited about the prospect of fecal transplant being approved for all IBD including Crohn's and the delivery system becoming nothing more than taking a pill. It's looking like this may come to pass in the next couple years.
 
Stelara helped me , but my GI decided I should try Entyvio... big mistake I feel a lot worse now than I ever did almost comparable to when I was first ill and diagnosed 15 years ago.
 
Does Entyvio work in the same way as Stelara? Or is it more in the Embrel, Humira family of biologics. Do you know?
 
hopeemch said:
Thanks for the info David. I'm not in a position to take part in a trial but it is exciting news. I'm also excited about the prospect of fecal transplant being approved for all IBD including Crohn's and the delivery system becoming nothing more than taking a pill. It's looking like this may come to pass in the next couple years.
Click to expand...
I'm sorry to hear you're unable to. I hope you're able to get things under control soon!
 
Hi,
I haven't been on this thread in a while. Thought I would update...
Colonoscopy showed stelara wasn't working for me. My doc put me on Entyvio. I'm Not sure Entyvio's doin it for me either. Site Specific Immunomodulator (SSI) sound's promising. It's interesting that there's always something new coming out. Something's got to work. Eventually, Right?
Good luck to all those on stelara.
Gary
 
Back in 2006 I was on the Crohns clinical trial for CNTO 1275 which was the trial name for the Centacor company for Stelara. On the first four weeks I received 45 mg doses for 4 injections. By injection 3 my diarrheah stopped, bloating stopped and felt much better. Then the next 4 weeks no injections at all, then another round of 4 injections with the symptoms stopping again on this second round. All of this took place in a 3 month period. They were very excited about these results, I was the first person in California in this trial which was followed by more patients on this trial.

A few years later the Stelara brand name came out but only available for psoriasis. The competition with TNF drugs was fierce and Stelara remained as a psoriasis drug. I went on Humira for 4 years and it stopped working, I have been on Entyvio all of this year, I am on my 6 infusion and it is hardly working. Now my GI wants me to try Stelara as an off-label use but it requires special recommendations from a GI researcher that I will see soon. Then the struggle with insurance authorization will begin.

The effort in the clinical trial was extensive: there were weekly blood tests and monitoring of blood pressure, temperature and so on. They built a paper file on me that was 2 inches thick. There was special effort for any bad side effects that this big dosage may be causing(as you know maintenance Stelara injection is once every two months), and the monitoring of a success with Crohns.

Me, as well as you all, want to try Stelara after the other drugs have failed. The insurance company has other goals: they need to spend major amounts of money for each patient, they want to make sure that what they authorize has been tried by hundreds if not thousands of patients before and been successful. In my case with Humira they must have spent $80,000 and now with Entyvio they would have spent $30,000, and this cost is PER YEAR, just for me alone. The off-label use for Stelara is scattered throughout the country is hardly coordinated and the data gathered is diffused among the doctors.

What is needed for Stelara is a full clinical trial program for Crohns. After all these years of thousands of patients using TNF drugs and now Entyvio there is an emerging market of failures like me that need something new. The office I go to has 4 GIs, all together 15 patients on Entyvio, for 10 it is working, for 5 (like me) it is not. So there will be enough of "what is new to try" that will make Stelara a serious contender.
 
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Your experience with Stelara is so interesting. I was just so lucky that I did have advanced psoriasis and was prescribed Stelara then happened to notice what a positive effect it was having on my CD. My psoriasis is gone and it was covering about 90% of my body when I went on it in 2012. I have been on a maintenance dose of Stelara for the past 18 months or so and it still helps with my CD. I take the minimum dose because I am prone to anaphylaxis which has prevented me from using any of the other biologics like Humira and Embrel and any steroids. Stelara works differently which explains why I am able to tolerate it but I don't want to press my luck so take as little as possible. As you know Stelara is extremely expensive --$2800 co-pay per shot for Medicare or Medicare Advantage insured. Only $10 per shot for private insured. My dermatologist feels this is outrageous on the part of the manufacturer so he's been giving me my two shots maintenance dose a year for free. The manufacturer apparently has no problem giving out samples to doctors and my dermatologist is comfortable with doing this and knowing he is helping me kill two birds with one stone. Not too many physicians out there who care enough to go out of their way to help. I am so lucky. I pray every day that my luck will hold.
 
I am on Medicare United Health Plan. They have a catastrophic ceiling of $4500 per year which they covered for Entyvio which by the end of the year will be $30,000 to which I paid $4500 for the year. I am hoping that if I get approved that the same will apply for Stelara. However, the Crohns usage is off-label use, I wonder if the catastrophic plan still applies.

Stelara definitely worked for me back then, but it was 8 shots within 3 months which was a massive hammer to this pernicious disease.

We'll see !

http://www.everydayhealth.com/crohns-disease/can-off-label-drugs-help-in-crohns-disease.aspx

http://www.ccfa.org/news/stelara.html

http://www.reuters.com/article/2015/10/19/us-johnson-johnson-crohn-s-idUSKCN0SD1DS20151019

ibdnewstoday.com/2015/10/22/stelara-ustekinumab-for-moderate-to-severe-crohns-disease-demonstrates-significant-symptom-improvement-in-phase-iii-study-results/
 
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David said:
hopeemch, I suggest looking at the treatment option in my signature.
Click to expand...

David,

I'm a 41 year old woman with severe crohns and only 180 cm of bowel left. I am desperate for something to help get my crohns under control. I have had major reactions to all TNF's. Really don't want to have to try Stellara. Wondered what you meant by above quote because I couldn't see your signature line. Could you email me, as I am not usually on this forum. I need to get better so badly, I have five kids and a wonderful husband. Thank you for any help!!
 
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
 
vtfamily said:
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
Click to expand...
Same to hpu
 
vtfamily said:
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
Click to expand...

Hi Cheryl, I might be starting Stelara after many failed TNF. does it help with the arthritis?
 
Gus continues to thrive on Stelara. He never had a big problem with his joints, but has had NO complaints since being on Stelara...even with a lot of extra physical activity added to his routine.

Best Wishes,
Cheryl VT
 
I'm back on Stelara after spending 7 months on Entyvio... that drug did nothing for me.. and I feel it made me worse...anyways since being back on Stelara for 2 weeks ... I've noticed more control of my bowel movements. I'm now going 2 to 5 times compared to 20 to 30 times a day. My only issue right now is that I still see blood.
 
Greeko said:
I'm back on Stelara after spending 7 months on Entyvio... that drug did nothing for me.. and I feel it made me worse...anyways since being back on Stelara for 2 weeks ... I've noticed more control of my bowel movements. I'm now going 2 to 5 times compared to 20 to 30 times a day. My only issue right now is that I still see blood.
Click to expand...
If you haven't already, contact your doctor about the blood.
 
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.
 
Greeko said:
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.
Click to expand...

Hi Greeko,

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

Jonique
 
Greeko said:
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.
Click to expand...
Hi. Did your doctor check you for antibodies before starting you back on Stelara?
 
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.
 
Greeko said:
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.
Click to expand...
Sounds great! I'm glad you are feeling so much better.
 
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!
 
rrhood1 said:
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!
Click to expand...

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.
 
rrhood1 said:
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!
Click to expand...

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.
 
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!
 
jonique said:
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!
Click to expand...
I hope the best for you.
 
jonique said:
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!
Click to expand...

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.
 
aypues said:
It will be approved for Crohn's shortly.
Click to expand...

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.
 
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.
 
crappy said:
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.
Click to expand...

Hoping the best for you.
 
crappy said:
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.
Click to expand...
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.
ronroush7 said:
Hoping the best for you.
Click to expand...
 
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!
 
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!
 
jonique said:
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!
Click to expand...

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.
 
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!!
 
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!
 
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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