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Stelara
- Thread starter raechel
- Start date
Just received all of the paperwork to possibly participate in the Ustekinumab study. I have to say I enjoyed reading everyone's comments. I will let you know what i decide. Thanks 
I will have all of my testing on Dec 4th to see if I am OK to get started on Stelara or placebo on Dec 19th. My chances are 2 out of 3 get Stelara. I am allergic to Remicade, Humira, 6MP. I have also failed at Cimzia, MTX, Thalidomide, etc... I just found out I tested positive for the JC Virus, so Tysabri is out for me. The Stelara research and Tysabri are my last 2 choices available at this time. So I am giving it a try. I am down to 20mg of pred and HATE it!! I have not had a descent nights sleep since they put me on it a couple months ago. The headaches, muscle cramps (nightly), blurred vision, weight gain, dizziness, bloating, bloody stools, moodiness, etc are making me crazy. I just started posting on here recently trying to get the scoop on everyone's comments on Stelara. I have to say I should do it more often...I like reading about everyone's experiences. It seems to help knowing other people are going through the same stuff!! Thanks a bunch!!
to cupcake: How did your infusion go? Do you think you got the meds or the placebo? I hope it all went well
My doctor has decided to take me off of the Stelara, after a recent hospitalization due to an extreme headache, throwing up from as little as licking a popsicle, and having random red itchy bumps/welts on throughout my body. Especially since the headache and itchy bumps have been sporadically happening pretty well since I started the injections, his best guess is that the Stelara is at the root of it. I have also been noticing a lot of vertigo, heart palpitations, and SOB with the slightest activity (for instance walking from my chair to the bathroom). The bummer is I was noticing some improvement in the Crohn's...especially that the abscesses had stayed away. Big picture wise though, I really think the bad was outweighing the good for me... I hope I am not really regretting going off of it in a few months. At least I have my pre-transplant testing and re-evaluation scheduled for a stem cell transplant at the end of January.
I wish you all the best of luck and hope that the side effects/allergic reactions/whatever you want to label it that I have had to Stelara are not common, or experienced by any of you. Good luck everyone!
I wish you all the best of luck and hope that the side effects/allergic reactions/whatever you want to label it that I have had to Stelara are not common, or experienced by any of you. Good luck everyone!
David
Co-Founder
- Location
- Naples, Florida
That's too bad raechel I was really hoping it'd do the trick for you. So stem cell transplant is next?
I was really hoping it'd do the trick for you. So stem cell transplant is next?Thanks, David... it would have been awesome if it worked out.
Yep, stem cell transplant here I come! I went to Chicago last December for evaluation and qualified for the transplant then, but couldn't get it approved by insurance, so I decided to try Stelara. Luckily, in January I will be eligible for Medicare for having been medically disabled for 2 years, and they are expected to cover a large portion of it. For the remaining portion we have been fundraising for about 5 months and have enough money to at least cover the up-front costs. I already have an appointment for the last week of January for my pretransplant testing (and re-qualification since it has been a year). If all of that goes according to plan, on Valentines Day my brother will have his stem cells harvested and soon after that the process will begin.
Yep, stem cell transplant here I come! I went to Chicago last December for evaluation and qualified for the transplant then, but couldn't get it approved by insurance, so I decided to try Stelara. Luckily, in January I will be eligible for Medicare for having been medically disabled for 2 years, and they are expected to cover a large portion of it. For the remaining portion we have been fundraising for about 5 months and have enough money to at least cover the up-front costs. I already have an appointment for the last week of January for my pretransplant testing (and re-qualification since it has been a year). If all of that goes according to plan, on Valentines Day my brother will have his stem cells harvested and soon after that the process will begin.
David
Co-Founder
- Location
- Naples, Florida
I hope all goes well! When the time comes, please create a thread about it (if you're comfortable doing so of course) so we can support you and learn.
I am finally starting to feel a bit better. I don't feel like I saw an immediate miracle (which is how I felt with Humira years ago) but I have seen significant progress and I haven't been having hardly any of my esophageal issues which plaque me more than any other symptom.to cupcake: How did your infusion go? Do you think you got the meds or the placebo? I hope it all went well
I had a quick exam under anesthesia to go over the perianal fistula I was having issues with, and it showed two new fistulas which were most likely developed when not on any medication other than prendisone for a matter of months. I had a new seton put in and it has been going quite well so far, and I feel as if there has healing since beginning the stelara!
Oddly enough, I haven't seen a reduction in my psoriasis.
Hi all, I am now in week 18 of Stelara/Ustekinumab trial in Cambridge. I cannot speak highly enough of how great i feel on this treatment. Being classed as a severe crohns sufferer, I qualified for the trial about 8 months after being diagnosed. I now go back four weekly for injection, and have seen complete remission. If anyone required any advise on the trial, i would love to be able to help someone else. So far, I feel fantastic (aside from tiredness we all suffer)
David
Co-Founder
- Location
- Naples, Florida
Welcome Stephienc! I'm so pleased to hear that the Stelara is working well for you. That's fantastic I hope it leads to a LONG remission.
I hope it leads to a LONG remission.Since I am using Ustekinumab my colon went from severely inflamed to fully healed. I am also following the SCDiet though, and I am on a low dose of Prednisone.
Btw Stephienc, are you also enrolled in the phase 3 trial of Ustekinumab? I am, and I get an injection every 8 weeks; you mentioned that you get one every 4 weeks?
Btw Stephienc, are you also enrolled in the phase 3 trial of Ustekinumab? I am, and I get an injection every 8 weeks; you mentioned that you get one every 4 weeks?
I've tried Remicade and Humira. I've even tried Pig Whipworms. I currently have an Ileostomy. Options at this time are Tysabri, Stelara, and a bone-marrow transplant with chemo to restart the immune system. I feel like both Tysabri and Stelara will be like Humira and Remicade.
David
Co-Founder
- Location
- Naples, Florida
Stephen, have you heard of Low Dose Naltrexone?
David - I have never heard of Low Dose Naltrexone. I will look into it and ask my GI about it, thank you.
Tenacity - It is a trial in Philadelphia at the moment, it moves around to different universities for people ages 18-25 with moderate to severe Crohn's Disease. I don't remember all the details but I'm pretty sure it is an autogulous transplant. The ileostomy is indeed reversible, that was the plan when the procedure was originally done last August.
Lawyerboy - Thank you. I hope Stelara or Tysabri work.
Tenacity - It is a trial in Philadelphia at the moment, it moves around to different universities for people ages 18-25 with moderate to severe Crohn's Disease. I don't remember all the details but I'm pretty sure it is an autogulous transplant. The ileostomy is indeed reversible, that was the plan when the procedure was originally done last August.
Lawyerboy - Thank you. I hope Stelara or Tysabri work.
Stephen - Stelara seems to be a good choice and then you will have the sct to back you up. Not sure if you know, but we have an extensive discussion with past patients blogs in our treatment section about stem cell transplants. Lots of great information there.
Let us know if we can help you with anything. Are you on any particular diet?
Let us know if we can help you with anything. Are you on any particular diet?
Tenacity - Thanks for the information, I'll check out the treatment section. I'm currently on no particular diet.
Got my approval from insurance and waiting for the drug now from Medco (and to find out how much of the cost my insurance will cover).
Just been on Imuran since August. Was not sick enough for the trial, so they sought approval for off label use and got it.
Hoping this works, have failed Remicade, Humira/Methotrxate, and Cimzia and had most of my colon removed earlier this year. Right now I actually feel pretty good, or at least good for me.
They are doing 90mg, then 90mg 2 weeks later, and then 90mg every 8 weeks in a shot I do myself.
Just been on Imuran since August. Was not sick enough for the trial, so they sought approval for off label use and got it.
Hoping this works, have failed Remicade, Humira/Methotrxate, and Cimzia and had most of my colon removed earlier this year. Right now I actually feel pretty good, or at least good for me.
They are doing 90mg, then 90mg 2 weeks later, and then 90mg every 8 weeks in a shot I do myself.
Looks like this is my next try.......IF......my Doc can get it approved with my insurance.
Other than this, surgery seems to be my only option, which in my mind is NOT an option.
It's unfotunate that it's not even going to hit the FDA's desk till next year (2014) to get possible approval for Crohn's.
For now we get a sub-par theraputic dose off label IF our stingy ass insurance co. will allow it.
Other than this, surgery seems to be my only option, which in my mind is NOT an option.
It's unfotunate that it's not even going to hit the FDA's desk till next year (2014) to get possible approval for Crohn's.
For now we get a sub-par theraputic dose off label IF our stingy ass insurance co. will allow it.
Hi everyone, just wanted to update on how i'm doing.
We have finally found a dose that might be helping me for real.
I have been using 45 mg q2weeks and now I'm down to 3mg of prednisone. I can eat most foods (with the exception of very very high fiber stuff) and haven't seen blood in weeks.
I think finding the pharmacokinetically favorable dose takes time, but is well worth the work. I feel better than I have in ages.
Best of luck to all those Stelara-users out there---try tinkering with your dose if you feel that its helping you--that can make all the difference!
We have finally found a dose that might be helping me for real.
I have been using 45 mg q2weeks and now I'm down to 3mg of prednisone. I can eat most foods (with the exception of very very high fiber stuff) and haven't seen blood in weeks.
I think finding the pharmacokinetically favorable dose takes time, but is well worth the work. I feel better than I have in ages.
Best of luck to all those Stelara-users out there---try tinkering with your dose if you feel that its helping you--that can make all the difference!
Good to hear this! I have had a reversible ileostomy since July and am about to do my 2nd tysabri infusion. Stelara would be my next option if the Tysabri fails. Just curious, do/did you have any fistulas? My problem is with abscesses and a fistula tract near my rectum...
Hi all,
Im starting Stelara tomorrow! I have so far ''failed'' all other biologics, most recently Cimzia. I was just browsing through the previous posts and it seems my doseage is way off what everyone else is getting. I start with 90mg tomorrow, then 45mg weekly for three weeks, then 45mg fortnightly from then on, all going well. Does this seem ok? Stelara is not being used widely here in Ireland, my GI knows of only three patients on it all at a different hospital so Im a bit of a guinea pig! Just want to be sure Im getting the best start!!
Also, anybody thats taking it with Methotrexate, have you been able to stop the Mtx at any point as thats my main goal. Im currently taking 25mg/wk.
Im starting Stelara tomorrow! I have so far ''failed'' all other biologics, most recently Cimzia. I was just browsing through the previous posts and it seems my doseage is way off what everyone else is getting. I start with 90mg tomorrow, then 45mg weekly for three weeks, then 45mg fortnightly from then on, all going well. Does this seem ok? Stelara is not being used widely here in Ireland, my GI knows of only three patients on it all at a different hospital so Im a bit of a guinea pig! Just want to be sure Im getting the best start!!
Also, anybody thats taking it with Methotrexate, have you been able to stop the Mtx at any point as thats my main goal. Im currently taking 25mg/wk.
The reason for non-approval is probably because this drug is non FDA approved for the treatment of Crohns Disease.
It's studies like the one you are on (Stephienc) are what the rest of us need to get the FDA approval..........considering it does help.
My doctor just recently got a patient approved for off-label use. He is going to try the same with me and hopefully it goes through AND it works for me.
I will update with any new info I get and see if I can find out the verbage he used IF successfull.
It's studies like the one you are on (Stephienc) are what the rest of us need to get the FDA approval..........considering it does help.
My doctor just recently got a patient approved for off-label use. He is going to try the same with me and hopefully it goes through AND it works for me.
I will update with any new info I get and see if I can find out the verbage he used IF successfull.
No trial or study. My doctor got me approved for off-label use.
Just started part 2 of the Stelara study last night. In Dec I had my first infusion of possible med or placebo. We hope it was the placebo as I have had no change at all. Last night I received an infusion and an injection. One of which is the real deal, the other a placebo. Today I feel like I have a cold starting (runny nose, itch watery eyes, etc)...anyone else notice they felt like that after receiving the meds? I hope this works as I have mentioned before, this is one of my last options. I have not responded or I am allergic to 6MP, Remicade, Humira, Thalidomide, Methotrexate, prednisone, Asacol HD, pentasa, Cimzia. I tested positive for JC Virus, so Tysabri is out! I had a small bowel resection in July 2009 and we have already talked of another one. I am hoping I have as much luck as some of you on the Stelara. I will go back in 4 weeks for the injection and if it helps, will continue every 4 weeks Happy Valentine's day everyone
Happy Valentine's day everyone
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I loved reading this post. I just had my first shot of stelara yesterday. I did get the headache and felt nauseaous for a little bit but it all did go away. I am the first patient at my GI's office to try stelara. I'm really hopeful that it will help but I'm also on presidsone which I've started to taper off from 35mg. I've tried remicade but after I had my daughter I had an allergic reaction. I then tried cimzia and humira as well as being on imuran and still didn't work for me. My GI finally sent me to the mayo clinic In MN where the GI dr suggested tysabri but I tested positive for the JC anti virus and couldn't take it so my next step was stelara. After going through all that I truly hope it does work for me becuase I would love to try for another child but this disease makes that so much more complicated!!
I'm hopefully starting this soon and I had just one question, just something I'm curious about, not that it matters at all. Is the pain less than Humira, for those who have done both? From what I read in here I didn't see anything about it being painful, so that looks positive. It wasn't a big deal for Humira, just a nuisance at the time, but like I said it's just something I've been wondering about for a while now haha
I understand what you mean Josh..I didnt thinkHumira was bad, but I did think that Cimzia burnt as it entered. I received Stelara on Feb 13th, but I do not know if it was in the syringe or the infusion (one of them was a placebo). I go next week for the injection, I will let you know my opinion Good luck!
Good luck!
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I did Humira in the upper thighs and Cimzia in my stomach. I would probably prefer stomach and thighs over upper arms
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I did Humira in my thighs and it did sting but the Sterlara didnt sting at all which I did in my stomach. However I ended up getting worse a couple days after getting my Sterlara injection on Feb 22nd. So they increased my steriods (uurgghhh) and I'm suppose to go today for my next Sterlara shot but not sure what my GI is going to do....
and I'm suppose to go today for my next Sterlara shot but not sure what my GI is going to do....I really hate being on prednisone!! I keep begging for them to taper me from the 20mg I have been on for a while now, but they do not want to mess with it while in the study! I am sorry you felt worse, I hope you find some sort of relief soon. Good luck at your appt.
David
Co-Founder
- Location
- Naples, Florida
Wait. They've kept you on 20mg of prednisone for a prolonged period of time because of the study?
Umm, how long?
And they specifically said they're not tapering you because of the study?
Umm, how long?
And they specifically said they're not tapering you because of the study?
They said they do not want to alter my meds. I started prednisone in Sept and have tapered to 20mg and been steady on 20mg since Nov 22nd. I have my appt next week for my injection where I will insist on tapering. I have a lot of the side effects and tehy are killing me!!
David
Co-Founder
- Location
- Naples, Florida
Wow. If you like, I can have some people look into this for you as I'm guessing there is, at best, a severe ethical violation here.
I appreciate that, but I do like my Dr. and think he has my best interests in mind. He has his reasons, but I also have mine for wanting off of it. I only noticed a difference at a higher dose, once I got below 35mg, no differrence. I hadnt been on it for years and hope I dont have to again anytime soon. Thanks again for the offer
I just had my first injection of Stelara last week. I am having some crapping today but sure if its related to the shot or just random event. I am actually being treated for psoriasis but have had crohns since I was 9 I am 39 now. I was on humira for 6 years and It has worked wonderful. remission since my last surgery which was 2006. Started Stelara because my psoriasis was at a point that I need to cover up my body before going out. Hopefully I won't regret the decision maybe this crapping will soon go away. I also have rheumatoid arthritis.
David
Co-Founder
- Location
- Naples, Florida
Welcome to the forum Marc. I hope that Stelara works great for you! Please keep us updated on your progress. If you'd like to give a more in-depth introduction, we'd love to properly welcome you in our Your Story forum located here.
Insurance denied Stelara for me, since it's not yet FDA approved, and also so expensive, and since I haven't tried "everything" else approved. So off to try Cimzia, I suppose. Other than that, I feel that's all the major meds that I've done: Remicade, Humira, Tysabri. Any others I'm missing?
Also, does anyone know about how close this is to FDA approval for Crohn's?
Also, does anyone know about how close this is to FDA approval for Crohn's?
@JoshW: Don't give up! My insurance denied me the Stelara my first try at getting it, but we appealed and they relented. We sent the abstract from the Phase 2b study that showed how effective it was in Crohn's, as well as evidence of my illness (labs, a scope report, the latest MRE report I had)
As far as the rest of the Stelara crew: how is everyone feeling? My dose is at 45mg q 2 wks, and I'm at 2.5 mg of pred. The past few days I've had some D but I'm trying to be really gentle and stave it off.
As far as the rest of the Stelara crew: how is everyone feeling? My dose is at 45mg q 2 wks, and I'm at 2.5 mg of pred. The past few days I've had some D but I'm trying to be really gentle and stave it off.
Joshw- A lot of people have had success with Cimzia, so it might be worth a shot unless you have reasons you would like to avoid it? If so, I'm with Linn, don't give up. Insurance companies love to deny things the first time around, and force you to appeal. Often times appeals are approved when the original decision was denied. Best of luck!
Update on me- I know some of you (like Linn) will remember my last update, but here's a little background for those of you that might not... I qualified for an allogeneic stem cell transplant at Northwestern in Chicago in December 2011. I then spent the next 5 months or so fighting the insurance to approve the transplant. After my final denial we devised a new plan. Because I would be eligible for medicare in Jan. 2012 (due to SSDI), and they would cover a large portion of the cost, we would spend the next 7 months until then raising the portion that I could expect to pay. Taking in to account the $25k "downpayment", travel, and living expenses while we were there, and the 20% of some additional bills I could expect to pay, we set the goal at 40k, with Jan. 1, 2013 as our goal date. In the meantime, while we were fundraising, fistuals and abscesses became a big concern, and we decided I needed to try another medicine to "bridge the gap". Based on a recommendation from my Mayo Clinic doctor, my local GI and I decided to give Stelara a shot.
After some back and forth with the insurance, and debates over what dose to start me on, I began taking stelara injections at 90mg every 4 weeks. Each time I received an injection I had a worse reaction to it. Then, around November (approx 6 months on Stelara) I had to stop taking it, after the allergic reaction I was having to it became too severe. Well, at the time, I was having more better days than normal, but had not seen a significant increase in my well being symptom wise anyway. Even though my tests were showing some improvement I did not feel like my symptoms correlated with the test results, and given the scary reactions I quit taking it.
(As a side note, when I was in the hospital in October from a reaction I consulted with a neurologist who thought a separate problem I was having was one with my vestibular response. The long and short of it was that since I had noticed a pattern of activity making me more ill over the past couple of years, I had became very inactive. So, whenever I would do simple things like walking from one end of a room to the other, or standing in one place for 5 minutes, my heart would race, and I would feel out of breath, and often off balance and dizzy. He suggested Physical Therapy to recondition my vestibular response. I reluctantly agreed. I thought it would make my Crohn's flare more, but I knew that my ultimate goal was to go into the transplant as otherwise healthy as possible. So, in mid-November, I started PT)
Fast forward to the end of January this year. I went to Chicago for my pre-transplant testing. Overall I was feeling much more fit from physical therapy, and I was concerned going into the testing that I wouldn't be "sick enough". I was actually feeling better at that point then I had in a long time. I feared going there, and having them tell me that things looked too good to proceed. Although on the one hand I questioned keeping the appointment because I felt better than I had in a long time, on the other I knew I was still feeling way to sick to live a normal life, and that I didn't want to live "good enough", I wanted my life back. Ultimately, I decided to just go.
After meeting with Dr.Yun (GI at Northwestern), and discussing my current symptoms and quality of life, we both decided I should proceed with the transplant, given my testing correlated with my symptoms. It did not. My testing looked better than it has in a long time. Although part of me expected it, I was still shocked. I felt like the rug had been pulled out from underneath me. Here I was, finally in Chicago, money raised, the rest of my body conditioned, mentally ready, with my family all supporting me, my donor tested out perfectly...and for the first time in years, my Crohn's had truly improved. As stupid as it sounds, I was pissed. I knew how I felt on a daily basis. I knew I was still too sick to live like a person should, yet my tests told a different story.
The doctor and I discussed everything and he said that his best advice was just for me to come back when I felt worse. I honestly knew what he meant because I had been feeling an improvement... but as the same time it felt like a slap across the face because I felt like no one was understanding or believing me that I was still a very sick person, despite not being "as sick" as I had been 6 months prior. He said his best guess is that the Stelara had helped me significantly, and that as time went on without it, and it completely worked its way out of my system I would be back... "It could be 2 weeks, it could be 2 months or more, I don't know. Just let us know when you are feeling worse and we can retest you and hopefully proceed with the transplant at that point".
It has been 2 months now since my appointment and I am no worse off then I was then...maybe even a little better. And that's with NO prednisone!
Who knows, maybe the Stelara snapped my body out of it and I will progressively get better on my own now, even without being able to take it anymore. Maybe 6 months is all my body needed. Or, maybe it was the Physical Therapy, and custom tailored exercises that allowed me to be active without straining my stomach... I must say though, I am very thankful for every good day God gives me.
I still feel frustrated at my very limited diet, and my inability to do many activities, and feeling like I am just living in limbo... too sick to go back to nursing school like I want to, but too healthy to proceed with transplant. I am trying very hard to remind myself that everything happens for a reason, and maybe the transplant wasn't right for me...or at least right now. I know a lot of ppl on this forum would love to feel some sense of relief like I have, so I feel guilty complaining at all. But, I do feel like I am still waiting for the other shoe to drop as they say, and truly believe I will be back in Chicago in the future to proceed. In the meantime, I'll take what I can get, and enjoy the good days.
Sorry this was so long, I just wanted to post an in depth up date to explain things, and to say to the rest of you out there that are waiting for SOMETHING to finally help you... Stelara may have done it for me! Don't give up hope even if you don't feel a large response right away...give it some time. And most definitely don't give up before you give it a try just because it is a hassle to get approved.
Good luck everyone!
p.s. In regards to the debate over where it is less painful to inject... I have found whatever place on your body is the most fatty. At different stages of my disease my stomach has been fatter, and at others it has been my thighs. Which ever is the most chunky deserves the prick!:ylol:
Update on me- I know some of you (like Linn) will remember my last update, but here's a little background for those of you that might not... I qualified for an allogeneic stem cell transplant at Northwestern in Chicago in December 2011. I then spent the next 5 months or so fighting the insurance to approve the transplant. After my final denial we devised a new plan. Because I would be eligible for medicare in Jan. 2012 (due to SSDI), and they would cover a large portion of the cost, we would spend the next 7 months until then raising the portion that I could expect to pay. Taking in to account the $25k "downpayment", travel, and living expenses while we were there, and the 20% of some additional bills I could expect to pay, we set the goal at 40k, with Jan. 1, 2013 as our goal date. In the meantime, while we were fundraising, fistuals and abscesses became a big concern, and we decided I needed to try another medicine to "bridge the gap". Based on a recommendation from my Mayo Clinic doctor, my local GI and I decided to give Stelara a shot.
After some back and forth with the insurance, and debates over what dose to start me on, I began taking stelara injections at 90mg every 4 weeks. Each time I received an injection I had a worse reaction to it. Then, around November (approx 6 months on Stelara) I had to stop taking it, after the allergic reaction I was having to it became too severe. Well, at the time, I was having more better days than normal, but had not seen a significant increase in my well being symptom wise anyway. Even though my tests were showing some improvement I did not feel like my symptoms correlated with the test results, and given the scary reactions I quit taking it.
(As a side note, when I was in the hospital in October from a reaction I consulted with a neurologist who thought a separate problem I was having was one with my vestibular response. The long and short of it was that since I had noticed a pattern of activity making me more ill over the past couple of years, I had became very inactive. So, whenever I would do simple things like walking from one end of a room to the other, or standing in one place for 5 minutes, my heart would race, and I would feel out of breath, and often off balance and dizzy. He suggested Physical Therapy to recondition my vestibular response. I reluctantly agreed. I thought it would make my Crohn's flare more, but I knew that my ultimate goal was to go into the transplant as otherwise healthy as possible. So, in mid-November, I started PT)
Fast forward to the end of January this year. I went to Chicago for my pre-transplant testing. Overall I was feeling much more fit from physical therapy, and I was concerned going into the testing that I wouldn't be "sick enough". I was actually feeling better at that point then I had in a long time. I feared going there, and having them tell me that things looked too good to proceed. Although on the one hand I questioned keeping the appointment because I felt better than I had in a long time, on the other I knew I was still feeling way to sick to live a normal life, and that I didn't want to live "good enough", I wanted my life back. Ultimately, I decided to just go.
After meeting with Dr.Yun (GI at Northwestern), and discussing my current symptoms and quality of life, we both decided I should proceed with the transplant, given my testing correlated with my symptoms. It did not. My testing looked better than it has in a long time. Although part of me expected it, I was still shocked. I felt like the rug had been pulled out from underneath me. Here I was, finally in Chicago, money raised, the rest of my body conditioned, mentally ready, with my family all supporting me, my donor tested out perfectly...and for the first time in years, my Crohn's had truly improved. As stupid as it sounds, I was pissed. I knew how I felt on a daily basis. I knew I was still too sick to live like a person should, yet my tests told a different story.
The doctor and I discussed everything and he said that his best advice was just for me to come back when I felt worse. I honestly knew what he meant because I had been feeling an improvement... but as the same time it felt like a slap across the face because I felt like no one was understanding or believing me that I was still a very sick person, despite not being "as sick" as I had been 6 months prior. He said his best guess is that the Stelara had helped me significantly, and that as time went on without it, and it completely worked its way out of my system I would be back... "It could be 2 weeks, it could be 2 months or more, I don't know. Just let us know when you are feeling worse and we can retest you and hopefully proceed with the transplant at that point".
It has been 2 months now since my appointment and I am no worse off then I was then...maybe even a little better. And that's with NO prednisone!
Who knows, maybe the Stelara snapped my body out of it and I will progressively get better on my own now, even without being able to take it anymore. Maybe 6 months is all my body needed. Or, maybe it was the Physical Therapy, and custom tailored exercises that allowed me to be active without straining my stomach... I must say though, I am very thankful for every good day God gives me.
I still feel frustrated at my very limited diet, and my inability to do many activities, and feeling like I am just living in limbo... too sick to go back to nursing school like I want to, but too healthy to proceed with transplant. I am trying very hard to remind myself that everything happens for a reason, and maybe the transplant wasn't right for me...or at least right now. I know a lot of ppl on this forum would love to feel some sense of relief like I have, so I feel guilty complaining at all. But, I do feel like I am still waiting for the other shoe to drop as they say, and truly believe I will be back in Chicago in the future to proceed. In the meantime, I'll take what I can get, and enjoy the good days.
Sorry this was so long, I just wanted to post an in depth up date to explain things, and to say to the rest of you out there that are waiting for SOMETHING to finally help you... Stelara may have done it for me! Don't give up hope even if you don't feel a large response right away...give it some time. And most definitely don't give up before you give it a try just because it is a hassle to get approved.
Good luck everyone!
p.s. In regards to the debate over where it is less painful to inject... I have found whatever place on your body is the most fatty. At different stages of my disease my stomach has been fatter, and at others it has been my thighs. Which ever is the most chunky deserves the prick!:ylol:
My husband started Stelara last fall and immediately responded. He had previously been on Humira for 7 years, but it stopped working. Results are good so far, but we are always holding our breath - he is about 1 surgery away from TPN. He is down to about 6.5 ft of small bowel and no colon. Not sure how he manages day to day, but we are getting by.
We did get off label approval for Stelara from our insurance company, but copays are still high - we just got a $2,000 bill for the first shipment of the year.
Does anyone know how close they are to FDA approval for Crohn's - then we could use the copay savings card! For now, we just have to make it work.
We did get off label approval for Stelara from our insurance company, but copays are still high - we just got a $2,000 bill for the first shipment of the year.
Does anyone know how close they are to FDA approval for Crohn's - then we could use the copay savings card! For now, we just have to make it work.
My daughter is going to be getting her first Stelara injection on Monday. Our insurance company approved it thank goodness! She will get 90mg and then another injection in four weeks etc.... We have tried all the other biologics also! I really hope this works for her!
Any other updates on how the Stelara is working for everyone???
Raechel, I am so sorry to hear your latest update, but happy you have found a bit of relief. hang in there!
Well, the computer has kicked me out of the Stelara study since i was having no improvement. I met with my 2 GI's, 1 in network, 1 out of my network. I have exhausted all of my resources and my choices are Cyclosporine, Tysabri or surgery again. I have chosen to try Cyclosporine, but i know my insurance will deny it because it is experimental and only offered at an out of network hospital and it requires a 2 week stay. I tested possitive for the JC Virus, so I REALLY do not want to go the Tysabri route. If I agree to surgery, I do not have any choices of medicine left to try to avoid immediate crohns symptoms again. They have said we have run out of options. I was told about 1 more possible study, but i have to have the Stelara out of my system for 1 year before that can happen. Have any of you tried Tysabri while having tested possitive for the JC Virus? I was told there is only a 2-4% chance of getting PML if you have tested possiitve, and slim to no chance if taken for less than a year, but PML scares the hell out of me! Just wondering if any of you are familiar with Tysabri and testing + for JC Virus I appreciate any input. Thanks a bunch!
Well, the computer has kicked me out of the Stelara study since i was having no improvement. I met with my 2 GI's, 1 in network, 1 out of my network. I have exhausted all of my resources and my choices are Cyclosporine, Tysabri or surgery again. I have chosen to try Cyclosporine, but i know my insurance will deny it because it is experimental and only offered at an out of network hospital and it requires a 2 week stay. I tested possitive for the JC Virus, so I REALLY do not want to go the Tysabri route. If I agree to surgery, I do not have any choices of medicine left to try to avoid immediate crohns symptoms again. They have said we have run out of options. I was told about 1 more possible study, but i have to have the Stelara out of my system for 1 year before that can happen. Have any of you tried Tysabri while having tested possitive for the JC Virus? I was told there is only a 2-4% chance of getting PML if you have tested possiitve, and slim to no chance if taken for less than a year, but PML scares the hell out of me! Just wondering if any of you are familiar with Tysabri and testing + for JC Virus
I appreciate any input. Thanks a bunch!Chronie- Sorry to hear it wasn't helping you and you are out of the study :-( I don't have any experience with Tysabri, so I'm not much help there. Have you heard about the stem cell transplants being done for Crohns at Northwestern in Chicago, IL? I talked about my experience qualifying so far in my last post, but didn't give many details about the procedure itself. There are a few different threads on here about it including http://www.crohnsforum.com/showthread.php?t=16284 and http://www.crohnsforum.com/showthread.php?t=39518. If you haven't already it may be worth looking in to. If you want to pm me I can even give you all the contact information. I am not sure if you can be accepted into the trial if you have recent Tysabri use though, so you might want to check it out if it is something that might interest you before you make any decisions.
Hi Raechel,
They offer that at the same location I have my last study at, but the problem is I have to wait at least 1 year to get the Stelara out of my system from the last study. I am scared of Tysabri due to PML. My other issue is if I have surgery, what am I supposed to take to prevent immediate inflammation and scar tissue again? That is my concern at this point. I appreciate the reply and hope all goes well with you
Thanks a bunch,
Teresa
They offer that at the same location I have my last study at, but the problem is I have to wait at least 1 year to get the Stelara out of my system from the last study. I am scared of Tysabri due to PML. My other issue is if I have surgery, what am I supposed to take to prevent immediate inflammation and scar tissue again? That is my concern at this point. I appreciate the reply and hope all goes well with you
Thanks a bunch,
Teresa
Reachel, I may have spoke to soon saying they offer that at my location. I will have to look more into this It was mentioned to me during my last study. Thanks for the info!
It was mentioned to me during my last study. Thanks for the info!Oh, ok. At northwestern they didn't require me to wait between stopping the stelara and having the transplant. Maybe it has something to do with me not being on an actual trial but rather just using it off label? Or maybe it just varies by facility. I don't have any other suggestions for you but please keep me informed if you try something else and how it works for you. The past couple of weeks for me have been increasingly worse and would love to know with our similar situations (in regards to limited medications left to try), what you end up doing and how it works.
I believe it is also a study they were offering for stem cell therapy, but I could be mistaken. I have found that my short term memory is horrible now! If I dont write things down I forget what I was saying or doing! I will definitely keep you posted and hope you do the same Thank you
Thank you
I'm appreciating reading everyone's Stelara experiences. My son (now 13 yrs old, 80 pounds) started Stelara in February. He received his 5th dose today. His dosing schedule is 45mg injection every 8 weeks.
Wondering a couple of things. (1) Many of you are receiving 90mg every 4 or 8 weeks. How did your doctor determine your dose and schedule? (2) When you say "infusion," are you receiving the medication as an injection or through an IV over a few hours?
I'll be checking in from time-to-time to see how all of you are doing.
When my son began the Stelara, he already had a couple of very serious strictures. He needed surgery to address those in April. Between the surgery and Stelara, we are very hopeful for a nice long remission.
Best wishes to all.
Cheryl
Wondering a couple of things. (1) Many of you are receiving 90mg every 4 or 8 weeks. How did your doctor determine your dose and schedule? (2) When you say "infusion," are you receiving the medication as an injection or through an IV over a few hours?
I'll be checking in from time-to-time to see how all of you are doing.
When my son began the Stelara, he already had a couple of very serious strictures. He needed surgery to address those in April. Between the surgery and Stelara, we are very hopeful for a nice long remission.
Best wishes to all.
Cheryl
Hi Cheryl,
In regards to dosing...My local doctor was in contact with my Mayo clinic doctor and she told him what dosage they were going to be starting trials with, (270 starter dose, and then 90mg evey 4 weeks after that ), so that is what my local doctor followed since the Mayo doctor was much more familiar with it then him. Unfortunately, the insurance wouldn't approve the starter dose. So, I ended up taking 90mg every 4 weeks.
To answer your second question, my method of receiving the medicine was an injection.
Best of luck to you and your son,
Raechel
In regards to dosing...My local doctor was in contact with my Mayo clinic doctor and she told him what dosage they were going to be starting trials with, (270 starter dose, and then 90mg evey 4 weeks after that ), so that is what my local doctor followed since the Mayo doctor was much more familiar with it then him. Unfortunately, the insurance wouldn't approve the starter dose. So, I ended up taking 90mg every 4 weeks.
To answer your second question, my method of receiving the medicine was an injection.
Best of luck to you and your son,
Raechel
Hi Cheryl,
As for me, I was part if a study. I am not sure exactly how I received my first dose. I received an infusion which may or may not have been the "real deal". Then in Feb for my 2nd dose, I received both an infusion and an injection. One was Stelara, the other a placebo. In April, they realized it was not working and the computer kicked me out of the study. I can only guess that I received the medicine in December, but it is only a guess. I believe the first infusion dose would have been 270mg and 90mg for the injections. I wish I could be more help. Since your son is only 80lbs, that is probably the reason for the lower dose, but I cannot be sure. I really hope this works for your son! Wishing him well!
Teresa
xoxo
As for me, I was part if a study. I am not sure exactly how I received my first dose. I received an infusion which may or may not have been the "real deal". Then in Feb for my 2nd dose, I received both an infusion and an injection. One was Stelara, the other a placebo. In April, they realized it was not working and the computer kicked me out of the study. I can only guess that I received the medicine in December, but it is only a guess. I believe the first infusion dose would have been 270mg and 90mg for the injections. I wish I could be more help. Since your son is only 80lbs, that is probably the reason for the lower dose, but I cannot be sure. I really hope this works for your son! Wishing him well!
Teresa
xoxo
Hi guys--
Just wanted to get an update on how everyone's feeling, and also ask what your dosing schedule is looking like?
I'm still at a 45mg q2wks dose, but now that I'm down to 2mg of prednisone, the effects start to dwindle between doses. Like I'll make it about ten days and then my symptoms return--much to the chagrin of my fistulas that are trying to heal.
I also started on helminths, and experienced a wave of good health followed by a recurrence of my symptoms, as is pretty much the norm for hookworms. We shall see.....
Hope everyone is feeling well. Anyone dosing more frequently or at a higher dose than 45mg q2wks?
linn
Just wanted to get an update on how everyone's feeling, and also ask what your dosing schedule is looking like?
I'm still at a 45mg q2wks dose, but now that I'm down to 2mg of prednisone, the effects start to dwindle between doses. Like I'll make it about ten days and then my symptoms return--much to the chagrin of my fistulas that are trying to heal.
I also started on helminths, and experienced a wave of good health followed by a recurrence of my symptoms, as is pretty much the norm for hookworms. We shall see.....
Hope everyone is feeling well. Anyone dosing more frequently or at a higher dose than 45mg q2wks?
linn
Hi Linn,
I am not on anything at the moment. Waiting for my insurance to approve/deny Cyclosporine. Not feeling well today at all! Hope you hang in there!
I am not on anything at the moment. Waiting for my insurance to approve/deny Cyclosporine. Not feeling well today at all! Hope you hang in there!
My daughter has had three shots of the Stelara... all 90mg and 4 weeks apart. She is doing really well. Went to see her GI today and he said she looks great. They are prob going to schedule a scope in December to check to see if the inflammation is clearing up. She is not on any other meds other than the Stelara.
My 13 yr old Gus is doing G-R-E-A-T!!! Has received his 5th dose already.
He is receiving 45mg every 2 months. No other meds at this time. He does run a g-tube feed at night for extra calories and nutrition.
Looking forward to a good Summer ...and maybe the whole school year.
He is receiving 45mg every 2 months. No other meds at this time. He does run a g-tube feed at night for extra calories and nutrition.
Looking forward to a good Summer ...and maybe the whole school year.
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- Location
- Long Island NY
My daughter will be getting her 2nd dose July 3rd...90mg every 6 weeks. Still having frequent BM's and not gaining weight yet. She is currently weaning Entocort, hoping the Stelara kicks in soon. Also had some swelling of her lips 11 days after her injection?? Derm did not think it was caused by Stelara, she said it looked like a contact dermatitis. Our GI is learning along with us as Liv is his first patient to use Stelara. Still keeping everything crossed that this drug will help my girl achieve remission! Kim
Kim,
Gus is our GI docs first Stelara patient too. It's not easy being among the first (outside of the trials) to use a new med, but I'm glad we have the opportunity!!!
Cheryl
- Location
- Long Island NY
Hi Cheryl! I am so happy to hear that Gus is doing well after all he has been through! I hope he has a wonderful and fun- filled summer vacation (and you too!). I am so happy to have others to lean on while we are trialing this med...it is very scary when you feel like you are in it alone. I did feel the same way when I started Liv on LDN, docs were not supportive, but everyone here was wonderful and helped ease my fears. It is tough making these decisions for our precious children. Praying for these kids to have positive results with Stelara! Kim
So sorry to hear that. I hope that you will be able to find some comfort soon.
My name is kevin i am 30 years old have had Crohn's for 7 years, have had 4 resections a colstomy bag now for 4 years in 2010 i spend 160 days in the hospital almost died. I have been on every drug know to man for Crohn's from Remicadee to cimzia to humira to 160mg a day of predisone to entocort to you name it i have tried it. I started stalera about 7 months ago when i was out of options my dr is the best in the world in Crohn's and made the decision he wasnt going to wait. they are a great drug company has helped me out a ton. I have never been in remission i had three resections in 2 years at on point. i started stelara 8 months ago and it has saved my life, i am almost in full remission i have not been in the hospital for 8 months no iv fluids 3 times a week anymore no vitamin suplements except over the counter no more iron injections or postassium. This drug has saved my life. I have no side effects and even if i do in 10 years or 40 years this drug makes me feel like i am 20 years old and nothing wrong. visited with my surgeon yesterday and we are going to try to take off the colostomy bag in late august hopefully. I thought i would have it the rest of my life. I know not all drugs work for certain people but stalera was the drug for me. I am now able to do whatever i want with my daughter and wife. this drug and has seriously changed my life and would love to thank the company for this drug. Thank you Stalera you have made my life awesome again.
Hi Kevin!
I am so glad to read your good news about Stelara! My daughter who is 18 had her fourth loading injection of Stelara so has been on it about 4 months now. She seems to be doing very well also! She also has a temp ileostomy for a little over a year now due to a perforated colon during a colonoscopy. They have not been able to reverse it because her colon has still been so inflammed because none of the other meds have been working. She has also been on every med out there (Remicade, Humira, Cimzia etc)... and her doctor, after her last colonoscopy showed no improvement, went to Stelara. We are so hopeful that this will be the medication that works for her! If it does, she can hopefully have the temp ileostomy reversed next summer. She starts college in the fall and will be away so we needed a time where she would have at least 4 weeks recovery which will not be till the summer unfortunately. Hopefully the Stelara will work and her next colonoscopy will show improvement! I was so happy to read your post saying how it has been a livesaver for you! Keep the updates coming and thank you!!!
Therese
I am so glad to read your good news about Stelara! My daughter who is 18 had her fourth loading injection of Stelara so has been on it about 4 months now. She seems to be doing very well also! She also has a temp ileostomy for a little over a year now due to a perforated colon during a colonoscopy. They have not been able to reverse it because her colon has still been so inflammed because none of the other meds have been working. She has also been on every med out there (Remicade, Humira, Cimzia etc)... and her doctor, after her last colonoscopy showed no improvement, went to Stelara. We are so hopeful that this will be the medication that works for her! If it does, she can hopefully have the temp ileostomy reversed next summer. She starts college in the fall and will be away so we needed a time where she would have at least 4 weeks recovery which will not be till the summer unfortunately. Hopefully the Stelara will work and her next colonoscopy will show improvement! I was so happy to read your post saying how it has been a livesaver for you! Keep the updates coming and thank you!!!
Therese
kevton and Therese,
Thanks for sharing your stories. They are EXTREMELY encouraging for us!! My son has had his fifth dose and is due for his sixth in about 20 days. Between the Stelara and the resection in May, he is doing phenomenally well! So far, so good for the Summer anyway. I just hope this feeling of well-being and no pain lasts into the school year!
Cheryl
Thanks for sharing your stories. They are EXTREMELY encouraging for us!! My son has had his fifth dose and is due for his sixth in about 20 days. Between the Stelara and the resection in May, he is doing phenomenally well! So far, so good for the Summer anyway. I just hope this feeling of well-being and no pain lasts into the school year!
Cheryl
Good morning to all,
Just wanted to say if you have any questions about anything i am pretty smart when it comes to bowel disease. I speak to younger kids about it and help them understand that it is not that bad. But yes stalera is absolutley the best i have ever felt, yes i did have some side effects to the drug the first injection i had blisters the size of golf balls on my stomach the second injection dont get me wrong i was scared i went blind for about 8 hours scared me to but my stomach was feeling better and my output went from 35 times a day to 12 with in the first 2 injections so i decided to keep using the stalera. I have not had any side effects since then i was taking 135 at a time for the first 6 injections but now have went down to 90 and still feel great. The company has been amazing and i would love to promote this drug for them if they need a spokes person. I would do anything for this company. i use to have to set my alarm every hour at night even with taking a tincture of opium which if your daughter hasnt tried it is amazing. I can now take the tincture of opium and go anywhere from 5 to 8 hours without going to the bathroom. it has been a great temperary life saver but nothing like Stalera. I can now sleep all night. If any questions just send back but thanks to all and wish everyone the best on finding the drug that works for them.
Just wanted to say if you have any questions about anything i am pretty smart when it comes to bowel disease. I speak to younger kids about it and help them understand that it is not that bad. But yes stalera is absolutley the best i have ever felt, yes i did have some side effects to the drug the first injection i had blisters the size of golf balls on my stomach the second injection dont get me wrong i was scared i went blind for about 8 hours scared me to but my stomach was feeling better and my output went from 35 times a day to 12 with in the first 2 injections so i decided to keep using the stalera. I have not had any side effects since then i was taking 135 at a time for the first 6 injections but now have went down to 90 and still feel great. The company has been amazing and i would love to promote this drug for them if they need a spokes person. I would do anything for this company. i use to have to set my alarm every hour at night even with taking a tincture of opium which if your daughter hasnt tried it is amazing. I can now take the tincture of opium and go anywhere from 5 to 8 hours without going to the bathroom. it has been a great temperary life saver but nothing like Stalera. I can now sleep all night. If any questions just send back but thanks to all and wish everyone the best on finding the drug that works for them.
I have officially joined the club! I got my first dose yesterday, 3 90 mg shots. Was not happy to learn it was 3 shots at first, because I'm sooo underweight I have no sub-q area to give the shots, really, plus between my PEG tube and ileostomy my stomach area is pretty much all covered! Turns out it went great! The needles seemed to be the smallest/least painful (not that I ever though the needles were painful) of Cimzia and Humira, and the medicine didn't sting at all!
I was told I would then get 1 90 mg shot in 8 weeks but then later a different nurse said he thinks he saw something for me to get more medicine in 2 weeks? Not quite sure, so giving the office a call on Monday. It's made harder with the medicine not being FDA approved for Crohn's yet, so there's no standard dosing for Crohn's, at least that I can find. Oh well, got my fingers crossed that it will work well because I'm sick of being sick, haha. I miss food.
I was told I would then get 1 90 mg shot in 8 weeks but then later a different nurse said he thinks he saw something for me to get more medicine in 2 weeks? Not quite sure, so giving the office a call on Monday. It's made harder with the medicine not being FDA approved for Crohn's yet, so there's no standard dosing for Crohn's, at least that I can find. Oh well, got my fingers crossed that it will work well because I'm sick of being sick, haha. I miss food.
- Location
- Long Island NY
Hi Cheryl! How is Gus feeling today? Hope all is well! Kim
Kim,
Gus was complaining of some anal discomfort a few months ago and the doctor ordered a medicated enema for him...but then the discomfort went away. The good news is that we still have the med now, when he really needs it. Even the first dose of the med helped a lot. I'm supposed to give him the enema for once a day for seven days.
I'm debating giving him the full course of medicine and then see if the pain comes back before I notify the doctor. Gus has been doing so well on the Stelara and we really need a nice long break from the Crohn's issues.
If Gus has active disease, then his doctor will most likely determine that the Stelara isn't working and stop administering it. My concern is that if the disease is "stronger" than the Stelara, then what? Where do we go next?? I know the next best option is just starting trials and won't be available for a couple of years.
Sigh...it's not easy being the momma.
Cheryl
Gus was complaining of some anal discomfort a few months ago and the doctor ordered a medicated enema for him...but then the discomfort went away. The good news is that we still have the med now, when he really needs it. Even the first dose of the med helped a lot. I'm supposed to give him the enema for once a day for seven days.
I'm debating giving him the full course of medicine and then see if the pain comes back before I notify the doctor. Gus has been doing so well on the Stelara and we really need a nice long break from the Crohn's issues.
If Gus has active disease, then his doctor will most likely determine that the Stelara isn't working and stop administering it. My concern is that if the disease is "stronger" than the Stelara, then what? Where do we go next?? I know the next best option is just starting trials and won't be available for a couple of years.
Sigh...it's not easy being the momma.
Cheryl
- Location
- Long Island NY
I know how you feel! Liv has had 2 doses of Stelara so far and her labs this month are starting to slip as we wean from Entocort. Her ferritin and Vit D levels have suddenly dropped, even though CD symptoms seem to be at bay. We are still chasing thyroid numbers, and we had to go up, yet again, on her Synthroid. She is now on a dose high enough to kill a large horse (weight is at 107lbs right now)! Today we went to the beach and she complained of "not feeling well" (don't we CD parents just hate to hear those 3 words!) and I had to get her into the AC immediately because she felt nauseous and like she was going to pass out. For 2 days she has also complained of "not feeling right", jittery. heart palpitations and inability to fall asleep at night. Yah, those thyroid numbers are definitely off again...put a call out to Endo already and will be checking levels tomorrow. Hmmm. maybe we have some intestinal mucosal healing going on with Stelara, and need to finally start dropping that synthroid dose! Hey, I have to find the positive side to this somehow, as I will be sending her off to college in about 3 more weeks! Yikes! I am terrified! I hope Gus continues to have relief and this blip will pass quickly! Go Stelara! Kim