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Stelara

raechel

raechel

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
 
David

David

Co-Founder
Location
Naples, Florida
Hi Raechel,

I'm sorry that you haven't received any responses until now. I'm not on Stelara and I'm not familiar with anyone here currently on it (though there are people looking at going on it as well) mostly because it would be off-label use here in the states. It's not currently approved for use with Crohn's Disease but clinical trials are ongoing and have been promising. You can read a news report here.

Hopefully someone does come across this thread who is on Stelara as I'd love to hear about their experiences as well. If you do go on it, please keep us updated as to your progress with it!
 
raechel

raechel

Thanks, David! I will definintely keep everyone posted if I do start the stelara.I would prefer stem cell therapy to stelara, but I am waiting on that as well. I went to Northwestern in December and I qualified for the stem cell transplant, but I am waiting for insurance approval. Aenta denied the inital request, and I am waiting on the appeal now... If the appeal is denied, I just might give Stelara a try! Maybe by then someone else who has tried Stelara will see this post and give me some input too :)
 
raechel

raechel

The formal denial was worded that it was experimental, and had not been proven effective for crohns, etc... But, when I talked to northwestern they said the real issue is with the fact that it is employer funded Aetna, so my insurance is not only though aetna but UPS as well (although my membership cards, EOB's etc. are only from Aetna). Basically, it sounds like in order for Aetna to approve it they would also have to have UPS (employer) give it the okay. Nothwestern is filing the appeal for me.... fingers crossed!
 
S

s5599

Hi - I am using Stelara for my Crohn's approved for off-label use. It's the only drug that's helped me. Remicade helped for a couple of years, but once I lost that, none of the others worked. I've even tried Tysabri. (scary). It was amazing! Within 2 months I am in clinical remission and all of my labs are normal! First time in 5 years! (My ESR was constantly 80, now 25... CRP was 50, now 6) I still feel stuff and have to use rectal meds, but i feel SO SO much better.
 
raechel

raechel

s5599- Thank you so much for your reply. It is great to hear from someone that has been on stelara, and even better to hear that it has worked! I similarly had remicade work for a short time, and have had trouble finding an effective treatment since then. Hearing from someone with personal experience makes me more optimistic about this as a treatment option.
Have you experienced any bad side effects?
 
L

Linn

Hi! Any information on getting stelara in the united states off label would be greatly appreciated. I think this may be my next move.
 
raechel

raechel

Linn- I am thinking it may be my next move as well. I haven't had much success researching it, and have got conflicting opinions from different GI's. One told me she is having a lot of success with stelara with patients that did not respond to the anti-TNF's (Mayo Clinic, MN doc) . Another told me to avoid it because there is too high of a risk of neurological issues in people with Crohn's ( Northwestern in Chicago doc). I am meeting with my local GI next Tuesday to further discuss. Please let me know anything you find, and I will do the same. Good luck!
 
L

Linn

Pish-posh...neuro problems? I was on tysabri 3 years and felt amazing....and I'm a medical student, constantly around sick people. I will totally keep you posted with whatever I find out. I have a feeling this stuff is going to be awesome, it seems like it works for a lot of tysabri responders. Those 3 years on tysabri were the healthiest of my life, I took no other meds and felt like a new woman. Good luck to you.
 
glum chump

glum chump

I was on Stelara as part of a Phase II study, and it worked brilliantly for me. I couldn't afford it as an 'off-label' drug, so wasn't able to pursue it. I have MS and didn't notice any adverse affects on my neurological symptoms, although I've been on other drugs that have made my symptoms worse.

The company that makes Stelara has recently began sharing their findings from their Phase II study, and I believe they're looking now to get approval for beginning Phase III study. From what I can tell, the results were rather lukewarm...people either responded really quickly, or didn't respond at all. But there were enough positive results for the company to proceed, so that's good news for having another option in the available Crohn's drugs.

Cheers,

Kismet
 
K

kdgdi

I am part of the phase 3 study. Got my mystery dose on 4-2-12. Do not notice any significant changes yet. Only been a few days. I will try and keep you updated on my experience.
 
L

Linn

P.s...update---I got my doctor to write it off label. Now its a matter of either getting my insurance to cover it or finding a way to pay for it. We're awaiting the decision of my insurances....fingers crossed.....gahhhhh.
 
L

Linn

I KNOW. i couldn't believe the price.

my doc wants to do a 270 mg induction (based on a 6mg/kg induction being used in the phase III trial now) and then a 90 mg maintenance every 8wk thereafter...
 
David

David

Co-Founder
Location
Naples, Florida
Wow, I had no idea Stelara was that expensive. Crazy.

Ian, please do keep us updated on your experience! I'm sure many here would appreciate that. Fingers crossed for you!
 
K

kdgdi

Doing pretty good

It is almost 2 weeks into the study. Today I had the closest to a regular bowel movement that I have ever had in over 4 years. I am feeling much more "normal" than I have ever felt as well. It is strange to feel better when you have been sick for so long. I am happy to think that this might be the drug that puts me into a remission!!!!
 
K

kdgdi

What is off label?


My insurance also denied me and even with appeals. I was quoted 5,000 for the shots. I have blue cross blue shield insurance. I was glad to be able to get into this study.
 
raechel

raechel

Wow, so much insight. Thank you everyone! Linn- I will be praying for you that you can get insurance approval! I too got my doctor to agree to prescribe off label, but am waiting to hear from insurance now. I haven't been able to find what it would cost me out of pocket otherwise aside from what you and Ian have posted here. I am already fighting with my insurance to cover a stem cell transplant. Maybe they'll compare costs of the two and at least approve one... I hope.

Ian- Did your doc want dosage similar to Linn's? 270 off the bat (so that would be 3 of the 90mg shots right?) then 90mg every 8 weeks after that? At that point one could expect around 120k for the first year if paying out of pocket? Am I doing my math right?

kdgi- Thanks for the update! I am so glad it is helping you and you are finally getting some relief. Please continue to let us know how you are doing. It is looking like Stelara might be the next up and coming thing to treat this pain in the butt disease and I am very eager to hear your experiences with it. Have you noticed any side effects so far? As far as "off label" , it just means that although stelara has not been FDA approved for the treatment of crohn's disease my doctor wants to prescribe it for that reason because it has been shown to be beneficial in other patients with Crohns. It's just like how they give some seizure medicines to people with migraines because it helps. It is just harder to get the insurance to okay it since it is not yet approved for that use. In regards to the price of the shots 5k is a lot less than the around 13k that Ian was quoted. Were you offered some kind of discount program?
 
L

Linn

Ian2390 said:
Off label. My insurance paid. It would have cost $40,000 for 3 90mg shots.
Click to expand...
Hey Ian--what dose are you getting? Are you doing a 270mg induction, or are you doing 90 mg at week 0, 90 mg at week 4, and then 90 mg every 8 weeks thereafter?

thanks!
 
L

Linn

Hey David,

This isn't for Crohnie's....you have to be taking it for the FDA-approved indication, aka psoriasis. So no dice there. Thanks for thinking of us though!
 
raechel

raechel

David- Great minds think alike I suppose... I didn't read the fine print and called their 800 number today. They said the same thing..not for off label users... bummer. Stelara customer service was also unable to give me any info. related to use for crohns patients, or cost of the medicine period. Oh well, it was worth a shot right? (Pun intended ;-)
 
L

Linn

Hi All--

just an update, my claim was rejected by my insurance company. We're applying to the Johnson and Johnson Patient Assistance Foundation while we appeal. So frustrating. Can't stop crying. I hate this disease.
 
raechel

raechel

I'm sorry to hear that Linn. Have you contacted the foundation to see if as a crohn's patient you are able to apply? I just thought it was worth mentioning the rep I talked to said assistance was only available for people with scripts for approved uses and not off label such as Crohn's. :-( I was pretty ticked off. But, who knows maybe it is just like most customer service numbers you call where depending on the person you get a completely different answer. I don't know how much paper/leg work their is involved in application but I just wouldn't want you dedicating a ton of time to it if there is no way they can help... Hopefully my rep was wrong and you will get better news... good luck.
 
raechel

raechel

access2wellness by Johnson and Johnson... 1-866-317-2775 was the number that I called. I have been looking online though and am not seeing anything that says that it can't be off label use. I am going to try to call again on Monday and hope for a different answer. Did you call and peak to someone there yet?
 
L

Linn

I actually spoke to someone at the Johnson and Johnson Patient Assistance Foundation, who said that it doesn't not necessarily have to be for an on-label use, and is considered on a case-by-case basis. The number for them is 1 800 652 6227.

Your information makes me worried because Access2Wellness is associated with JJPAF. Thanks for letting me know. It's looking pretty hopeless.
 
raechel

raechel

Thanks for that number so I can try them as well. That is encouraging that she said it may be a possibility! I am feeling fairly discouraged myself. I have been trying to get a stem cell transplant approved, but just received the final appeal denial on that. So, now I am trying to get the stelara approved and my doctors office is saying "the insurance is being difficult with stelara" but I haven't got a denial yet... I'm not too optimistic though. The best we can keep do is keep trying right? Please let me know if you find any additional info. and I will do the same. Maybe together we will find something!
 
I

Ian2390

Stelara Update

I took 1 90 mg shot and take my second 90 mg. shot in 22 more days. Today is day 8 since I took the the Stelara shot. I seem to have less bowel movements since the shot, but I still have bloody diarrhea more than 8 times per day. I was more tired than normal last week but am less tired now.

My doctors diagnosed me with Crohn's, but every biopsy I get just says colitis. I have never had any pain, just bloody diarrhea. Does any one else get these symptoms? I tested positive for MAP antibodies by Dr. Nasser at the University of Central Florida, although so far they say I don't have an active infection. IL23 is supposed to help the body protect against intracellular infections like MAP, TB, etc. I also sent a spit sample to 23 and Me to test my DNA. 23 and Me said that I have an IL23 SNP that results in a 2 times increased risk for Crohn's versus people that don't have this SNP.

With all the money pharmaceutical companys making selling drugs like Stelara ($40,000 for 3 shots), Dificid ($150 per pill), TNF Alpha ($10,000 per shot) you would think they could dedicate more money to basic research to understand the cause of these diseases.
 
Ian

Ian

Location
London, UK
Same name, same symptoms lol. Yes I get bloody D, or pass lots of blood and mucus separate from semi-formed stool if the inflammation is limited to the rectum and sigmoid area. The only pain I normally get is rectal. Abdominal pain is rare for me - usually only happens when a flare has gotten more severe. And I too have a questionable diagnosis - hoping it's UC or TRULY 'indeterminate' colitis (which is, essentially, a 3rd kind of IBD that is neither UC or CD), but I'm pretty sure when they figure it out, Crohns will be the diagnosis. That will just be my luck.

The pessimist in me says that all the money they're making of drugs is the exact reason there ISN'T more research going into understanding the cause of these diseases (although there is work being done). Who wants a cure when you can make billions off the treatments?

I hope Stelara works for you. I wish I could try it myself.
 
raechel

raechel

Linn- Thanks a million for that number! I called it today and got a completely different answer than from the number I had originally called. They told me that it doesn't matter that it is off label use! Since I do have insurance they will just have to verify that the insurance company is not covering the medication. I am planning on taking the application to my doctors appointment on Wed. to have my doctor fill out their portion and then mailing it in. I was also excited to hear that after they receive all the documents they make a determination in 2-3 business days. Maybe there is hope after all! :-D
 
raechel

raechel

Prayers... now that I can do! Rooting for u as well. Will let u know how thing go with GI on wed. I am at rheumatologist for first time ever now for my arthritis pains...hoping he may have useful insight to stelara as well
 
raechel

raechel

Thanks David! :)

As far as my rheumatologist appt. I didnt find out anything useful related to the Stelara. He said he had never heard to Stelara for Crohns. :-( Hopefully my GI appt wed. will provide more answers.
 
I

Ian2390

Had my first nightmare that I can remember last night. Probably because it was the first night I have slept through the night in many years. Day 10 on Stelara and still continuing to improve.
 
I

Ian2390

Getting ready for my second dose in 1 week. Still have blood in my stool, but am sleeping through the night about 2 of 7 nights, versus getting up 3 or more times a night. I think Stelara is working and am looking forward to my next shot. I wonder what a bigger initial dose might have done - they give 270 mg. in the clinical trial, I only got 90 mg. Going to Berkeley as a freshman next year, optimistic for the first time that I will be able to live in the dorms in spite of my bathroom habits.
 
L

Linn

Got my first dose today. 270 beautiful mg....one in each thigh and a third in my tummy. LET THE HEALING BEGIN.
 
raechel

raechel

Linn- Did the pt assistance program pay for the shots then? Or did insurance approve after all? So happy and optimistic for you! How often will you be getting the shots?

I got my insurance to approve for me after a lot of back and forth, but they are only wanting to do 90mg initial dose, and 90mg every 8 weeks after that. That is half of what my Mayo clinic GI wants me to get :-( She recommended the 270 starter dose and 90 every 4wks after that. I am doubting if only every 8weeks it will have any chance of being effective?
 
I

Ian2390

Raechel, I took 90mg day 0, 90 mg day 30 and 90 mg every 90 days and it has helped me alot. Hope you have the same luck.
 
L

Linn

Hello all! It was not the assistance program but my insurance that wound up caving after we appealed.

I got 270mg the first dose, and I'm slated to get 90mg q8wk thereafter. Right now I'm 9 d out from the first dose and I feel pretty good. Haven't taken MTX in three weeks, and took only 30mg of pred. Last night I had vietnamese for dinner and i only pooed once today!
 
raechel

raechel

Ian and Linn- thanks for the updates! I'm so happy for both of you to be getting some relief!

I was supposed to get my first 90mg injection last week but I have a nasty sinus infection so we are holding off until that is gone. Hopefully I will be getting it this week.
 
raechel

raechel

I just got home from my first Stelara injection. It was quick and painless. I am pleased that it did not sting like Humira and Cimzia did. :) I have been having a scratchy feeling in my throat and my face is flush and hot, but I'm not too concerned that it is a real problem because this has happened with some of the other immune suppressing inject-ables and never turned into a full blown allergic reaction or anything, so maybe this is just how my body reacts to these drugs... who knows. Other than that so far I feel normal. I am not wiped out exhausted like I have been immediately after in the past from some of the other drugs... not yet anyways.
Did you guys have any side effects after taking the stelara?

Fingers crossed I start feeling some relief soon!
 
M

Missmidgeymoo

Hey all! Great to come across some people on Stelara!! I've been offered it off label & know no one on it! Have any of you on it got arthritis too? As i'd love to hear if stelara is any help with this aspect? Or can you throw another med into the mix with Stelara to help with this? Have you who've been on it "failures" on the anti tnf's? From what I read it seems to help those who haven't been helped by the standard ant tnf biologics, like myself!!
 
L

Linn

I felt better w/in 10 days.... I started to notice my bowels slowing down and the bleeding subsided. But it's gradual. I also got a loading dose so that might be why....I was also taking 40mg pred at the time. And continue to take pred, though im thrilled to report that I'm on a week of 15 and 20mg alternating days and then attempting a whole week of 15 next week! Hang on raechel....
 
raechel

raechel

Thanks Linn for the encouragement. My doc is thinking its possible the Stelara is having a negative effect on my body because it may be allowing my abscesses to act out by suppressing my immune system... thus causing the extra pains. But, we are going to try to wait it out along with Levaquin to fight the infection and see how I'm doing. For now, I'm still going to stay the course with the Stelara, but with the next shot still a little under 3 weeks away who knows if things will change by then.
That's exciting you are weaning off the Prednisone and doing so well. :) I am so ready to be off the prednisone too. I have the text book moon face, and weigh way more than I ever have in the past despite still being ill.

Missmidgeymoo- I have athritis too. Oddly, my body seems to be the opposite of most though in that when my crohn's is really acting up my arthritis is better. So "luckily" the arthritis hasn't been bad the past month or so, so it is hard for me to say if the stelara has or will have any effect on the arthritis. I've only been on the Stelara for 8 days now. I am on it because all other meds have failed me. As far as the anti-TNF's I had some success with Remicade for a few months and Cimzia helped me a little at double the dose, but never enough I was in remission. I have read the same thing about Stelara being useful for people like us and am hopeful it will work.
Good luck to you!
 
raechel

raechel

I'm a little less than 3 weeks in and so far no real changes. I did have a great day this past Saturday, but that seems to be my norm. I usually have a really crappy week or two and then get one or two decent days before I start all over again with the bad... seems to just be a cycle for me. The good news is that abscess wise I seem to be doing alright now and have been able to finally stop the antibiotic I was on for over 3months.

How are the rest of you doing now? I'm dying to read an update :):heart:
 
L

Linn

hi!

doing well after a little setback last week. I was down to 12.5 on the pred and I think I got a little ahead of myself. I was fine during the day last Sunday, but sunday night my guts came unglued and i had some serious D.

Thought it was a flare but it seems like it might have been a bit of a stomach bug as my boyfriend came down with it too.

At any rate, currently at 17.5mg and the poops are hardened up again...even more formed than they EVER were on tysabri. i think if you've been on pred for 16 months at 40mg like me, a slow, gentle taper is key. probably not more than 2.5 mg a week once you get below 20.
 
skippy111

skippy111

THe news article David posted on the first page did indicate that the Stellara did seem to be effective against the Chron's even more interesting is that people who could not tollerate the Humira did well with the stellara,

but, there again, the market share of the Chron's patients is somewhere near $3 billion dollars so it is understandable why the other approved meds would lobby to protect their own market share..

I hope this works out.
 
raechel

raechel

Quick update on me... After my second injection I may have had an allergic reaction. I'm not really sure if it was enough of a reaction to keep me from getting another shot though. My eyes got really itchy, my tongue itched and throat just felt very scratchy. I took Benadryl and prednisone and it helped a lot. About 45 mins later my eyes and tongue were fine, but the itchy weird throat persisted. I actually woke up the next morning with my throat just feeling very dry, scratchy, and irritated. Within 2 days I had no voice. I went to my primary doc and she said it was possible the loss of voice was related to the swelling and irritation from the reaction. It is also possible that it was all a coincidence and what with being on an immune suppressor I just had a virus or something that happened to hit me then. I did not have any other symptoms sickness wise, no headache, fever, achy-ness.. ears and nose are fine...It is worth mentioning though my throat was snot at all irritated until after the shot . I had my voice back about 6 days later, and now I am 10days post injection and my voice is fine but throat is still a bit irritated and if I talk much it is worse. Any thoughts? Anyone else having issues after the shot like this? (I also woke up yesterday with a cold sore and havent had one of those in over 3 years so I'm thinking maybe the stelara is doing its job zapping my immune system.)

Overall my Crohn's symptoms have improved, but are not amazingly better.

How are you guys doing???
 
I

Ian2390

update on me. My Crohn's is not significantly better after 2 shots. I still have bad D and blood in every stool. Will probably take my next shot but don't think this has really helped after being on the drug for 3 months. Might try IV steroids to see if that will put me into remission before my next shot. I am convinced I have an intracellular bacteria or virus that has not been diagnosed. When I get to Berkeley I am going to find a lab that works on this and start testing myself.
 
S

swing9cats

Location
seattle,
Hi, I am currently in the Phase III Stelara study. I've noticed a HUGE difference. I have failed Remicade previously by having a horrible allergic reaction and I was afraid to take biologics. But I'm glad I did bc my CDAI score has come down and I would say I'm nearing remission (kissing the ground the doctors walk on at this point). I honestly felt like I was dying.

The first dose was an IV so that I wouldn't know if it was drug or placebo...I'm almost sure I got the real deal.

I had to wait 4 weeks for another injection, and I get one every 4 weeks. At least once every 12 weeks I do get the real drug. I've now had 3 injections and I've been part of the study since March. Its a 4 year study. All I know is that I improved enough to pass to the second part of the study and things are looking up. My score came down from 226 to 99. I went from going to the bathroom in excruciating pain nearly 15 times per day to only going once. Maybe twice. No pain. I do feel though I have nerve damage bc I still have pain to the touch of my back where my intestine is and I do continue to take pain meds.

I am looking forward to stem cell therapies and studies. I hear good things about Prochymal which should be hitting in a few years.:dance:
 
M

mommy1st

My doctor is in talks with my insurance for approval for Stelara. I have tried Remicade in the past with a severe reaction ( serum sickness ) and have been on Humira weekly for the past few years. My Crohns has always been pretty severe, they are trying to heal things up so that I don't have to have my 5th resection. Just wondering if everyone feels like Stelara has helped more than not at this point. I'm just looking for a little advice. Thanks!
 
S

swing9cats

Location
seattle,
I absolutely feel that Stelara > Remicade It is getting me closer to remission with SO few side effects if any. I had an extreme allergic reaction to Remicade and also ended up in the hospital several times with infection and Pneumonia. If you check on WebMD and compare the side effects its almost astonishing. I was so scared of taking another biologic after remicade. I only agreed to the study because I was SO sick, the next step truly would have been to remove my colon. I was so scared at the infusion time, that I basically had a panic attack...but the only thing I noticed when I know I received the real drug, is that I felt a little tired and weak with flu like symptoms for 1-2 days post injection. After that, day by day and noted in my journal that I keep, my frequency became less and less, also pain was becoming less. The rest is history. I have had zero problems on the drug. I plan to continue using it. Now on it since March so around 5 months.
 
raechel

raechel

mommy1st- I go through ups and downs thinking the stelara is working, and thinking its not. Overall I would say my symptoms have improved. I feel a little sleepy after the shot, but not nearly as bad as I did with the Remicade. I'm definitely glad I gave Stelara a shot, but I do have to admit I worry that I'm allergic to it and kinda scared for my next injection. If this is the next thing your doctor is recommending and you can get it approved by the insurance I'd give it a chance if I were you. :) Good luck.
 
M

mommy1st

Thanks for the info, honestly if I wouldn't be working on my 5th resection I would probably have just opted to have surgery, but at this point I think that I will give the Stelara a try, well if my insurance will pay for it!
 
S

swing9cats

Location
seattle,
I'd have to agree with Rachael....I go through these ups and downs, but over all I am significantly in better shape than I was in March. In March I was going to the bathroom 6-10x per day...now I am going 2-3. I have far less pain and was also able to finally get off of prednisone. I wouldn't say I am in full remission as I still have some pain, but its far more manageable and if I watch what I eat, I can have symptom free days. I would highly recommend it while waiting for the next best thing. I am concerned about building up anti-bodies to it and it not working, but so far so good. Additionally, I asked what the next steps were if the drug were to fail...and there is a Vido study, and also a "worm" study (I'm sure most of us have read about eating the worm pills that make the gut lining increase mucosa etc...). In any case, I am pretty satisfied with Stelara and feel on a rating of 1 to 10 (10 feeling great), I feel about a 6 or 7...which is far better than the 2 I felt before. I'm not really bleeding although I do have those occasional days...and it is usually from either high stress levels or bad foods. I'd give it a shot if yoru doc. recomends it.
 
S

swing9cats

Location
seattle,
I got my first dose in March. I as I am part of a study I'm not 100% sure when I get it...but I get an injection monthly, of which 1 in every 12 weeks is the real deal. So I started end of march until now..so about 6 months. Its not overnight...
I also felt "flu like" symptoms after the real injections, I thought...with a lot of fatigue and nausea. Also my feet felt swollen and stiff...but in the big scheme of things..thats really nothing compared to the misery of Crohns. I'd take that any day, adn its nothing that a bit of tramadol can't help ;)
 
Lawyerboy

Lawyerboy

Ok, so it is difficult to pinpoint when it exactly began working for you I guess. I am also on prednisone now and i need to taper but can't. Hopefully Stelara will help.
 
S

swing9cats

Location
seattle,
Yes...that sounds about where I was when I got started. It will take longer if you don't start thats all I know. I was really greatful to get off of the devil drug prednisone over time. I know I felt a lot better in the first three months. I was very weak/tired after the actual drug I thought. Good Luck!! Crohns is a B*%@!. Keep us posted on your progress.
 
Lawyerboy

Lawyerboy

Yes I know. Prednisone is helping me alot though. If I could not have prednisone I would be much much worst as I am currently. The side effects however are horrible, especially the psychological side effects. I will keep you posted!
 
L

Linn

Hey guys--
just wanted to send a little update.

So I've had two doses so far--one of 270 mg, and one 90 mg (that I gave to myself last month).

Well, I've put on 23 pounds of not-just-water, so that alone speaks volumes to how i'm feeling. I have a tendency toward nasty scar formation (i've already had one resection to remove 12 inches of bowel and stricture) and I can feel another one coming on with all the healing that's happening.

In spite of the healing, however, I'm still on 7.5mg of prednisone. I can't seem to get much below that without being symptomatic to the point of annoying (i'm a medical student, so not a lot of bathroom breaks, and a lot of time spent standing). I have an appt tomorrow with my GI--hopefully she'll agree to scoping me, the last time we did that (before the Stelara, in April) the scope itself was enough to treat the stenosis.
 
Lawyerboy

Lawyerboy

Hi lynn, sounds like the stelara is working for you. Thats great right? What improvements did you notice besides being able to taper?
 
kromom1

kromom1

How often is Stelara given, and is it an IV infusion or injection? I've been receiving Tysabri infusions every 4 weeks now for 18 months, and it's not working very well anymore, so I'm considering trying Stelara.
 
L

Linn

Hi! Well, the improvements are systemic. For starters, I have tons more energy because I'm absorbing more of my food. It's not perfect--I have a bit of stenosis pretty low down which I'm getting dilated on monday, and as a result my bowel is a bit irritated right now. but stelara + 10 mg of pred right now = as close to a normal life as i could ask right now as a 4th year med student :)

its when i start to try and go below 10 that things get a little shady. it might be because i haven't reached steady state yet with the stelara, given its fairly long half life, but i have another dose coming up the first week of september so we'll see after that how low i can go.

the improvements really center around my being able to taper. when i'm on prednisone over 20 mg, my vision is terrible and i have to wear glasses because i get so blurry i can't even identify my friends coming down a hallway. i'm not crying my eyes out every 20 minutes which makes my boyfriend happy. and i'm not bloated up like a big puffy toad. i also stopped taking MTX which is nice because a.) i was going bald and b.) i was getting pneumonia every three months because i spend all my time in the hospital and am constantly exposed to tons of germs. i can tolerate the immunomodulation that stelara causes, but the MTX was just too much for me (my cough was so bad for so long that most of the attendings thought ii had TB) its better for my bones (and every organ system, really) to be off the pred so tapering is kind of ...everything, hehe.

one thing of note is that my fistulas are trying to heal, even without antibiotics. i was taking high dose flagyl and cipro for many years up until may, when it finally caught up with me and my feet went numb up to my shins. well, not numb per se; parasthesia is a better description. that is improving too now, which means it was the reversible type, which means it was due to the flagyl since cipro-induced neuropathy is irreversible. so we may try again with abx, just at a lower dose. but the fact that the fistulas are trying to heal--or even just not getting nastier--is a pretty huge check in the win column for me as well.
 
Lawyerboy

Lawyerboy

Hi linn, thanks for replying. I am so glad for you that you have relief with the Stelara. Our situations seem pretty alike. I also have a sticture, in fact I have two. One in the transferum and one in the decending colon. And I am also a student not being able to taper the pred. I am on 40mg now and below 30 I would say I am not able to function at all. Today I am getting scoped again and I will hopefully also be getting my first dose of Stelara (no placebo I hope). Good luck to you and I am sure the dilation will do the trick. Strictures are awful!
 
Lawyerboy

Lawyerboy

Just had a scope. The GI confirmed that my strictures are completely dissolved. I still have to endure severe bloating though; it is difficult to actually believe him.

I also got my first IV of Stelara or placebo. I experienced a somewhat metallic taste in my mouth during administration. Hopefully this implies I got the real thing!
 
raechel

raechel

Thanks for the updates! I love reading how it is working for everyone else.

I had a period of about 2 weeks last month where I thought the Stelara may be helping, and I had a decent MRI, but then my normal crohn's pains returned so we repeated the MRI (enterography) last week. I just got the results. They are saying that my fistulas appear to have healed and there is no evidence of the abscesses (that I've had for quite some time). Inflammation wise, etc. the Crohn's appears to be worsening though. It is so weird, but matches how I'm feeling. My doc was hoping to get me tapered off the prednisone this month too, and is not going to now. I'm only @10mg so I guess I shouldn't complain to much. I'm just so tired of these tremors, mood swings, moon face, and feeling so HUGE. (Despite my daily sickness I am 25lbs over my normal weight). Plus, I thought a benefit of the prednisone was supposed to be energy, and I am not reaping that benefit at all. I am SO exhausted all the time.

Stelara was kind of my last try medicine wise before I decided to go all in for a stem cell transplant. (Insurance denied, but if I receive medicare in January like I should then they cover a large portion, and I am currently fundraising for the remaining amount). I'm glad it has done what I really needed to prepare me for transplant in getting rid of the fistula/abscess problem... but at this point I'm pretty decided that's about all its done for me and going to do everything I can to raise the $ for transplant. (Especially since every time I get the Stelara injection I have a slightly worse reaction and have to do a medrol pack and benadryl to keep my throat open...and I'm unsure if it is related but the last 4 days I have had headaches that keep me from functioning at all.. a dull headache all day long, and then random stabbing behind my right eye that makes me see spots... and the only thing that makes it better is laying down)

Sorry if this seems scatter-brained.. I feel like that's just me anymore,lol.
 
L

Linn

raechel, i'm really sorry to hear about your struggles. things haven't been smooth sailing for me either recently. i started having a lot of obstructive symptoms, and went in for dilatation. while they didn't see more inflammation than my scope in April, it wasn't exactly a gorgeous scope by any means...I have involvement right up to my anal verge now, which is as gross as it sounds (basically I don't have to go until the poo is ALLLL the way down and irritating the sphincter, at which point, I have basically no time to hold it) and even though I too am only taking 10 mg, I still haven't recovered from the bowel prep--so theres no sign of lowering any time soon.

My next shot is tomorrow. I was looking on pubmed for the pharmacokinetics of the drug and I actually found a pretty interesting article that states that the half life of the drug is different in different people--like, way different. http://www.ncbi.nlm.nih.gov/pubmed/21084039
its weird because both times, i felt LOADS better soon after the shot--but then at around 5 weeks or so, the affect seems to wane.
 
raechel

raechel

Linn- That is interesting what you found about the half life. I tried to go to the link you posted but I think it was just going over my head. I'm sorry to hear about your latest struggles too. I have been feeling better for the week or so after my shot, but it's hard for me to tell if it has anything at all to do with the Stelara or if it's just because I'm taking a medrol pack to ward off the allergy to the stelara. Personally, I think its just the short term boost in steroids that gives me the short term relief.
I noticed you said after 5 weeks the effects wane... how often are you getting the shot? I thought it was monthly like me?
 
Lawyerboy

Lawyerboy

How are you guys doing on stelara?

I have gotten two infusions of ustekinumab since the start of the trial and the inflammation in my colon totally disappeared; moreover the inflammation in the terminal ileum is reduced to almost zero. I still endure daily pain and bloating though. My GI does not have a clue what is causing it. Very very frustrating :(
 
raechel

raechel

Lawyerboy- I can sympathize. It is so frustrating to have tests not match what you are feeling. I had some tests show improvement with the Stelara, but wasn't feeling better and it was driving me nuts. I wanted to feel excited that things appeared to be improving, but without feeling relief of symptoms I was just confused. My latest test showed that while the Stelara is helping some affected areas, others are worsening. The good news is it has taken care of the abscesses I had and kept them away.
Also, each time I get the injection I am having to do a medrol dose pack to counter act my allergic reaction. As we speak I am 10days post injection, finished with the medrol pack, and now covered in tiny little red itchy bumps on my face, neck and chest, and larger bumps/welts sporadically on my body. The steroid cream the doc. gave me seems to be helping though.
 
Lawyerboy

Lawyerboy

Hi Reachel, glad to hear that Ustekinumab seems to be working for you. How much Prednisone do you take a day? Did you manage to taper? If so, how did you taper?

Hi David, thanks for the SIBO suggestion. However, I feel my pain is coming from my colon. That would rule out SIBO right?
 
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David

David

Co-Founder
Location
Naples, Florida
I was thinking more along the lines of the bloating may be due to SIBO rather than the pain. If you don't have any active inflammation they can find, it may explain things.
 
raechel

raechel

Unfortunately, if I had to say today if the Stelara is helping, my answer would be no... having said that, other days I would say maybe... so who knows.I have been tapering 2.5mg every 2 weeks, and I am down to 5mg now. I have been pretty miserable symptom wise all weekend though. Going from 7.5 to 5 has been tough-ist, but my doc. is insistent that I get off prednisone at least for a short time even if it means an increase in symptoms.
 
Lawyerboy

Lawyerboy

Raechel, how long are you on prednisone? Me 8 months.

I just returned from the ER because the pain and bloating is becoming unbearable to live with. The GI and surgeon I saw today both think bowel adhesions are causing my problems; I might face surgery on the short term :s
 
raechel

raechel

I think it has been about 10 months this time around (although I think I have been on some amount of steroid more often than not in the last two years.. heck, in the last 6 years I don't know that I've had more than 3 or 4 consecutive months with out steroids).

I'm sorry to hear you are having so much pain. So the tests are showing improvement in inflammation, but you are still having a lot of pain? Are your symptoms similar to what they have always been? I am not familiar with bowel adhesions. Are yours caused by previous surgeries?
 
Lawyerboy

Lawyerboy

I was scoped last Thursday and 99.9% of the inflammation is gone, either due to the meds or the scdiet I am on, or both. The pain I have however never subsided, thats why I started to think adhesions might be the cause. The GI and surgeon both agree. I think the adhesions follow from the severe Crohn's inflammation; I had major surgery in 2003 though.
 
Cupcake

Cupcake

I am waiting for approval on the study right now. Ive failed Remicade, Humira, steroids, asacol. Hoping this will be the one!
 
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