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04-21-2012, 09:14 AM   #31
raechel
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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.
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
04-21-2012, 04:59 PM   #32
Linn
 
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Raechel....which foundation are you referring to specifically?
04-21-2012, 05:40 PM   #33
raechel
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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?
04-21-2012, 06:15 PM   #34
Linn
 
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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.
04-21-2012, 07:57 PM   #35
raechel
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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!
04-22-2012, 02:08 PM   #36
Ian2390
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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.
04-22-2012, 02:23 PM   #37
Ian
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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.
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Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
04-23-2012, 08:54 AM   #38
raechel
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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
04-23-2012, 08:55 AM   #39
Linn
 
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I am so glad you called and got that same feedback. Let's pray Rae. I am so rooting for you.
04-23-2012, 01:18 PM   #40
raechel
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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
04-23-2012, 01:21 PM   #41
David
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You two have plenty of others rooting for you as well

04-23-2012, 02:17 PM   #42
Linn
 
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Thanks guys. App faxed. Fingers crossed.
04-23-2012, 04:47 PM   #43
raechel
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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.
04-24-2012, 01:32 PM   #44
Ian2390
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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.
05-02-2012, 08:46 PM   #45
Ian2390
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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.
05-10-2012, 07:53 PM   #46
Linn
 
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Got my first dose today. 270 beautiful mg....one in each thigh and a third in my tummy. LET THE HEALING BEGIN.
05-10-2012, 09:52 PM   #47
David
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That's great Linn! I hope you feel better soon!
05-11-2012, 12:01 AM   #48
Ian2390
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Good luck Linn. I feel much better and am looking forward to my second shot this weekend.
05-11-2012, 10:23 AM   #49
raechel
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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?
05-11-2012, 10:35 AM   #50
David
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Something is so very wrong when an insurance company dictates treatment over a doctor.
05-11-2012, 12:37 PM   #51
raechel
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David, I couldn't agree more.
05-19-2012, 01:25 AM   #52
Ian2390
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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.
05-19-2012, 10:33 AM   #53
Linn
 
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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!
05-19-2012, 06:53 PM   #54
raechel
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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.
05-24-2012, 03:35 PM   #55
raechel
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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!
05-24-2012, 07:47 PM   #56
David
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Good luck Raechel!
05-30-2012, 08:50 AM   #57
raechel
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Hey guys.. I'm not feeling so hot. How long after your first shots could you tell a difference?
05-30-2012, 01:12 PM   #58
Missmidgeymoo
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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!!
05-30-2012, 08:24 PM   #59
Linn
 
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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....
05-31-2012, 08:15 AM   #60
raechel
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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!
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