Any Stelara users?

I'm having my final Entyvio infusion mid-Feb. No response at all:(

One of my GI's is suggesting I try Stelara. Anyone else on it?

Thanks

keith, i thought you were doing well on cimzia, what happened? Didn't you have good luck with remicade for quite some time? I was a total non-responder.

Marianne, I think he mentioned having his diagnosis changed from UC to Crohn's, maybe that is why a biologic would help? If it''s bacterial, would a FT help? I think he said he already does megadoses of probiotics.

notsosicklygirl said...
keith, i thought you were doing well on cimzia, what happened? Didn't you have good luck with remicade for quite some time? I was a total non-responder.

Cimzia works for me for about 10-12 days then my symptoms flare back up. I need Cimzia to work for the whole month, I'm not sure if they'll approve a double dose.

I've taken 5 doses (3 loading) and two regular doses. I'm calling Cimzia a failure for me.

Remicade worked great for me (almost 5 years) but I developed a reaction to it and had to discontinue it. I tried Humira and Simponi but I got the same reaction plus they didn't even touch my flare.

If I can't get Stelara approved then I will probably start Entyvio. I'd like to try to get off of antibiotics; I've been on them for about 18 months.

I have to schedule an appoint with my GI to discuss the next step.

ByeByeUC said...
I am curious to know and still don't understand how a biologic helps pouchitis. It's bacterial. (Or so they say)

Sorry UB tough...I don't want to sidetrack your thread .... I was just curious about Keith's post.

I've heard it said if you have chronic pouchitis then you likely had/have crohn's disease and not uc (large intestine is removed yet inflammation persistent in small intestine, the j-pouch). The reason pouchitis responds to biologics is the same reason it helps uc or crohn's patients, it's an effective treatment for the symptom of inflammation within the intestine.

My GI got the Stelara approved by my insurance company this week for off-label use. I have an appointment with him for March 11th, they will give me my loading doses at the appointment.

I'm not sure how long they expect it to take for the Stelara to start working for me, I will bring this up with the GI while I am there.

I'm not sure what dosage I'm getting because Psoriasis is half the dose of what a CD dose is, I'm not sure what dosage was approved from my insurance company because this was all done over the phone.

Most of the doses for biologicals for Psoriasis are less than the IBD doses, like Remicade, Humira, Cimzia, etc.

UBT,

I took my first loading dose on March 11th, with about 48 hours I was in complete Remission, my pouch was easy to empty, no gurgling/noises and I had more energy. I was sleeping great too.

I felt great but after about 7 days the Stelara stopped working, it was like I hit a wall. So back on the Antibiotics I went and I got things under control. The only side-effect that I had was itching but that went away after I took Claritin for 2 days.

The shot is painless, they use the same pen as Simponi. I felt a slight warming after my first shot for about 2 hours near the injection area in my leg. I'm normally tired 24-48 after administering one of the biological meds (injection or infusion) but I went about my day without any issues.

Last night was my 2nd loading dose of Stelara (the final loading dose), I moved it up a couple of days because I am having company this weekend and didn't want any issues if I had a reaction to the Stelara. I woke up today and felt great, my pouch is working great just like after my first injection.

My concern is that my next dose is 3 months from now and I'm not sure if it will last that long because of how fast/abruptly that it wore off after the first shot. My GI said that we might have to tweak the dosing on Stelara because it has only been approved for Psoriasis and IBD patients will most likely need a stronger dose, he said double doses or an IV they do for some of the IBD patients.

Now for the staggering amount that they charge for Stelara, Caremark bills my insurance company $17,697 for a single 45 mg dose of Stelara, my insurance pays $8,292 for it which would annually be $33,000 a year after the loading doses.

What you described does sound like "ineffective" to me. It sounds like you had a very good/quick response that was very short-lived. It sounds hopeful at least. When I say ineffective, like remicade was for me, I mean ZERO response. Symptoms continued and actually progressed.

@UB

Doctor Borody uses both Anti Map and Triple ABX together. Here is a link where your GI could try and contact him to ask about both. Make sure they mention your PG r PE (I forget the abbreviation) if you can even get them to call.

www.cdd.com.au/pages/clinical_staff.html

wahoo217 said...
Hi Keith,

Just wondering if you've taken another dose yet? I will be starting Stelara in 2 weeks and am TERRIFIED. It's not easy finding other people on this medication for Crohn's/UC so I'm very interested to hear how you're doing!! Thanks!

I'm taking the double dose every 8 weeks; the next dose is June 24th. I ended up with a fever last week and Thrush from all the antibiotics so my system right now is in total flux so it's hard to give a fair assessment of the Stelara.

I will tell you that my 2 biggest complaints about my symptoms before starting Stelara have gone away, noisy stomach and hip pain.

I'd recommend that before you start that you discuss the dosing with your GI, it seems that the Psoriasis dosing isn't that effective for CD/UC. You can also increase the dosing frequency, I've gone from 12 weeks to 8 weeks.

Wahoo217,

I'm just waiting for the test results to come back but I most likely have C.diff, I'm not sure how long that I've had it because I've been on Antibiotics for most of the last 22 months. I stopped all the Antibiotics and then fever and liquid stool started happening.

I've had reactions to the Anti-tnf meds, Remicade, Humira, Simponi and Cimzia. So I'm happy with Stelara, no reactions other than being itchy that went away with some Claritin. The injection is really easy, the spring releases when you are done and the needle retracts.

I haven't participated with the Medical Marijuana because I get drug tested at work.

They are doing clinical trials for CD and Stelara based upon weight, 45 mgs is very very small for IV clinical doses. Based on my weight I think it would be around 500 mgs.

wahoo217 said...
Wow..Thanks Keith. How are you feeling now? I just had my first injection this morning. I feel a little spacy, but not sure if that's because I'm a little tired?

I felt tired and a little burning at the injection site but I managed through the day; normally after an Anti-tnf biological I'll need to go to sleep so the Stelara is better for me. I haven't had any issues with injections after the first one.

Also I got really itchy after my first injection, I took some claritin and it went away.

wahoo217 said...

I've had some reactions to the Anti-TNF's but not all. I was on Humira for a long time-- maybe over 5 years? but it just wasn't cutting it. Still was having issues. I've tried Remicade and Cimzia as well. I think Simponi is for UC and since I have CD, it really wasn't a good option for me. So here I am. Trying to stay positive, but it's definitely not easy. Please keep me posted on how you're doing.

I received 45mg injection today and then I THINK I'm getting 90mg 4 weeks from today and then the injection will be ever 8 weeks. FINGERS CROSSED!!!

My C.diff test came back negative but the GI said that could have been an issue with the stool samples not being fresh enough (I stored them overnight) but he said that I had c.diff because my issues have gone away after starting Vanco.

Any improvements after the first 24 hours? I felt good the next day after my injection, I was in remission but my flare (pouchitis) isn't that bad, I am just trying to get off of Antibiotics.