Stelara

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Well, my blood labs came back & I'm officially in a flare. GI is upping my Stelara to every 6 weeks now. Of course Alberta Health won't pay for it so the drug company is donating every 2nd dose.
 
agozal said:
Hey guys, my name is ali and I live in turkey, since crohn is not common in here i have been visiting u.s every 3 year for medical treatment. i was using remicade for almost 8 years with not side effects and under remission, 4 years ago we doubled the dose and 3 years ago we highered it %25 more, so i was taking 12.5mg/kg until 2 months ago, which was my last dose. we found some antibodies on my blood against remicade and my doctor decided to start me on stelara 10 days ago.

I took my first stelara shot 3 days ago, 6 shots of 90mg which is equal 6mg/kg. I still have some reduced sweets and cramps during the day but it gave me a lot of energy and put me in a good mood again. My GI told me that the IV Stelara effects faster then the injection, so i should wait 1-2 weeks for stelara to kick in, since i used the injection type. Also my GI told me that Stelara works better with the patients who were successful with the Anti-TNF drugs. I am on pred also and reducing the dose every week, so i will be done with pred in a month and start Imuran for only 6 months, to help stelara work better.

I will keep you guys updated.

By the way Stelara costs 2.000 usd for 90mg shot in turkey, i paid a lot more less with some discounts for 6 shots.
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Hi Ali, Thanks for the helpful info. How are you doing? Did the loading dose kick-in? I'm considering Stelara. Thank again.
 
Has anyone started Stelara since the FDA approval or prior? I am days away from starting the initial infusion. Built up antibodies to Remicade and then started to have reactions to Humira. Transient joint pain is off the charts....
 
Napali Coast said:
Hi Ali, Thanks for the helpful info. How are you doing? Did the loading dose kick-in? I'm considering Stelara. Thank again.
Click to expand...

So far so good. I was better few weeks ago, my bowel movements raised up a little bit last week, but still i do feel better then before.

Had the best CRP results since 10 years. It was lower then 0.50.

After my loading dose I will take my second shot this week, hopefully things will get better.

By the way it took 4-5 weeks for stelara to kick in, especially it did get better when i also added Imuran at the 4th week.
 
Hello,

I was diagnosed with Crohn's disease in June of 2015, and was put on Remicade with only a bit of predisione until I went into full remission. I also have severe psoriasis and the Remicade is not working for the skin issues. I'm having another colonoscopy done to see how I'm doing, and then we will decide if Stelara is the right move.

Has anyone experienced transitioning medications? If so, how is the transition process? Yes I know everyone is different but I am terrified to get off the Remicade because I am currently getting it every 8 weeks, but by week 6 I am already suffering.

Please feel free to share your experiences! Thanks!

-C
 
Hello All, (RE: STELARA and NEW DRUG NAMED VIVLODEX)

For those of you who are still dealing with significant joint pain, I highly recommend Vivlodex Capsules. I am currently on the 5 mg daily dose and am amazed how well it works. This drug is the capsule form of Meloxicam (Anti Inflammatory),however, the drug has a 'high tech' release which is specific to Vivlodex solely. For me, it works far better than Prednisone and generic Meloxicam. It was initially given to me by my MD Internist as a 'sample' and within 2-3 the drug had taken away my pain. Based on the cost, (it now has a manufacturer coupon card that works with your own insurance, thus, greatly reducing the cost to a co-pay), I tried generic Meloxicam 15mg, along with Prednisone, however, it only worked for about a few days. When I returned to the Vivlodex 5mg capsule (stopping the Prednisone and Generic Meloxicam), my pain subsided in less than 2 days. My doctor tells me that the Vivlodex has a high tech delivery system. Sadly, many doctors including my GI doctor was not aware of this drug.

In closing, I have started Stelara and have received my initial induction 360 mg IV infusion. Accordingly, I will administer my first 90mg injection in less than 3 weeks. To date, the Stelara has not had the immediate relief Remicade gave me when I first initiated it back in 2013. Sadly, I built-up antibodies to Remicade and later reacted to Humira.

As you may know, Stelara attacks specifically IL 12 and IL 23 - and I pray this newly FDA approved drug kicks-in and ultimately changes many of our lives for the better.
 
I received my first Stelara infusion on 10 January. Scheduled to receive the second (injection) in March. I didn't notice any improvement, when did you see some resuluts?
 
ronroush7 said:
Any drug like this can cause bleeding.
Click to expand...

Yes... We all know this... all too well - I too have had my share of blood loss throughout the years. However, the Vivlodex 5 mg works better than Prednisone for me when I am having severe migratory arthritic pain. Thus, I needed to pull that trigger - and its been very helpful!

The Vivlodex has a different delivery system thus, reducing the NSAID bleeding issue in the majority of its users.

I have had my initial dose infusion (noted above) of Stelara and just administered my 90mg maintenance dose... To date, the Stelara has not helped like the Remicade did 'right out of the gate'. However, to date, between the Stelara and Vivlodex I am holding steady and waiting for a good outcome.

I am hoping your Stelara treatments are doing well for both of you.
 
Just an update:
After the loading dose i had my third 90mg dose last week.
It works amazing with Imuran. I am taking 100mg Imuran everyday.
still feeling good, no problems yet.
 
I am starting Stelara, hopefully this week I will get the infusions. Can anyone tell me if you had any ill feelings immediately after the infusion or the next day. I was on Remicade years ago and got very nauseated during and after the infusion and was very tired the next day. I am hoping Stelara is as good as everyone is reporting it to be as I am have ran out of medicines to treat my Crohn's. Any info will be appreciated.
 
I just started Stelera a couple weeks ago and I haven't felt anything. I went to a new GI recently who communicates a little better then my other and he said that meds just don't seem to work for me and surgery is looking like the choice. Not even prednisone as I'm on 60mg now and it's not doing much.

Anyway, I've been in a pretty bad flare as of late but.. and I dont want to jinx it, but... my frequency and urgency has just slightly subsided over the last two days. I didn't even have to get up in the night which doesn't happen.

Anyway, hopefully it's the Stelera.

But no ill feelings from it, no.
 
Thanks for the response Turftech. I know when I was on Remicade I had a little reaction so I was not sure if it was the same.
Although it may be for nothing now because Blue Cross Blue Shield of Texas, my health insurance, has denied the Stelara saying it is not approved for my diagnosis, Crohn's. So now a battle of getting approval. This is another thing that is frustrating. I have to prove that I have exhausted ALL other medications and that none of them were effective and prove that I am "sick enough" to be on Stelara according to Blue Cross Blue Shield and then they deny because they say it is not approved for Crohn's. Someone at BCBS is about 6 months behind. Sorry folks had to rant a little. Living on steroids right now to keep from flaring and can't reduce even by 10 mg or I flare again. Thankfully my doctor is not giving up and are trying to fight with BCBS to get a "medically necessary" approval, I guess that's because I would just want to take it just because, not because it is medically necessary. insurance companies, ugh!!
 
Turftech said:
I just started Stelera a couple weeks ago and I haven't felt anything. I went to a new GI recently who communicates a little better then my other and he said that meds just don't seem to work for me and surgery is looking like the choice. Not even prednisone as I'm on 60mg now and it's not doing much.

Anyway, I've been in a pretty bad flare as of late but.. and I dont want to jinx it, but... my frequency and urgency has just slightly subsided over the last two days. I didn't even have to get up in the night which doesn't happen.

Anyway, hopefully it's the Stelera.

But no ill feelings from it, no.
Click to expand...


You may ask your GI for imuran. It took 4-5 weeks for stelara to kick in to my system, but once i added the imuran at the 4th week i felt immediate response in a few days. They work together pretty good. Hopefully you will be fine also.
My plan is to use imuran for the first 6-8 months. Then i will decrease the dose every other month.
 
Thanks Agozal, I will have to ask my doctor about that one. I have not been on imuran. I just hate that insurance companies play such a large part in our medical treatment and that pharmaceuticals are so expensive.
 
I've stopped taking Stelara now and my flare continues. However they started me on Otezla for the psoriasis which has almost immediately cleared it up. I've noticed something else though, all of a sudden, the joint pain I've been experiencing for years is just about gone. Since Otezla is used to treat psoriatic arthritis, I begin to wonder if the pain that everyone attributed to Crohns wasn't psoriatic arthritis after all. I will have to pursue this with my rheumatologist.

Hopefully I can re-start Remicade now that the psoriasis is cleared up.
 
rrhood1 said:
I've stopped taking Stelara now and my flare continues. However they started me on Otezla for the psoriasis which has almost immediately cleared it up. I've noticed something else though, all of a sudden, the joint pain I've been experiencing for years is just about gone. Since Otezla is used to treat psoriatic arthritis, I begin to wonder if the pain that everyone attributed to Crohns wasn't psoriatic arthritis after all. I will have to pursue this with my rheumatologist.

Hopefully I can re-start Remicade now that the psoriasis is cleared up.
Click to expand...
I hope good things for you.
 
We just joined the Stelara club today. My daughter did the IV loading dose.this is the last drug for us as she has tried everything else and has been allergic to everything except Entyvio which worked ok until she developed severe migraines and we had to stop it in December.
My question is a few people mention taking it with imuran. If you are taking both how can you really say it is the Stelara working and not the imuran?
Anyway imuran is not an option for us as she had a very severe allergic reaction to it when first diagnosed.
For those only on Stelara when did you see improvement?
 
Hello,
I'm about to start Stelara, & I too had a severe allergic reaction to Imuran; had to be hospitalized & felt like I was dying.
I'm worried since I'm allergic to Imuran that I might not be able to tolerate Stelara.
Where is your daughter on Stelara treatment now, if you don't mind me asking?
I hope she'feeling better, & thank you for your post & reply.

Dana B in TX
 
darubo said:
Hello,
I'm about to start Stelara, & I too had a severe allergic reaction to Imuran; had to be hospitalized & felt like I was dying.
I'm worried since I'm allergic to Imuran that I might not be able to tolerate Stelara.
Where is your daughter on Stelara treatment now, if you don't mind me asking?
I hope she'feeling better, & thank you for your post & reply.

Dana B in TX
Click to expand...

I wish you the best.
 
Hi, I am new here. My daughter is starting Stelara on Monday. She failed Remicade and Humira as she developed Antibodies in both cases by the 4th infusion/injection. Hoping the same does not happen with Stelara...
 
Dude007 said:
Hi, I am new here. My daughter is starting Stelara on Monday. She failed Remicade and Humira as she developed Antibodies in both cases by the 4th infusion/injection. Hoping the same does not happen with Stelara...
Click to expand...
Hi. I hope the Stelara works for your daughter. Tagging Clash, Maya 142 and my little penguin.
 
We are seven weeks out from the initial infusion and my daughter is not doing well at all. Did everyone's doctor wait 8 weeks between loading dose and the next dose? It just seems like such a long time in between.
Dude007,
My daughter is allergic to remicade, Humira, and cimzia, I was very worried about the possibility of an allergy to Stelara. No issues but we premedicate with Benadryl.
Darubo,
I am not sure what happened I replied to,you last week but the reply disappeared. My daughter has done the loading dose only so far. She is now only on the Stelara and methotrexate. She has weaned off prednisone and budesonide.
She is not doing great. She is also on EEN and continues to have stomach pain and bloody stools started up again last week. I have had a call into the doctor but he is on vacation and we have not gotten a call back from his covering doctor.
 
I would guess Stelara could be moved up, it just might be a fight with the insurance company. We have done higher than normal doses for many biologics - Humira, Simponi and Remicade.

We were told Stelara takes a long time to kick in - it can take more than 6 months according to our GI.

Hang in there!! Hope you get a call back soon.
 
Mine seems to have kicked in. I had my last Remicade infusion in March, and got peripheral neuropathy. In April I was put on Prednisone because I was flaring. Now down to 5 mg a day, almost done. I had my first Stelara infusion three weeks ago. I was slightly constipated yesterday, which hasn't happened since I was diagnosed in 2011. Haven't gone yet today. I don't think it's the prednisone, it stopped my flare, but it's never worked "that" well. I'm not having any Crohn's symptoms. I'm generally very sensitive to drugs. So far I've experienced some mild headaches, which are unusual for me.
 
I had my second dose on Friday. I could choose the stomach or the upper arm, so had it in the arm. No pain at all. For a few days prior, I had mucus and looser stools, but that has ended now. I wonder if I need to move to 7 weeks. I don't have a GE currently, so that could be difficult. No side effects and no Crohn's symptoms, other than those few days. Happily it seems to be working.
 
Geez, where to start? I had colon cancer in 2011 and my large intestine removed and have an internal jpouch. I was diagnosed with Crohns years ago, also have had UC.

Went on Humira at urging of Dr at Baystate, it worked great for a few years then I develped plaque psorasis of my scalp and eyebrows and a few itchy rashes. SOO off that and then tried Remicade and Imuran for 6 months. It helped a bit not as much as humira. My diet tolerance was more limited. (on humira it was almost like normal people could eat with limited roughage). However Remicade kicked my BP up like crazy during infusions and my BP was borderline high anyway so we went off Remicade. I have bad osteoarthritis and it helped a bit.

Had to go on Budesonide /Entocort for few months and still on Imuran. Crohns healed pretty much but I am having some issues with IBD and inflamation in my Upper GI system and indigestion.

Dr and a consulting Dr think I should go on Stelara and see if it helps. I hesitate cause Cancer is in my family and I have had it. I am surviving on Imuran but not feeling great. On a white food diet mostly and if I cheat I feel it . Since they want the Stelara to use to heal the Upper GI issues, they do not know the effectiveness of Stelara on those issues as it was designed for the colon I believe.

They think I could enjoy a better quality of life (I am 64) and eat more regular foods.. gosh maybe even veggies...

Any advice? Experience? Input?

Appreciate it!

Thanks.
 
jazzygirl52 said:
Geez, where to start? I had colon cancer in 2011 and my large intestine removed and have an internal jpouch. I was diagnosed with Crohns years ago, also have had UC.

Went on Humira at urging of Dr at Baystate, it worked great for a few years then I develped plaque psorasis of my scalp and eyebrows and a few itchy rashes. SOO off that and then tried Remicade and Imuran for 6 months. It helped a bit not as much as humira. My diet tolerance was more limited. (on humira it was almost like normal people could eat with limited roughage). However Remicade kicked my BP up like crazy during infusions and my BP was borderline high anyway so we went off Remicade. I have bad osteoarthritis and it helped a bit.

Had to go on Budesonide /Entocort for few months and still on Imuran. Crohns healed pretty much but I am having some issues with IBD and inflamation in my Upper GI system and indigestion.

Dr and a consulting Dr think I should go on Stelara and see if it helps. I hesitate cause Cancer is in my family and I have had it. I am surviving on Imuran but not feeling great. On a white food diet mostly and if I cheat I feel it . Since they want the Stelara to use to heal the Upper GI issues, they do not know the effectiveness of Stelara on those issues as it was designed for the colon I believe.

They think I could enjoy a better quality of life (I am 64) and eat more regular foods.. gosh maybe even veggies...

Any advice? Experience? Input?

Appreciate it!

Thanks.
Click to expand...
I do not believe stelara would increase your risk of cancer any more than imuran/remicade/humira. In fact I have heard stelara may actually be less risky than the others.
Sorry to hear of your difficulties. A PPI drug may help your upper inflammation as well if you were allowed one but not sure due to your osteo
 
Eleanor Rigby... what is PPI drug? I am on pantoprozole (sp?)

I dont know if my insurance would approve Stelara ...especially for upper GI ....but I can find out... they said they would start a case for it... if I could eat more and have a more dependable gut I would.....
 
becls said:
I am starting Stelara, hopefully this week I will get the infusions. Can anyone tell me if you had any ill feelings immediately after the infusion or the next day. I was on Remicade years ago and got very nauseated during and after the infusion and was very tired the next day. I am hoping Stelara is as good as everyone is reporting it to be as I am have ran out of medicines to treat my Crohn's. Any info will be appreciated.
Click to expand...


On Remicade I learned that the day after you were supposed to rest completely I can zap your energy and make you feel like you want to collapse
 
Had my first stelara infusion yesterday for crohns and off label upper gi issue. Had major side effects and had to go to the ER, numbness in my face, stiff upper back and neck, tongue swelling, and next day lip swelling. Two trips to the ER on Prednisone and benedryl for a week at least. I am now stating ALLERGIC to Stelara and not having another infusion. This one is a 2 month supply in my body.
 
Have not met with or talked to MY dr yet but based on this experience I do not want to try again. When I had Humira no problems. When I had remicade infusion they premed me with benedryl and tylenol. This time they had no premed orders and I told them I had previous orders with other drugs but dr did not order. Dont think that would have made a difference with the other side effects besides itching.
 
jazzygirl52 said:
Had my first stelara infusion yesterday for crohns and off label upper gi issue. Had major side effects and had to go to the ER, numbness in my face, stiff upper back and neck, tongue swelling, and next day lip swelling. Two trips to the ER on Prednisone and benedryl for a week at least. I am now stating ALLERGIC to Stelara and not having another infusion. This one is a 2 month supply in my body.
Click to expand...

Sorry to hear about the infusion reaction. It happens. For stelara infusion reactions are pretty rare.
 
My doctor wants me to switch to either Stelara or Entyvio. She prefers Stelara for me though. I have been on a high dose of Remicade for the past 8 months and still have pretty active disease seen on double balloon enteroscopy and MRE. I'm only having a partial response to the Remicade as my CBC is fairly normal now, which was terrible last year, but my albumin has been declining again.

How are people doing on Stelara as compared to when you started? If you responded, how long did it take to notice an improvement?
 
So after having the stelara first infusion on 8/4/17 and getting the serious side effect allergic reactions mentioned above (swelling in tongue, numbness in lips and face, hard to swallow), and getting 2nd trip to ER on 8/5/17 as they came back after initial ER treatment of 60 mg prednisone and benedryl, was put on 60 mg 5 days/40 5 days, 30 5 days..etc weaning off. Well the 60 mg prednisone helped but had to take ativan to calm down. I tiered down to 40 mg Thurs,Fri,Sat and today Sun. I had EXTREME watery diahrhea constantly as of Friday morning to today. I was weak and not well. Got the covering GI on phone and he upped dose back to 60 mg and said i need to work with dr to tier down slower. And to hyrdrate like crazy or go to the ER and have them IV me and medicate me. ..... It helped a lot I think to go back to 60 mg. I did not plan on havin to be on prednisone after the infusion and now am on it for at least a month. ...

that part sucks. He wanted to talk about going on the Entyvio but I said I am on Imuran and the Stelarais a 2 months in my system and now the prednisone so NOT open to that right now. I really am afraid after this experience to go on anothe biologic.

But I will say the meds Stelara or Prednisone, cant tell, are helping my osteoarthritis in my two horrible knees, my back pain, and neckpain. And somewhat my stomach up til Friday.

I am pretty upset and depressed with being out of action for over a week and a half due to this and did manage to sneak a visit to my mom in the nursing home yesterday, but looking forward to getting past this and being able to continue doing my things that I need to do in life... Hugs welcome:)
 
I hope you'll feel better soon. I heard entyvio induce less allergic reactions compare to remicade for example...
 
well currently have the stelara still in me (2 mo dose given 8/4) and been on prednisone since then due to the allergic reactions (numbness in side of face, swelling of tongue, numb lips, hard to swallow). Can't tell what is doing what inside except my aches and pains in my joints especially my knees and back and feet have been really improved. My stomach is not happy with the prednisone-- I have no large intestine so easy to throw off the stool looseness. I have had issues with severe diarrhea in downsizing the prednisone but hydrating and using imodium and citrucel fiber to thicken it. I am also still on Imuran.

Note, my medicare insurance and supplemental had a huge copay but a pharmacy I used for Humira that got my copay to zero has also been able to qualify me for a very very low like $38 copay now for Stelara.... they are in Springfield MA, Baystate Specialty Pharmacy. (I didnt qualify for Stelara help as I am on Medicare). So keep trying for help with copays. I have Crohns but this was for upper GI inflamation and mucus. I dont know how they wrote up the order to qualify it.

Can't even think about next steps. Entevo maybe if it gets bad. Not being able to eat anything except rice, white bread, turkey, chicken, eggs gets old....
 

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