Stelara/Ustekinumab Club

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with Stelara/Ustekinumab.

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the Stelara path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

1. Why was your child prescribed Stelara?

2. Have they previously been on a different biologic? If so, which and for how long?

3. Does your child take any other medications in conjunction with Stelara. If so, which?

4. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

5. What dose and regime was prescribed?

6. Has the dose been changed over time and why?

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

8. How long does the injection take?

9. Do you use a pen or syringe?

10. Did you have a choice of which method to use and if so why did you choose the one you did?

11. Are there any preparations that need to be made?
e.g. Do you/they prepare the injection site in any way to reduce the pain caused by the injection.

12. Does your child do their own injections?

13. Where do you/your child inject on the body?

14. Is there a time of day and/or day of the week that is preferable?

15. Can you still administer injections if you are unwell or have an infection?

16. Did Stelara work for your child and how long was it prescribed for?

17. If it didn't work or treatment has been discontinued why is that?

18. How is the treatment monitored for success (i.e. what tests and how often)?

19. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

20. How often are bloods drawn?

21. How is the cost of the injection covered?

22. How do you obtain supplies: Pick up from a pharmacy/hospital or are they delivered to your home?

23. Any other tips or information?

Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Stelara article located here in the wiki and at the Stelara Forum located here, (Note Stelara forum yet to be set up).

Thanks,
Dusty

 

[AZMOM]

Dusty - Do you think it's best for us to cut and paste the questions into our posts? Also, do you want newbies like us or folks with a certain time length on the drug?

J.

 

[DustyKat]

Hey J.

Yes, cut and paste the questions.

I don’t mind the length of time someone has been on a drug, so all welcome!

Dusty. xxx

 

[AZMOM]

OK.....here we go......

1. Why was your child prescribed Stelara?

Claire's existing treatment regimen is failing at keeping her disease in remission. Really for the last four years, we've just been riding a roller coaster. I requested that we figure out a good biologic - we being GI, Rheumatology and Mom.

2. Have they previously been on a different biologic? If so, which and for how long?

Claire was on Enbrel for about 18 months. She had a sudden onset of Acute Transverse Myelitis. ATM is considered an "adverse neurological event" and if it occurs more than once it's not longer ATM, it's a diagnosis of MS. Adverse neurological events are in the black box warnings for all the biologics that are TNF blockers. This mean no more Enbrel, no Remicade, no Humira, etc. etc. Stelara blocks two of the Interluken receptors (my understanding) so it works in a different manner than the TNF blockers and doesn't share the risk of neuro side effects.

3. Does your child take any other medications in conjunction with Stelara. If so, which?

We have only had one dose at the time I'm typing. The plan at this point is to wean the Uceris (different formulation of Entocort) first. Then if she continues to do well and respond as I'm praying she will to the Stelara, we will wean the Methotrexate.

4. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

Crohn's Disease

5. What dose and regime was prescribed?

We are still early. At week 0 she got 45mg, we will get another 45 at week 4, 135mg (not a typo) at week 12 and then 45mg every eight weeks ongoing.

6. Has the dose been changed over time and why?

Not yet. Too early!

7. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with.

No

8. How long does the injection take?

It's a preloaded syringe so just a matter of seconds. Claire did say it burned some.

9. Do you use a pen or syringe?

Preloaded syringe....I wouldn't really call it a pen.

10. Did you have a choice of which method to use and if so why did you choose the one you did?

No choice offered.

11. Are there any preparations that need to be made?
e.g. Do you/they prepare the injection site in any way to reduce the pain caused by the injection.

We do not. We do; however, let her apply an ice pack immediately following the injection. She does the same with her methotrexate. I think it helps psychologically to "stop the burn" although I'm not sure that it really dissipates any quicker with the ice pack. But, whatever makes her feel better works for me.

12. Does your child do their own injections?

Not right now. She goes through phases. She did her MTX for about a year on her own (under supervision) and then suddenly quit.

13. Where do you/your child inject on the body?

Buttocks (her choice because legs and arms are really thin right now and she will not do stomach)

14. Is there a time of day and/or day of the week that is preferable?

Not for this one so far but we did do it in the evening.

15. Can you still administer injections if you are unwell or have an infection?

I'm supposed to call him if this occurs. With the Enbrel years ago, fever meant no shot.

16. Did Stelara work for your child and how long was it prescribed for?

The jury's still out......

17. If it didn't work or treatment has been discontinued why is that?

The jury's still out......

18. How is the treatment monitored for success (i.e. what tests and how often)?

The jury's still out......but she does have labs ordered for next month.

19. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

We are supposed to call if she experiences severe headaches because they can be an indicator of a serious side effect. So far, no excitement.

20. How often are bloods drawn?

The jury's still out......this is on our list of questions for visit.

21. How is the cost of the injection covered?

Thank GOODNESS our insurance covered it for Claire. We have a $75 copay per injection.

22. How do you obtain supplies: Pick up from a pharmacy/hospital or are they delivered to your home?

Pick up from pharmacy

23. Any other tips or information?

I'm hoping to have good news to report soon! And of course, have other folks on here that are using Stelara to share!

J.

 

[Livilou]

Finally have some downtime to contribute to this post! Here we go......

#1) Why was your child prescribed Stelara?
Olivia was started on off-label Stelara in April 2013, at the age of 17, for the treatment of Crohn's Disease.

#2) Have they previously been on a different biologic? If so, which and for how long?
Liv had 2 doses of Remicade in the hospital in 2008 to try to reverse a small bowel obstruction, but ended up needing to have surgery due to stricturing caused by scar tissue. The GI decided to discontinue Remi after surgery and treated Liv with 6MP for maintenance. In April 2011, flare with bleeding, and Humira was started...Liv was on Humira for 4 months...med discontinued after a diagnosis of papillary thyroid cancer, stage 1.

#3) Does your child take any other medications in conjunction with Stelara. If so, which?
Liv is only on Stelara for the treatment of CD. She does take other meds...Synthroid, supplements (Curcumin), Iron, multivits as well as Allegra for seasonal allergies.

#4) Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
CD in the terminal ileum.

#5) What dose and regime was prescribed?
Liv is on 90mg/ml every 8 weeks. Our insurance company refused to pay for loading doses, so we started with 90 mg every 8 weeks and continue with that today.

#6) Has the dose been changed over time and why?
Dosing regime has not changed.

#7) Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?
No adverse/allergic reactions thus far.

#8) How long does the injection take?
30 seconds or less to administer.

#9) Do you use a pen or syringe?
Pre-filled 3 cc syringe (spring retracable needle).

#10) Did you have a choice of which method to use and if so why did you choose the one you did?
We did not get a choice...I do not think Stelara is available in a pen....

#11) Are there any preparations that need to be made? e.g. Do you/they prepare the injection site in any way to reduce the pain caused by the injection?
We remove the med from refrigerator and let it sit to warm it up for about 30 minutes before administering. We do not prepare injection site, although Liv says it stings, but not as much as Humira did.

#12) Does your child do their own injection?
I give her the med when she is home from school. When away at college, she goes to Student Health center by appt. and the nurse on duty happily administers the shot. My girl is a bit squeamish around needles! She usually turns away and does not like to watch!

#13) Where do you/your chld inject on the body?
Liv prefers the thighs, but when away at school, the health center staff prefer to give it in deltoids. Liv says it stings more when given in the arms.

#14) Is there a time of day and/or day of the week that is preferable?
No particular time-she has recieved doses at all different times of the day, depending on her schedule.Shots are given on Thursdays. Liv has never complained of any unwellness or severe fatigue in the hours and days after injection.

#15) Can you still administer injections if you are unwell or have an infection?
We were told to notify GI if Liv has any type of infection or fever. This has not been an issue thus far. She has taken the med during severe symptoms with seasonal allergies...no problems.

#16) Did Stelara work for your child and how long was it prescribed for?
IT TOOK 6-7 MONTHS to see labs start to normalize and for Liv to become asymptomatic!!! Not sure if it would have happened sooner had she recieved loading doses? After almost 1 year on the drug, Liv had perfect labs for the first time in years! All values within normal parameters!!! Her fecal cal at first dose was 650...last 2 fecal cal levels (Jan and April) were <50!!!!!

#17) If it didn't work or treatment has been discontinued why is that?
Not applicable...Liv remains on Stelara today.

#18) How is the treatment monitored for success (i.e. what tests and how often)?
Labs drawn every 3-4 months. Awaiting scopes in August.

#19) What indications/results does your GI look for that would indicate a problem, either that the medication is not working or that med is causing an adverse or concerning reaction?
GI monitors labs(inflammation markers, CBC, liver panels, ferritin level, Vit D, albumin, ect...) and so far is very pleased with results. At visits, he always asks about any recurring or new symptoms that may indicate early activity. Liv's lab results usually correlate with symptoms/disease activity.

#20) How often are bloods drawn? Every 3-4 months or more often if symptoms or concerns arise.

#21) How is the cost of the injection covered? Our health plan covers med in full-we are responsible for $100 copay for each dose. (United Health Care/ Oxford)

#22) How do you obtain supplies: Pick up from a pharmacy/hospital or are they delivered to your home? Drug is delivered to my doorstep via UPS in a cooler. We use U.S. Specialty Care Pharmacy in Colorado. When Liv is up at school, they deliver to the student health center..we have not had any problems thus far.

#23) Any other tips or information? Please keep in mind that IT TOOK 6-7 MONTHS for us to see results from this drug!!! Hang in there....and I wish everybody positive results and remission with Stelara! Good Luck!!

Kim