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Crohn's Disease Forum » Parents of Kids with IBD » Humira/Adalimumab Club


12-24-2012, 06:06 AM   #1
DustyKat
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Humira/Adalimumab Club

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

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 Humira 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 Humira?

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 Humira. 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 Humira 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?

Bold Numbers: New or rephrased questions (last edited 27/12/12)

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 Humira article located here in the wiki and at the Humira Forum located here.

Thanks,
Dusty
__________________
Mum of 2 kids with Crohn's.

Last edited by DustyKat; 12-29-2012 at 06:31 AM.
12-24-2012, 06:37 AM   #2
izzi'smom
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We were prescribed Humira for Crohn's colitis, 40mg every other week after a loading dose of double that.
The dose was constant, and we had no adverse reaction other than pain at the inection site.
We used prefilled syringes instead of the pens, and I injected her over a minutes time. The syringe allowed me to control the injection rate (I take Humira also, and it burns terribly when injected...this is less painful when injecting slowly)

We had to get tb testing done. Izz preferred not to give her own injections, and there was no special time that we did them.
We never experienced illness on injection day.
Humira did not work for us and she was on it for two months. We discontinued Humira to start Tacrolimus in preparation for surgery.

We only had normal bloodwork while on Humira, and her symptoms never changed while on it.

The injection is covered by our insurance and we also had copay assistance from Humira's manufacturer (not income dependent), making our copay $5.
It is delivered to our door by a specialty pharmacy, which I am told is the only way to get it here.
We left the syringe out for 20 minutes before injecting (not any longer) as it lets the med warm up and is less painful. ALso, icing the area for 10 minutes before helps with pain. Izz preferred to receive her injections in her leg, but I think the belly hurts less (plus it's easier to manage a long injection in the belly)
HTH!
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
12-24-2012, 06:48 AM   #3
Dexky
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Good grief Dusty!! You just did this to keep me busy, didn't you?

1. Why was your child prescribed Humira?

A. EJ was prescribed H after failing 6mp.

2. What dose and regime was prescribed?

A. 40mg/2 weeks

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

A. As of yet, no change, but there has been talk of weekly doses.

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

A. Yes, initially he would get hand-sized, itchy red skin around injection site. He takes benadryl an hour before hand and it hasn't happened since.

5. How long does the injection take?

A. The injection itself only takes about 5 seconds or so.

6. Do you use a pen or syringe?

A. Pen

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

A. We chose the pen because of pre-measured, relatively fool proof doses. And yes, Dusty, fool proof is important to me.

8. Are there any preparations that need to be made?

A. EJ ices the injection site to numb it beforehand. We use an alcohol swab, but be sure to let it dry!

9. Does your child do their own injections?

A. He never has, but I am confident he will be able to.

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

A. EJ's have always been on Friday, late evenings. I think it is important to have a time that is easily remembered.

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

A. EJ has only had to skip one injection due to fever. Ask your doctor, of course, but generally no.

12. Did Humira work for your child and how long was it prescribed for?

A. Hmm, I don't know that he's ever achieved 100% remission, but it has kept him in good stead for 1.5 years thus far.

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

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

A. Initially, monthly blood draws; now, every three months. If there are abnormalities with bw, fecal samples are ordered. EJ is also scoped annually, both upper and lower. This is partly attributable to his psc.

15. 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?

A. Inflammatory markers, blood in stool. A known side effect is increased likelihood of cancer so blood is screened for that as well.

16. How often are bloods drawn?

A. After the first 6 months or so of monthly, every 3 months.

17. How is the cost of the injection covered?

A. Our insurance covers 100%.

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

A. We get 3 month supplies shipped to our home. They do require an adult signature.

19. Any other tips or information?

A. Overall, our experience with Humira has been positive. As with all crohns meds (with the possible exception of LDN), there is a list of possible side effects.
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
12-27-2012, 06:06 PM   #4
Jenn
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1. Why was your child prescribed Humira?

Built antibodies to Remicade

2. What dose and regime was prescribed?

20mg/4ml pediatric dose. Loading dose was first 80mg, then 40mg 2 weeks later, and then 20mg maintenance every 2 weeks .

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

not yet, but getting near the weight limit to switch from pediatric 20mg to adult 40 mg (why is there no 30mg?!?)

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

No. Some red itchy bumps the next day, from the rubbing alcohol. Has occasionally welted or bled or bruised

5. How long does the injection take?

Just a couple minutes. We ice up for 15 min. beforehand, let the syringe come to room temp in that time, helps because the needle doesn't hurt, the fluid does

6. Do you use a pen or syringe?

We use the syringe, it's much, much less painful. the epipen can bruise and the pop is startling. Also, the epipen does not come in the 20mg pediatric dose

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

at the moment, no, because of dosage, but when he goes to 40mg, I think we'll stick with the syringe. Now, if he starts dosing himself as an adult, he might do the epipen, you never see the needle and it does take some psyching myself up each time!

8. Are there any preparations that need to be made?

Said it above, but we ice for 15 min and let the syringe come to room temp in that time to minimize the pain. We inject on the front of the thigh, alternating thighs. I have to keep track on a calendar. I try to hit different spots on the thigh each time, but it's hard to know after 2 weeks! We clean with rubbing alcohol, pinch some skin, inject at a 45 deg angle as much as possible (too shallow caused a welt, too upright caused bleeding, in my experience).

9. Does your child do their own injections?

No, he's just 11. I do them.

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

We do a weekday, late afternoon, seems to work well for our schedule with work/school

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

Being sick is OK, but they say to postpone if on antibiotics. Skipping a dose is OK (up to 2 week delay)

12. Did Humira work for your child and how long was it prescribed for?

Yes! He didn't bounce in energy/color/appetite as much as Remicade, but it's working. After 7 months, he was still not in remission, his labs are good except low protein, so we added 6MP and that seems to be effective a few months later.

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

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

bloodwork every 4 weeks to monitor inflammation rate, liver levels, nutrition; because of low protein, he recently repeated endoscopy/colonoscopy/MRI to make sure nothing else going on

15. 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?

how he feels and the bloodwork

16. How often are bloods drawn?

every 4 weeks

17. How is the cost of the injection covered?

Insurance thankfully, all but $20 copay. Humira website also has a $5 copay assistance plan we use, there are others there too.

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

Our insurance required using a mail-order pharmacy. They call to set up delivery to our home every 4 weeks. It has to be kept refrigerated. I'm looking into ways to recycle the styrofoam coolers, found the website propakproducts.com had some links for local sites

19. Any other tips or information?

Humira has a great information line with nurses immediately available during normal hours and call-back in off-hours. They also covered having a home-nurse come help me through the first administration of the shot. The risk seems scary, but important to remember that it is rare and untreated IBD is SO much riskier. I really hate hearing all the commercials for it!
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
07-28-2015, 05:02 PM   #5
DustyKat
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1. Why was your child prescribed Humira?

Due to flaring.

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

No.

3. Does your child take any other medications in conjunction with Humira. If so, which?
Has been taking Imuran and Pentasa for some time.

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

Crohnís.

5. What dose and regime was prescribed?

Has had 4 and 2 loading doses and has now moved to the regimen of 40mg (one injection) fortnightly.

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

No, has only been on it for a month.

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


None so far.

8. How long does the injection take?

Injection is taken out of the fridge 20 minutes prior to injecting. He does not ice the area. From running through his checklist/procedure to applying the bandaid is about 2 minutes.

9. Do you use a pen or syringe?

Pen.

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

Yes there was a choice. Matt decided on the pen as he didnít like the idea of looking at needles.

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.


No.

12. Does your child do their own injections?

Yes. He is 22.

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

Abdomen.

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

He commenced on a Monday so has stayed with that day. He has been injecting when he gets up in the morning.

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

We havenít dealt with this yet. I would ring the IBD nurse and seek advice if I was in doubt.

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

Just commenced and no issues so continuing.

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

N/A.

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

Bloods at 3 weeks, then 6 weeks and finally out to 3 months in line with his Imuran regimen. FC will done at the 6 week mark.

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?

First post Humira GI consult Thursday so will be sussing that out then.

20. How often are bloods drawn?

3 weeks, 6 weeks and then 3 monthly.

21. How is the cost of the injection covered?

Australia - It is on the PBS (Pharmaceutical Benefits Scheme). We are not on a health care card so it is $37.90 per script which lasts a month.

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

I leave the scripts at the local pharmacy and go in and pick up a pack of two pens when needed.

23. Any other tips or information?

Abbvie have an online registering system called myhealthguide. Once you register a member of the Abbvie Care Team makes contact via the phone and talks you through all the services and products available and sets up any services you wish to take advantage of. I think Matt receives reminders via SMS when injections are due. It has been a fabulous service thus far.
07-29-2015, 09:54 AM   #6
Pilgrim
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1. Why was your child prescribed Humira?
She had an allergic reaction to AZA and her FC numbers were sky high (although symptomatically she was "in remission") We were offered a choice between Humira and Remicade and chose Humira because of our distance from infusion center.
2. Have they previously been on a different biologic? If so, which and for how long? No

3. Does your child take any other medications in conjunction with Humira. If so, which? At this time she is prescribed a 70/30 round of EN taken orally but no other pharmaceuticals

4. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's
5. What dose and regime was prescribed?
80 mg loading, then 40 mg, then 20mg pediatric dose every other week.
6. Has the dose been changed over time and why?
Yes, we have moved to weekly dosing of the 20mg about 6 months into her treatment. It seemed to be losing effectiveness.
7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
So far we have had no adverse events. Also no injection site reactions. She was very, very tired and disoriented with the first 3-4 injections - about 2 months worth.
8. How long does the injection take?
We have hers done by a nurse and it is literally just a couple of minutes.
9. Do you use a pen or syringe?
syringe
10. Did you have a choice of which method to use and if so why did you choose the one you did?
There is no pediatric dose with the pen, so it needed to be syringe
11. Are there any preparations that need to be made?
We take the med out of the fridge for a few hours before to bring it to room temp
e.g. Do you/they prepare the injection site in any way to reduce the pain caused by the injection.
No
12. Does your child do their own injections?
No (she is 4)
13. Where do you/your child inject on the body?
Because she has it administered by a nurse, she prefers to use her upper arm. If self injecting, then it is not an option
14. Is there a time of day and/or day of the week that is preferable?
She prefers to get it over with first thing in the morning, because she tends to worry about it all day
15. Can you still administer injections if you are unwell or have an infection?
We were told 48 hours with no fever
16. Did Humira work for your child and how long was it prescribed for?
It worked very well for 6 months, then she had a flare. We have started weekly treatments. As of now she is still flaring.
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)?Labs drawn every 3 months.

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?Labs and symptoms

20. How often are bloods drawn? 3 months

21. How is the cost of the injection covered?We use a provincial assistance program. We are scheduled to pay about $120/month out of pocket

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

23. Any other tips or information?
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
07-29-2015, 12:12 PM   #7
Farmwife
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1. Why was your child prescribed Humira? Juvenile Idiopathic Arthritis and IBD( microscopic)

2. Have they previously been on a different biologic? If so, which and for how long? No

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

4. Is your child diagnosed with Crohn's disease or Ulcerative Colitis? crohn's ( most likely)

5. What dose and regime was prescribed? 80mg every 4 weeks

6. Has the dose been changed over time and why?
Changed to 2 weeks at 40 mg because once a month want enough.

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?
less than minute

9. Do you use a pen or syringe?
Syringe

10. Did you have a choice of which method to use and if so why did you choose the one you did? No choice was given

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 tried numbing cream and icing

12. Does your child do their own injections?
No but she wanted to. :-)

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

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

15. Can you still administer injections if you are unwell or have an infection?
Not if she had a fever over 100f.

16. Did Humira work for your child and how long was it prescribed for?
No it didn't. She was on it for.......3 months

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

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

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?
Every 4 weeks

21. How is the cost of the injection covered?
Insurance

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

23. Any other tips or information?
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine

Last edited by Farmwife; 07-29-2015 at 09:14 PM.
07-29-2015, 07:30 PM   #8
Pilgrim
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FW - 80 mg of Humira! I've never heard of that for a dose even for an adult (exception of loading doses)!
07-29-2015, 07:46 PM   #9
Maya142
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I've heard of people doing 80mg every two weeks (which I guess is similar to 40mg weekly?) but only adults never kids (especially not little kids). Most GI's/rheumatologist seem to prefer 40mg weekly over 80mg every 2 weeks.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-29-2015, 07:54 PM   #10
Maya142
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My Support Groups:
1. Why was your child prescribed Humira? Juvenile Idiopathic Arthritis (now Ankylosing Spondylitis) and Crohn's Disease

2. Have they previously been on a different biologic? If so, which and for how long? No (the first time).

3. Does your child take any other medications in conjunction with Humira. If so, which?
Methotrexate injection (first time) and Sulfasalazine (second time)

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

5. What dose and regime was prescribed? 40mg every 2 weeks at first, eventually became 40mg every 10 days and finally 40mg weekly which worked best.
The second time, we went to weekly shots straight away since we knew those worked best for M.

6. Has the dose been changed over time and why?
Frequency changed, not the dose.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
None

8. How long does the injection take?
Probably less than a minute for the actual injection. M ices for 15-20 minutes before the injection.

9. Do you use a pen or syringe?
Pen

10. Did you have a choice of which method to use and if so why did you choose the one you did?
M did not want to see the needle and we thought the pen was easiest in case she wanted to eventually give herself injections (she 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.
We used ice, both before and after the shot.

12. Does your child do their own injections?
Yes, for a while.

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

14. Is there a time of day and/or day of the week that is preferable?
I think we did Wednesdays at night.

15. Can you still administer injections if you are unwell or have an infection?
Not allowed if she had a fever over 100.4F.

16. Did Humira work for your child and how long was it prescribed for?
The first time Humira worked very well for M (though it took weekly shots and 25mg of MTX before it finally worked). It stopped working after nearly 2 years on it. The second time M was just on it for 4 months, and it worked well for her IBD but not as well for her arthritis.

17. If it didn't work or treatment has been discontinued why is that?
Inflammation in joints/flares.

18. How is the treatment monitored for success (i.e. what tests and how often)?
Labs were drawn every month or so.

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?
Abdominal pain, diarrhea/constipation, fevers for her GI. Her rheumatologist would look for pain and swelling in her joints.


20. How often are bloods drawn?
Every 4 weeks or so.

21. How is the cost of the injection covered?
Insurance

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

23. Any other tips or information?
Humira can be pretty painful but my daughters both figured out that they felt a lot worse from the disease and that the injection pain was short lived. Chocolate and watching TV (for distraction) helped!
07-29-2015, 09:13 PM   #11
Farmwife
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FW - 80 mg of Humira! I've never heard of that for a dose even for an adult (exception of loading doses)!
I've heard of people doing 80mg every two weeks (which I guess is similar to 40mg weekly?) but only adults never kids (especially not little kids). Most GI's/rheumatologist seem to prefer 40mg weekly over 80mg every 2 weeks.
Well I've looked thru some old threads here to make sure of the amount of Humira but I can't find where I typed it.
It could have been 40 and not 80 per shot.
I believe they changed the frequency a couple times.
It was only last year but it seems a life time ago now.
07-29-2015, 09:46 PM   #12
Mr chicken
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The shots are pre filled farmwife and only come in two different doses
One is 20 mg which is the child dose
The other is 40 mg syringe which is the adult dose .
The change between the two doses depends on the weight of the kiddo
So not truly and adult dose
Frequency after loading can be weekly
Every 10 days
Or every other week.
Humira is not given once a month
Cimza is given once a month but not humira
__________________
DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
07-29-2015, 09:57 PM   #13
Jenn
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3 years later and still using successfully. He did combo with 6mp for a year and that pushed his protein levels to normal, then went to the adult dose - 40mg/ml. Still using the syringe and I'm still administering it. All's been good. Bloodwork is now every 4 months, as are checkups with the GI. He had one short, mild flare a year ago, no other problems. Considering adding oral MTX to prevent antibodies, but I'm not yet convinced side effects/long term effects outweigh monotherapy failure risk.
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