Imuran and Infliximab together ????

[james's mum]

Hi,
just new to the forum. We have an 11 year old son confirmed with crohns in January 2013. He has it in the mouth, small bowel, large bowel and perianal, fissures and fistulas.
He had a golf ball abscess removed from his bottom in November last year. Face swelling, mouth ulcers, pain and bleeding on BM. He went on an eight week liquid diet of Ensure Plus and symptoms did improve, but once back on food they came back within a couple of weeks. He has been on Imuran 75mg for 3 months now and symptoms not improving. They found 3 more abscesses and have now placed 2 draining setons in his bottom about 6 weeks ago. (they have there own on going problems) Things still not improving and he flared again, he is now into week 3 of his second Ensure diet, symptoms better but now has small infection where the seton is and started on Flagyl. Gastro doc. says she doesn't think things improving in perianal area and now we need to look at combining the Imuran with Infliximab.
My question, is there anyone who has had experience with their child on both of these meds. at the same time. Any info would be greatly appreciated.

James's mum.

 

[Twiggy930]

Hi Jame's Mum,

Sorry to hear about everything your son has had to endure. I do not have any experience with Imuran and Infliximab given together but I do know that at the large Children's Hospital we go to they have many kids on that combo of drugs. While the combo does carry with it some severe, although extraordinarily rare, side effects it is the drug combo that has the best track record of success. If you look at the stats and crunch the numbers the benefits of the drug combo definitely out weigh the risks, by far. As parents, however, it is hard to think rationally about the risks when it comes to our kids.

 

[my little penguin]

Lots of papers on the combo in ped research section ( top of Ibd parents)
http://www.crohnsforum.com/showthread.php?t=43002

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/

 

[Catherine]

Hi james'mum

Welcome to forum.

We looked in remicade for Sarah but she doesn't qualify for Medicare approval. Yes it is scary drug but your son continuing symptoms must be really severe for his doctors to believe he will qualify..

Dusty posted some good links for me regarding the qualifying process in Australia.

Good luck with your decision.

 

[ChampsMom]

Hi J's Mum...

I just wanted to extend a warm welcome - glad you found the forum, sorry you and your family have found yourself in the position of needing it... I pray the doctors are able to find the right combo of meds for your son as soon as possible.

Lots of great info listed in the threads and links to tons of info - best wishes...

 

[DustyKat]

Hi James's mum and :welcome:

Oh my, I am so sorry to hear of all your boy is going through, bless him. :ghug: and you too!

We don't have any experience with the combined therapy but there are certainly parent's here that do. Your son certainly sounds like he does have a severe case of Crohn's at present and the current treatments are struggling to get things under control. Three months would be the minimum time frame you give for Imuran to work as it takes about this long to become therapeutic but can take up to six months.

Remicade does have very good results at healing perianal Crohn's.

What bloods is he having done and how often?

Just as a guide this is what my son (19) has done every 2 months. He is in remission and on Imuran:

FBC (Full Blood Count - measures red and white cells)
LFT's (Liver Function Tests)
UEC's (Urea, Creatinine and Electrolytes - measures kidney function)
CRP & ESR (Inflammatory markers)
Iron Studies
B12
Vit D
Magnesium
Zinc

The last four are particularly important when you have small bowel disease and/or malabsorption and/or nutritional/dietary issues.

From what you have written your son should not have any problem being approved for Remicade due to his fistulising disease that is not responding to continuing treatment. This is the Medicare page relating to Crohn's Disease:

http://www.medicareaustralia.gov.au/provider/pbs/drugs1/crohns.jsp

Just one more thing, if you aren't already doing so be sure and obtain copies of all his pathology, blood, imaging etc results.

Good luck Mum, I hope your boy soon finds remission and lasting relief and please don't hesitate to ask as many questions as you want. Remember, there is no such thing as a dumb question!

Dusty. xxx

 

[DustyKat]

Good grief! I just went back to the Medicare page and realised that not once on that whole page did they spell Crohn's Disease right! :yfaint:

They have left the 's off and that would also explain why nothing shows up in the search.

So if anyone wants to search the Medicare website put Crohn into search. Ugh!

Think a phone call will be pending! :lol:

Dusty.

 

[james's mum]

hi everyone and thank you all for your warm welcome and advise. Not a good couple of days. James had sore throat, swollen glands, mild temp. sore bottom, i think this is mainly from the setons, and just plain down being on this liquid diet. aslo the flagyl arn't helping as they seem to make him feel sick all the time. But he went off to school this morning and no phone calls as yet. I felt a bit guilty sending him but I thought maybe if he got with his friends it might take his mind off something. Hopefully will be able to see GI tomorrow, they are pretty sure they are going to start what ever it is to happen for him to go on the infliximab.
Sorry for the rave. I am sure tomorrow will be a better day.

 

[ChampsMom]

Hey J's Mum... How did his day go? Good luck with the GI...

 

[crohnsinct]

Hi James's mum. My daughter is on Remicade and Methotrexate. Remicade has worked wonders for her. The risks of all these drugs are scary and when you start combining them even scarier but once you see your child healthy and enjoying life the drugs are your new best friend. The biologics are not easy drugs to pop on and off of but keep in mind that once he gets to a nice deep remission you may be able to start to wean off the Imuran. That is currently our plan. Down the road, hoping to ease off the mtx or extend out the remi schedule.

Good luck at the Doc!

 

[james's mum]

Hi all
Went back to GI on Wednesday and she said James could start food again, it been 4 weeks this time. Boy was he happy BUT by Friday all the mouth ulcers were back. Today the side of his face is a little swollen from them, so it looks like a phone call on Monday and he will have to start the infliximab as well as stay on the imuran. thought it might last a little longer but as soon as he starts to eat food he flares again.
Anyway have to just keep on working our way forward and see what happens. Thanks for all your thoughts.

 

[Twiggy930]

Sorry to hear this. I hope the infliximab works wonders and he feels great on it.

:hang:

 

[my little penguin]

Good luck with the remicade

 

[Sascot]

Sorry to hear that, hope the Remicade helps quickly!