What next if you can't tolerate infliximab

[pops14]

Hi Dear All,
I am a new member mum of a 14yr old teen. Diagnosed 14 months ago had x2 courses of modulin didn't work,started on Azaaithropine Prednisilone didn't work, now had 3 doses of Infliximabthis worked but had reaction following last infusion, have been warned that Drs may not let him have more due to reaction. Does anyone have experence with this and what the next step will be. Have always been twitchy about him being on infliximab as he is on both aza and pred and in risk group for nasty side effects

 

[Clash]

Welcome to the forum. I'm sorry that your son has struggled to find relief and the reaction to Remicade was scary, I'm sure. There are two other biologics that are used for those that Remicade fails. One is Humira and the other is Cimzia. There are other immunosuppressant as well, such as 6MP and Methotrexate. All of those do have the warnings of the nasty side effects.

I'm going to tag MLP and Dexy as their kids have experience with Humira. I hope your son finds relief soon.

 

[my little penguin]

DS reacted to remicade
as clash said he is now on humira.
pediatric doses are 20mg less than 30 kg
over 30kg adult dose 40mg every other week.
Ds started humira in the end of April.
so far not doing as well as remicade on it.
but we are still hopeful.

good luck

 

[Jmrogers4]

Just wanted to say Welcome. I have a 14 year old as well. We've done the Aza, pred and Methotrexate but have no experience so far with biologics. Hope you find what works for him soon. Just wanted to offer my support

 

[pops14]

Thanks All,
so nice to here from someone going through the same as us, am based in UK and dont know if other Biologics are widely used will ask at next appointment. I am an ex nurse and have a sister who is quite ill with crohns so have a bit of insider knowledge sometimes I wish I didn't !! Poor chap keeps thinking the next round of drugs will help then we have a blip. At moment he seems well as Remicade has worked brought his ESR down to normal first time in 18 months but expect it will gradually creap up again. have appointment on 2nd will let you know what drs say.

 

[positivemum]

Just wanted to say hi as we are Uk too and my son is 14. He was diagnosed at 12. We did 8 weeks Fortisip shakes then pred and antibiotics initially then tapered and added Azathioprine. Has been on Pentasa the whole time too. Have also had mesalazine suppositories. Still not quite there! Had iron and Vit D problems so 3 rounds of iron infusions. Hoping we have the right supplements at last for iron and Vit D. Hope your sister feels an improvement soon. Welcome to the site and please do share any inside knowledge because it has been a rollercoaster for us and this site has been a godsend

 

[pops14]

Hi pm good to here from u although i have background knowedge its all in adults and quiet a long time ago so feel lost at times, has your son had any problems with growing L had grown an cm for two years till july then he suddenly started again YEY also delay pubity which was a worry but that seems to have kicked in all but very slow.sounds like your meds path has been very different to ours hope its all working. My sister has been unlucky intollerant to so many drugs Pred analaphalactic to pentasa all inunosupressants make her blood levels drop. on infliximab at mo but not responding. have you isolated any food that triggers a reaction Garlic and bananas are a no no for L.

 

[DustyKat]

Hi pops14 and :welcome:

I so very sorry to hear about your boy. :ghug:

Where is your son's Crohn's located, and what type of disease does he have, stricturing or fistulising?

Does he have any complications like abscesses?

Dusty. xxx

 

[pops14]

hi dusty,
thanks for asking he has crohns in illium luckly no major strutural changes as yet, just he did not respond to all treatment he had over last year scope results were worse one year on from diagnosis,just exasperated as he now seems better on Remicade but has reacted to last infusion so will have to start all over again with ?? what.
Katie

 

[upsetmom]

Welcome to the group Katie.

I'm sorry to hear about your son:hug: I hope they find something that works.

 

[DustyKat]

Generally it would mean moving to another biologic and being paediatric with Crohn's you should be eligible for Humira in the UK.

Failing that the other consideration would be surgery. Of course this is not the ideal outcome in many ways but disease that is confined to the ileocaecal region does tend to support good surgical outcomes. Also in children that do not respond to treatment, where growth is an ongoing issue and where surgery is viable then it should not be left off the table as an option. Have a look at this thread:

http://www.crohnsforum.com/showthread.php?t=40792

Both of my children have had ileocaecal resections with disease that was confined to the ileum. They have had very good outcomes, with the support of Imuran, being in remission for 7 years and 2.5 years respectively. I am in no way promoting surgery for your son and would much rather he find a suitable medication to control his disease but I do feel that at times surgery is considered such a no no that too much time is wasted on failing medication. Just have it at the back of your mind that it can be a successful treatment rather than the last resort failure it is often perceived as because nothing else has worked.

Dusty. xxx

 

[pops14]

Hello all, so lovely of you to reply to my thread and so pleased I have found this support, we seem on a roller coaster at moment and would love it to slow down, consultant being great seeing him every 3 months, but louis condition is ever changing and he's had a rough year. hate not knowing what they will offer next if they take him off inflixmab, think they will as he had swollon flushed face for two days post last infusion.check bloods tomorrow as he had low counts.

to all

Katie

 

[pops14]

Hi Dustykat
Thank you so much for that link will read it tomorrow when I have more time, Will talk it through with DRs next week.

Katie

 

[Sascot]

Hi and welcome. My son is 14 and on 6mp. Our GI has only really mentioned Methotrexate as another alternative other than Infliximab. Hope it keeps working for your son for a long time.

 

[polly13]

Hi Katie and welcome - my daughter Lucy didn't tolerate infliximab too well and had a couple of reactions when it happened it was during the infusion so the took a break and slowed it down significantly putting it in over 6 - 8 hours and that worked but it eventually lost its effectiveness and we were changed to humira so I imagine that option is open to u in the uk - hope your ds is feeling better

 

[pops14]

Hi polly13
Thanks for replying, how is your daughter on Humira? doing well I hope.Last lot of bloods were good so its looking ok at moment but not sure if they will carry him on I would like them to try one more time and top him up with more Hydro & Piriton after a few hours, reaction came on 3 hours after he finished infusion. You came reom a lovely part of the world.

Katie

 

[pops14]

Hi All
We had our appointment with consultant he thinks louis may be in remission but giong to check facal calp to see, wants him to have next infliximab and to be closly observed to see extent of reaction, bit scary as reactions always snowball but at least we will be in hospital if it happens. so have to see october what happens, if he reacts will have to stop, forgot to ask DURR!! what next, why does my mind go blank in appointments you have your 5/10 mins of time with con and you forget key question.
Katie

 

[Brian'sMom]

My son did well on Remicade but also had an allergic reaction on his third infusion. They tried it again with steroids but had a reaction again. We immediately went to Humira. It worked well and we had normal labs for a year and half. We've been up and down this past year. I think its still helping...but not like it did. Not sure why it seems to have lost it's punch. Dr's are considering Cimzia...not sure it that's going to be our next step or not.

 

[pops14]

Hi BM,
What was the second reaction like? worried that it will be alot more severe than first as they tend to snowball, hope they find a way of settling your lad so anoying when you find a med that works then the gremlins set in.

 

[Brian'sMom]

The first reaction was actually the worst because he didn't know what was happening so he didn't tell me. I just started to notice him clearing his throat often. I ran to get a nurse. His airway got really tight. And his face turned red and he had trouble breathing. The second time he was aware of what to watch for so as soon as he felt the slightest change in his throat he alerted us. They put the oxygen monitor thing on his finger and sure enough it showed a decrease. So they immediately stopped it. I think a total of 1 tsp went in 2nd time. He got a rash on his face both times. It came later.

 

[Patricia56]

Many people find it helpful to write down their questions/concerns and take the list to their appointment. You can make a copy for the doctor and they usually like that because they know exactly what it is you want to discuss or cover.

Also you may want to use this memory aid: BRAND


B - what are the Benefits of the plan

R - what arre the Risks of the plan

A - what are the Alternatives to the plan

N - what if we do Nothing?

D - decide

 

[pops14]

thanks to you both, his reaction was mild very red face developed three hours post infision then it swelled up like a pred face, also agitated and uncomfortable he is olimpic useless at describing symptoms so could not explain why he felt uncomfortable. swelling face worries me most as could spread to throat as it did with Brian, does seem to be very common to react to Remicade.

 

[pops14]

hi all, back in on Monday for fourth infliximab staying in over night to see if he reacts again, only I saw his ? reaction so Dr wants to try again and hospital document it, scary as reactions always get worse the more you are exposed to drug.Lets hpoe I was wrong and we sale it.

Katie

 

[Sascot]

Good luck for the infusion tomorrow!

 

[Jmrogers4]

Good luck with infusion today, hope there are no problems

 

[kimmidwife]

Good luck! We also had a lot of issues with the different medications. Hope you can find something that works for him.

 

[Brian'sMom]

Did it go well? Been thinking of you

 

[pops14]

Hi All, Thanks so much for all your thoughts i think they did some good Louis had infusion and amazingly no reaction, were kept in as precaution but all ok.did have strange thing happen has stated to get brusing marks on arms after repeted blood pressure monitoring also dark spots on buttocks and legs, platelet count low normal and clotting ok, GI nurse thinks it may be mild ITP more auto immune!! going to keep close eye on this one as Haematology was my nursing speciality and any signs like that get me worring.
Katie

 

[Shelby17]

The same thing happened to me! On my third dose of Remicade I went in to anaphylactic shock. When tested, the doctors discovered that I had developed antibodies to the medication so would no longer be able to take it. I am currently on Cimzia and it hasn't been working too well for me. I feel that the Humira was a better option and worked for me for about a year before I switched to the Remicade.