Infliximab side effect?

[Stephyjane]

Hi, first off thank you so much for all of your support for Ella and myself,you truly have been a lifesaver.
Well Ella had her first Infliximab infusion last Fri and everything was fine until Tues when Ella had a pain in her right leg from the knee down. As the days have past it is now excruciating for her and she is unable to bear any weight on that leg or someone to touch it. We had it checked by a paediatrician yesterday who said it could be a number of different things and to wait until we see Ella's dr on Fri.
Also today Ella has complained of her long distance vision being blurry, and I put it down to tiredness.
She is so fed up and understandably so. Her tummy problems have improved fantastically but been replaced by this.
She is on a lot of different meds, Aza, sulphasalzine, lansaprazole, Pred, antibiotics. Could they be affecting her?
Sorry so many qu's!!
We've missed all her secondary school open evenings to see where she would like to go next year, she is so sad at the moment I don't know what to say xx

 

[Dukeis]

I had some strange leg pains the first time I took Remicade. The second dose they gave me Acetaminophen & Diphenhydramine before the infusion and I never had that problem after that. They gave me that with every infusion after that also. Prednisone can also cause problems with the legs.

 

[Mom2oneboy]

Poor Ella! I'm glad to hear that her tummy is better. Hopefully, the other things will fall into place very soon. I don't have the answers to any of your questions but thought I would mention that my neighbor (adult) said she gets blurry vision after her infusions.

 

[jmckinley]

Ryan had wrist pain after his infusion. The GI nurse practitioner acted like that was normal. It resolved itself after about 5 days. He has also had an allergic reaction to the remicade now too, so no more.

I hope your mystery knee pain goes away and the remicade does the trick for your tummy issues!

 

[DustyKat]

Oh Steph, your poor girl...:hug:

I have no experience with Infliximab here but just wanted to say that I am thinking of you.

Dusty. xxx

 

[Stephyjane]

Thanks xx
What treatment did Ryan have after he couldn't have infliximab anymore?
I was told this is the maximum treatment Ella can have which worries me if this doesn't work out for her.
I was a total fail at the drs office today, got no further with finding out the cause of the knee pain, the dr is speaking to Oxford to discuss whether it's a side effect and to whether Ella can have her second dose next week. We are to carry on with paracetamol and call him if it gets worse.
Ella has been to the bathroom 8 times today, it's not dia but still that's a lot. Does that mean the infliximab is struggling?
I wish I had a crystal ball sometimes so I could answer some of these qu's!! Xxx

 

[ALotToLearn]

The only medication my son is on at the moment is prednisone and 6mp. Prednisone was started only two days ago and within 12 hours he was having severe pain in his left shin. Again he had pain yesterday, but it subsided after 10-15 minutes. Haven't seen him since dropping him off at school today to see if he's still having that issue?

 

[Tesscorm]

Remicade is only one biologic, there are also Humira and Cimzia (not sure about the UK but I don't believe Cimzia has yet been approved in Canada for IBD). I've read of many members, kids as well, who have moved from one biologic to another.

I don't have any experience with Remicade so I'm not sure how long before it starts to work but, like everything else, I would imagine it varies from person to person.

I hope her knee begins to feel better! :ghug:

Crystal ball... OMG, wouldn't that be soooooo nice!

 

[Stephyjane]

Is 6 mp the same as Azathioprine ?
Ella has been on prednisolone oral and iv, pretty much since the end of June. I think they are going to do a bone scan at some point.
It's strange how you read that lots feel so much better after starting on Pred, we never ever got that with Ella.
I hope your sons pains settle down xxx

 

[Stephyjane]

I know they use Humira for rheumatoid arthritis here I'm not sure about Crohn's but i am very new to this. I have never heard of Cimzia?
I suppose we are still in very early days.
Lewis's mum- how is he today?? Xx

 

[ALotToLearn]

Thanks. I believe 6mp and azathioprine are used interchangably. Is your daughter in constant pain? My son's was only severe for approximately 30 minutes. After that was more of a dull pain I believe. Spoke to the nurse today. Asked if reducing the dosage from 40mg to something less would be an option? Stated he was on 40 mg because they usually prescribe 1 mg per kilo of weight to be effective. Hoping it continues to lessen. Good luck with your daughter!

Brett

 

[ALotToLearn]

Steph I also think I remember reading that one of the potential side effects of the prednisone was blurred vision? Just going from memory what I received along with the prescription when I picked it up a few days ago.

Brett

 

[Jenn]

No advice on the leg pain, sorry. My son had occasional aches and pains while on Remicade, and still does now - last week back pain, this week hip pain. Aspercreme works well. He's been on Humira since Feb after developing antibodies to Remicade and it's going pretty well. Last I heard, Humira is only approved for kids after failing Remicade. I'm hearing that Cimzia is only just now being approved for kids too? We had to add 6mp back to the mix, but he has been bouncing off the walls this week.

 

[my little penguin]

It took DS about three infusions of remicade to start feeling a lot better.
He had leg, hip, knee pain before remicade while on 6-mp and Mtx both.
His is just related to Ibd an EIM.
He sees a Rheumo now to monitor it.

 

[DustyKat]

Is 6 mp the same as Azathioprine ?
I know they use Humira for rheumatoid arthritis here I'm not sure about Crohn's but i am very new to this. I have never heard of Cimzia?

Azathioprine is the parent drug of 6mp, so yes essentially same.

I think the UK is the same as us at this point...Cimzia is not available as yet.

I do know though that Humira is available for use with Crohn's in the UK.

Dusty. xxx

 

[jmckinley]

Steph, Ryan hasn't started a new treatment yet. Remicade failed last Tuesday. Then failed a second attempt yesterday. We will talk to GI next week to see what our next steps are. This time, neck pain is what Ryan is complaining of after failed remicade attempt.

 

[Sascot]

Sorry I missed this thread as we nipped across to Amsterdam with the kids for a few days. Sorry to hear Ella is having alot of pain - I really have no experience with meds so I don't know anything helpful. That's a shame she missed the open evening, it is horrible when they have to miss something they really want to go to. I hope they manage to get to the bottom of it and make her feel better.

 

[Stephyjane]

Thanks for your support.
No change in Ella's leg pain :-( I shall call the dr again tomorrow to let him know as Ella is due to have her next infliximab on Fri and I'm not sure I'm happy for her to have it if this leg issue isn't resolved.
She's also been going to the toilet about 8x a day the past 3 or 4 days but not really loose. I know it'll take a few treatments for it to be right but I'm scared about more joint pain.
We've had to borrow my Grandmas wheelchair just so we can get out the house. Another week that Ella won't be at school. I hate this disease.
And do you know what Ella said earlier to me "don't worry mum some people in life get things earlier than others so it is ok"
Broke my heart x

 

[DustyKat]

Oh Steph...:hug::hug::hug:

I am so sorry to hear that Ellie is still suffering with the leg pain.

What a beautiful and amazing daughter you have Mum. :heart:

My thought and well wishes are you, :ghug:
Dusty. xxx

 

[my little penguin]

Hugs..
Sorry she is feeling bad.
It really took DS the full 6 weeks ( 3 infusions) to feel better.
Each infusion takes about 2 weeks to get the full effect plus they increase dose each time.

 

[jmckinley]

Sorry that the pain continues. I hope that the remicade starts working soon!

 

[farmerswifey]

aww hugs to both you xxxx remember I gave you my phone number so if you ever need a long distance shoulder, pls call me x