2nd infliximab infusion low ferritin and vit D levels severe fatigue

[Leed2713]

Hi everyone

my son had surgery back in june done 8 weeks of module through ng tube. He stayed on azathioprine and is due his third infliximab infusion this Thursday. After his second infusion he had a few days of bleeding at each bm. This cleared up but since evrytime he has a bm it is very painful. The main side effect has been extreme fatigue. He is unable to do a full day at school and has joint pain to his foot mainly. The last number of weeks he has been saying that he feels full quickly and his appetite has been poor. he put on 2 kilos between the 1st and 2nd infusion but has not put anymore due to him not eating very well. I asked the gp to test his ferratin and vitamin levels along with the normal blood test he gets. So now they have came back his crp and esr are within normal range. His ferritin has came back at 8 which is supposed to be 30 and his vitamin d is borderline so his gp has given him vitamin d supplements. he is due to start these today. I just wanted to know if anyone has had same experience as this. I was expecting him to feel a lot better on the infliximab and aza combination. the fatigue is really getting him down and im concerned its not a good sign

 

[my little penguin]

Remicade takes time as in 6-8 weeks or more from the start to heal things
Aza takes 3-6 months to reach therapuetic levels
I know you want him better but you need to be patient
Trust me we were there saying he has been in remicade 6 weeks and still vomitingetc
But magically things got better at week 8

The gut didn't go bad overnight and takes many months to heal
The fact his crp is down is a good thing
Healing takes lots of energy as well

If the feeling full continues ask about a delayed gastric emptying test
Happens with crohns

Hugs
Tagging maya142

 

[Leed2713]

Remicade takes time as in 6-8 weeks or more from the start to heal things
Aza takes 3-6 months to reach therapuetic levels
I know you want him better but you need to be patient
Trust me we were there saying he has been in remicade 6 weeks and still vomitingetc
But magically things got better at week 8

The gut didn't go bad overnight and takes many months to heal
The fact his crp is down is a good thing
Healing takes lots of energy as well

If the feeling full continues ask about a delayed gastric emptying test
Happens with crohns

Hugs
Tagging maya142

Thank you for getting back to me. He was on azathioprine since last September after he finished his first 10 weeks on module after diagnosis in june 2015. he started to get symptoms again back in end feb start of march 2016. I took him down to er after weeks of symptoms on 6th june. they thought it was appendix. what was exploratory ended up in open surgery and he had an appendectomy and right hemicolectomy with part of terminal ileum also removed. They said they were so shocked with what the found when they went in. the appendix were black with hole in it he had a stricture and an abscess. So your right I need to be patient that's a lot of healing that needs done. I have just never seen him this fatigued ever and bleeding is not his normal. he is a constipated crohnie but has never had much bleeding or any anal fissures but has recently been complaining of pain on bm. The school also just rang me he fell down stairs thankfully he is just badly bruised on the leg but isn't sure if he blacked our or just missed a step. sorry im just in panic mode and need to settle my head xo

 

[Maya142]

Is he on iron supplements as well as Vitamin D supplements? The low ferritin and vit. D would explain the fatigue.

I agree, it is just going to take a while. It's SO hard to wait but it sounds like he's getting better very slowly, which is a good sign. It took 3-4 infusions for us, but considering your kiddo had surgery and was so sick, it may even be longer.

If he continues to feel full and gets nauseous with meals, you could also for a gastric emptying test. That is to test if food is sitting in the stomach instead of emptying properly, which causes nausea, fullness and stomach pain.

 

[Mehita]

Did they say what to do about the low ferritin? Is he on iron supplements or did they say anything about anemia? Poor thing.

As for the fatigue, how old is he? Could it be a combo of IBD and growth spurts?

 

[Leed2713]

Is he on iron supplements as well as Vitamin D supplements? The low ferritin and vit. D would explain the fatigue.

I agree, it is just going to take a while. It's SO hard to wait but it sounds like he's getting better very slowly, which is a good sign. It took 3-4 infusions for us, but considering your kiddo had surgery and was so sick, it may even be longer.

If he continues to feel full and gets nauseous with meals, you could also for a gastric emptying test. That is to test if food is sitting in the stomach instead of emptying properly, which causes nausea, fullness and stomach pain.

No I asked last week for his ferritin and vitamin levels to be tested along with his routine blood before infliximab infusions. This was from researching posts on here. So they have said from today to start 4 tablets of vitamin d per day and that on Thursday they will test ferritin levels again and if still low they will do an iron infusion after his infliximab. I will definitely ask about that gastric emptying test on Thursday as she when I mentioned the decrease in appetite and feeling of fullness she just said it was nothing to do with the infliximab.

 

[Leed2713]

Did they say what to do about the low ferritin? Is he on iron supplements or did they say anything about anemia? Poor thing.

As for the fatigue, how old is he? Could it be a combo of IBD and growth spurts?

he is 13 so possible growth spurt but it is really severe fatigue. Its at the point were he is falling asleep in class and cant do full day at school. Also he had a fall today and not sure if was due to his tiredness. He is a little foggy brained at the minute as well and experiencing joint pain occasionally. they have said they will test ferritin again before infusion and if still low will do iron infusion after infliximab infusion.

 

[Maya142]

It's a pretty easy test - he will eat eggs and toast (or something similar) that have a tracer in them. Then they'll take images every so often for 4 hours. My kiddo got to watch a movie while the test was going on (we were at a Children's Hospital), so it wasn't too bad. Just kind of long.

If more than 10% of the meal is retained after 4 hours, then you have a diagnosis of Gastroparesis.

There are some (not very many) motility medications that can help speed up gastric emptying. So that would be the next step.

 

[Leed2713]

Thanks maya we are based in northern Ireland. Im hoping the childrens hospital will have this type of testing as will be less traumatic than a blood test. Bless him but he has aspergers syndrome as well and a really bad needle phobia and bad veins. He does be at the point of hyper ventilating getting the iv in and generally takes at least 3 attempts to get it in.

 

[my little penguin]

Have you tried buzzy bee ?
Or emla cream or both ?
https://buzzyhelps.com

We love it for iv and blood draws

 

[Leed2713]

Have you tried buzzy bee ?
Or emla cream or both ?
https://buzzyhelps.com

We love it for iv and blood draws

No haven't tried it. Anything is worth a try. Even the gastro nurse is loosing confidence. She has a great record with getting veins too. His must just be a little harder xo

 

[Maya142]

Being hydrated helps with IVs. The nurse also sometimes puts a heat pack on my daughter's hand/arm, to make the vein easier to see. She has tiny veins and it usually take 2-3 pokes for an IV.

We have Buzzy too and my daughter thinks it helps. She was also surprised by how much numbing cream (using EMLA cream) helped.

The gastric emptying test does not require an IV . I don't think there is an equivalent blood test, so to test for Gastroparesis, they'd really have to do it this way.

 

[Leed2713]

the numbing cream and spray don't seem to help him much with the phobia. I must give the heating pads a try and look online for buzzy. thank you so much for your help every one this group is a god send

 

[CrohnsKidMom]

I second the hydrating in prep for bloodwork or IV. It has made a huge difference for my son-from poking around for 10 minutes to get a vein, to getting it on the first try. I make sure my son starts drinking extra water about 48 hours before the needle, and put a big push on the 24 hours prior. He also uses a heating pad on the way to the hospital.

 

[Leed2713]

I will be definitely giving all these suggestions a try. thank you everyone. hopefully this infusion will start working its magic

 

[steph_irish]

Hi there,
So sorry to hear your son is suffering so much, I really hope he starts to get some relief soon.
Ifliximab is an amazing drug for dealing with extra manifestations of CD.

I too was on Azathioprine prior and it really did not agree with me. How did your son respond to aza? Did he have many side effects?
I felt nauseaous, loss of appetite, basically had a severe reaction to the stuff. Its a nasty drug for some people.

If your sons ferritin is low an iron infusion is more than likely a must. It doesn't work overnight as it takes around 1-2 weeks after the infusion to really feel the benefits.

I like most am in the severe category of crohns, sadly we need to be so ill to qualify for funding for this life saving drug.

I lost my fallopian tubes and crohns had started to target my appendix also.

I'm just on Infliximab and really have finally discovered a new normal and have managed to get my life back.
Do you think your son would benefit on Infliximab alone?

I wish your son every success with his treatment.

Steph

 

[Leed2713]

Hi there,
So sorry to hear your son is suffering so much, I really hope he starts to get some relief soon.
Ifliximab is an amazing drug for dealing with extra manifestations of CD.

I too was on Azathioprine prior and it really did not agree with me. How did your son respond to aza? Did he have many side effects?
I felt nauseaous, loss of appetite, basically had a severe reaction to the stuff. Its a nasty drug for some people.

If your sons ferritin is low an iron infusion is more than likely a must. It doesn't work overnight as it takes around 1-2 weeks after the infusion to really feel the benefits.

I like most am in the severe category of crohns, sadly we need to be so ill to qualify for funding for this life saving drug.

I lost my fallopian tubes and crohns had started to target my appendix also.

I'm just on Infliximab and really have finally discovered a new normal and have managed to get my life back.
Do you think your son would benefit on Infliximab alone?

I wish your son every success with his treatment.

Steph

Hi Steph he didn't have many side effects with the azathioprine. It just didn't work for him as he started to have crohns symptoms again after about 5 months. They wanted to keep him on azathioprine with the infliximab for at least 6 months. I think it's to stop developing antibodies. After the 6 months if he is symptom free it would be reviewed with the idea it would just be infliximab alone. He is however getting the severe fatigue and feeling full quickly as well as the pain ion bm. I'm hoping this next infusion will start to see changes. His crohns has been seen as severe. The gastro nurse has said that if the ferratin is still low on Thursday they will give iron infusion as well after his infliximab infusion. It's so hard to watch him like this. It was never going to be a quick fix but just expected him to get better after surgery not get better and then seem to be back to being sick. I'm so sorry to hear what you are going through and having to loose your Fallopian tubes as well. It is so horrible what u all have to go through. All the stories I am hearing about infliximab are mainly positive ones. So as everyone says maybe just taking time to kick in. These vitamin D tablets and iron infusion of he gets it also should definitely help with the fatigue xo

 

[steph_irish]

Hey there,
Sounds like your son is definitely on the right path, as you said it sure is no quick fix, but he will get there.
Infliximab is an amazing drug and I have had a very positive response.
I'm crossing all fingers and toes that your son has the same positive response.
I remember just how energised and strong I started to feel 2 weeks after my iron infusion.
Chronic fatigue passed and I wasn't so pale and out of breath all the time.

Its very hard to see your son go through this, I'm so glad I have this disease and not my son.
Please feel free to contact anytime

I wish you all every success xo

 

[Leed2713]

thank you steph irish fingers crossed it will work. Will know better after tomorrow I suppose. Thank you for the support. I will keep everyone posted as I know when I search for posts I always love to see updates. Its such a cruel disease praying for a cure everyday.

 

[steph_irish]

thank you steph irish fingers crossed it will work. Will know better after tomorrow I suppose. Thank you for the support. I will keep everyone posted as I know when I search for posts I always love to see updates. Its such a cruel disease praying for a cure everyday.

Sending hugs :getwell: