Infliximab side effects

[christian_jb]

Hi there, my first post on here , but have been reading for a while now.

ive had my first 2 infliximab infusions and due for my third infusion this week. i think it started to wear off as from the start of this week, around saturday/sunday ive started to feel a bit of a upset stomache and a bit of loose stools.

Since ive been on this i still feel very fatigued and tired yet my consultant says this should improve? my ankle/foot hurts if i stand up and after sitting for around 5 mins or so..my muscles all over my body feel as if they are tired and would pull if i moved to quick...

I went to see my consultant 2 weeks ago and he checked my blood results, they are very vague when they tell me the results, and never say what is what......

i got told something to do with crp and esr?

supposed to be between 0 -10 , i was 22 , now its at 5
supposed to be between 0 -5 , i was 6 , now its 3

thats all i get told.

my partner starts to get angry when we go as it seems to me, because they deal with crohns patients all the time they dont seem to give all the details....or may be its me not being more direct and asking exactley what things are...

After my infusions i feel really tired and my knees ache like mad, this seems to be like this till i goto sleep and wake the next day.......

thanks for reading

chris

 

[KayleighMeek]

Hello,
Sorry to hear you didn't have a good experience with the GI dr sometimes I find they do rush as they are always running late but that's not good enough they need to make sure you understand everything.
With the high CRP and ESR these are indicators of inflammation in the body they are usually raised whilst in a flare and should drop down within the normal ranges when in remmision. From what you were told they are normal but if you are still having pain they should investigate it and let you know what the next step is. If you continue to have pain I would go back to see them and see if you can get some answers.
One other thing I know I have read on this forum a few times of tiredness and joint pain being a side affect of infliximab so this could be causing some of your problems.
Hope you start to feel better soon x

 

[AlliRuns]

Hi Chris,

Welcome to the forum.
I'm waiting for my third infusion too, mine is next Tuesday. Have had the same sleepy effect.

Hope it works for you.

Alli

 

[dhay]

I am due my third infusion on Thursday and over the last few days have suddenly felt hugely tired and, more often than not, feel full / bloated after minimal food .... trying to stay positive and thinking it is just 'one of those things' and will right itself!!

KOBO

 

[araceli]

Hi everybody. My daughter started remicade 4 months ago, I know it takes 4 or 5 infusions to start kicking in. After first,second and third dose she had loose stools and was very tired, know she is doing great. she is going in to her fifth one in a couple of weeks. Hope things get better for all of you.

 

[christian_jb]

hi again, had my third infusion yesterday, just about .......i turned up at the out patients department to be told i didnt have an appointment, i was like you what...you must be joking.....the person i spoke to actualy gave me the appointment card with the 2nd and third appointments on. She then told me that i had finished the course. I know people can make mistakes and i let them try to rectify the situation without kicking up a stink.

So they got in contact with my ibd nurse who must have kicked up a stink and got the ball rolling. Anyway , i was told that they had lost my prescription for infliximab and put some on order which would take 30 mins. So i sit there for 30 minutes and then i get told that there are no spaces for me to have the infusion in the morning and to come back after lunch.....

So in the mean time a have a short chat with my ibd nurse, who has been great with me in the past. i asked if infliximab could wear off too soon ,as my stomach started to gurgle a little at the start of the week and started getting loose stools and would this require more infusions rather than 1 every 8 weeks. She said that if its wearing off its not working and would require surgery. So i thought nothing of it at the time.

Any way i turned up at 2pm and eventualy got the infusion started around 3pm. everything went great, but was then told i wouldnt be able to have any more infusions till i had had seen the consultant , which im still waiting for an appointment.....is this normal? im sure 3 infusions isnt enough to stop treatment?

well after the third infusion, i felt really tired again with acheing knees which seems to be the norm with me after the infusion, and didnt get a very good nights sleep either, kept waking up and having really wierd dreams which i cant remember. feel good this morning though, not feeling tired yet but feel a bit zonked out.

chris

 

[BryanDeming]

Hey Chris,

I had my first 3 infusions while in the hospital. I can't say I remember any side effects at all. I just want to say PLEASE DO NOT STOP TREATMENT! It took me about 19 weeks before I showed lasting results from Remicade, I read somewhere it can take around 17 weeks. It takes time for your body to learn what to do with the medications. Anyways don't give up too quickly, any of you reading this. Allow time for your treatments to begin to work fully.

 

[christian_jb]

hi there,

thanks for all the input on this

its not me that wants to stop the treatment......its my consultant and ibd nurse..they have put me on hold till my next consultation, and they will decide then wether to carry on....i was told to begin with , that this will be for 12 months or more, so im confused to why they have done this.

 

[KayleighMeek]

If the appointment isn't soon I would deffinatley phone them tell them how bad you are feeling and get an urgent appointment you don't want to put of getting your infusions. X

 

[araceli]

Try to talk to your doctor as soon as possible. The only time they stop it is when is not working or you get a bad reaction to the infusion. Is to early to know if it will work for you, Unless something show up in your blood work. I am assuming you have blood tests before each infusion. But usually you are supposed to see your doctor between infusions at first to see how are you doing. Good luck.

 

[heisenberg]

If there has been zero response after 3 doses then the treatment is stopped, because there is no chance of it working if that doesn't occur. If there has been at least some improvement then it will be continued. It costs around £3000 per infusion so it is a waste of money to keep giving it to people if they have shown no response. That is why you have to see the consultant after 3 doses , for him to decide whether it is worth it to continue or not.

 

[mclavin]

I'm on Remicade and I have joint pain, muscle fatigue and soreness. My GI told me that your body builds up antibodies to the Remicade because part of its makeup includes mice proteins (foreign). These antibodies deposit in the joints causing aches and pains, i.e., your knee pain. There is also something called serum sickness that can occur. I f you do stay on the biologic and these types of symptoms persist, you might want to check this out with your physician.

 

[AK47]

Hey Chris,

I had my first 3 infusions while in the hospital. I can't say I remember any side effects at all. I just want to say PLEASE DO NOT STOP TREATMENT! It took me about 19 weeks before I showed lasting results from Remicade, I read somewhere it can take around 17 weeks. It takes time for your body to learn what to do with the medications. Anyways don't give up too quickly, any of you reading this. Allow time for your treatments to begin to work fully.

I definitely agree with you there! I didn't feel big improvements until after my 4th Infusion, GI were about to stop the treatment at 3rd but I insisted to give it one more try and BOOM it worked. Everyones body is different and some get immediate responses whilst it takes some time for others. So yes, don't stop this treatment until you are fully convinced nothing is happening or if your symptoms are getting worse!

 

[AK47]

Chris - Your experience is very similar to mine, i turned up on my appointment day and told me I wasn't even booked! They lost my prescription and had to wait for IBD nurse to write one out again, I had to wait around for them to order the medicine from the pharmacy which took over 3 hours!!

 

[AlliRuns]

My clinic always calls you several days before to confirm your appointment, avoids mix ups.

 

[charliemouse99]

Hi Christian, welcome to the forum. I've found a lot of useful advice and great support here. I'm due to start my Infliximab infusions end of this month so been reading up and asking lots of questions about what to expect. From what I've been told it can take a few treatments for side affects to calm down, but I guess it's what feels right or good for you. Hopefully the treatment will work for you, hang in there!

 

[Trysha]

Hi Christian
So sorry to hear of your problems with the incompetence of nurses and absence of GI help and hope this is soon resolved to your satisfaction.
After my second dose of remicade, the GI decided I had a partial response but may be developing antibodies.
I am due to have the third dose March 14th and then in May will see the GI immediately prior to having the fourth dose. He intends to review the situation , order antibody tests and other bloodwork and then decide if I get the fourth dose or not.If antibodies are present it is dangerous to continue the Remicade.
If antibodies are present it will be discontinued and he will order Humira which I won't be too happy about since I can't face self injections..
I have had a few aches, lots of fatigue up till now.
Remicade has stopped a lot of Crohn's symptoms and I now can sleep all night without waking and minimal pain, no more bleeding so I think it has worked for me.
Hope you find this helpful.
Feel better soon
Hugs and best wishes
Trysha

 

[mclavin]

Hi Christian
So sorry to hear of your problems with the incompetence of nurses and absence of GI help and hope this is soon resolved to your satisfaction.
After my second dose of remicade, the GI decided I had a partial response but may be developing antibodies.
I am due to have the third dose March 14th and then in May will see the GI immediately prior to having the fourth dose. He intends to review the situation , order antibody tests and other bloodwork and then decide if I get the fourth dose or not.If antibodies are present it is dangerous to continue the Remicade.
If antibodies are present it will be discontinued and he will order Humira which I won't be too happy about since I can't face self injections..
I have had a few aches, lots of fatigue up till now.
Remicade has stopped a lot of Crohn's symptoms and I now can sleep all night without waking and minimal pain, no more bleeding so I think it has worked for me.
Hope you find this helpful.
Feel better soon
Hugs and best wishes
Trysha

Trysha - I did Remicade, then Humira and now, back on Remciade. Self inject....What!?!! Needles are not my friends. I do not like them, in fact, I despise them BUT I was able to do the injections and you will too. Demand the Humire pen - although its an injection, you can't see the needle (big plus). If I can do it so can you. Don't worry, you have enough to deal with having Crohn's. If you do have to switch, remember, Humira pen not syringe.