Crying and lost: HUMIRA injections, or Remicade infusions?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Honey

Honey

Joined
Mar 21, 2013
Messages
475
Hi there, feeling really upset. Asked to go back on Remicade infusions as Crohns is active again, after 2 and half years remission. Said no to Humira injections as my hair came out and I felt miserable, probably giving myself injections contributed to that! I ended up in hospital for three weeks with a lung infection due to Remicade! Afraid to go back on it as this could happen again. No guarantee that will not happen again.
Now considering going for Humira injections to see how that goes? How does one make that decision? Any advice and support would be most appreciated just now. Thank you.
:rosette1::confused::rosette1:
 
Why do you think the hair loss was from giving the Humira injection to yourself? My dermatologist told me of another patient she has with Crohns Disease that had her hair fall out because of Humira. Is the doctor pretty the lung infection won't come back if you started up with Remicade again? How long have you been off of Remicade? You might want to ask the doctor about testing you to see if you have built up antibodies against the Remicade. There is also Cimzia which you could ask the doctor about. I was on Stelara for a little while. I don't know if it has been approved yet for Crohns yet. I think they let me use it because I also have psoriasis. Let us know how it goes.
 
What about stelera or simponi ?
Typically if you stop remicade there is a very high risk of reaction if you start it up again which is why they don't give "breaks" of meds in the US even if your in remission

Humira is less painful now
They changed the formula and it's available in Europe now
Not sure if the uk
Will say humira you may not have an allergic reaction but you still build up antibodies if it's stopped so agsin risk is there that it won't be very effective
 
Hi there, the hair loss , rather thinning was due to the Humira, I did not need to go to the hairdresser for a year. My hair stopped growing too! I have been off Remicade for over two years and have been well. Now I am beginning to have tummy pain, high Calprotectin results and very tired.
He did not say anything about any other treatment, as I became ll on pills too. As far as becoming immune to Remicade Treatment, I think I will only know when, and if, I go on it. Thank you for your quick reply. Much appreciated.
 
They can test your blood for antibodies to remicade and humira prior to starting it
Less risky that way
 
Hi there, thank you. I shall ask about test for antibodies to both before I decide which one. At the moment, I am reasonably well and able to eat. I have been told I can wait until it becomes more imminent. However, if I start to feel uncomfortable on a daily basis then I will phone my Consultant.
 
Another medicine to consider if both Remicade and Humira can't work for you is Entyvio. It's another biologic but is targeted to the integrin molecule to prevent white blood cells from attacking other cells rather than to blocking TNF as the other two drugs do.
 
Hi there,
thank you for the info re Entyvio. It looks like that is not an option as it has never been suggested, only the other two. I shall certainly ask my Consultant whenever I need to see him.
:rosette1::duh::rosette1:
 
Yes, certainly ask your GI about Entyvio or other biologics - Stelara and Simponi. Do not assume that because it hasn't been mentioned that you are not a candidate.

Remicade and Humira are the two most common starting points when tackling Crohn's with biologics, but they are far from being the only options.
 
Sorry to hear that you're having a flare again. :( I agree with testing for antibodies first before starting either Remicade or Humira again. There have been some members who started up Remicade again for example and had an anaphylactic reaction and it is scary. Best to avoid that if possible.

Definitely bring up other medication options with your doctor. If they haven't heard of them then bring a print out of the medication with you so they can start doing some research themselves so you can get the best care possible. :)
 
Thank you, Jennifer. It looks like in the U.K. they have certain prescribed treatments and that is that! I think I am beginning to lean towards Humira for treatment. I have not been at all well today, hoping tomorrow is better!
:panda-wave-t:
 
Honey said:
Thank you, Jennifer. It looks like in the U.K. they have certain prescribed treatments and that is that! I think I am beginning to lean towards Humira for treatment. I have not been at all well today, hoping tomorrow is better!
:panda-wave-t:
Click to expand...
Hope you are better soon.
 
Thank you. I feel it is the beginning of how I felt before I needed treatment last time. Constant sore tummy, and Diarr.. all morning. Hope tomorrow is better, very tired, fell asleep for a few hours there. Feeling brighter now.
 
Hi Jennifer,
thank you for the link. I know from previous experience though of asking about another treatment mentioned on this site, I was told it would have to be discussed with his team! Nothing came off that. It is good to be informed and to question. I am told if I react again to Remicade , the next step is Surgery. That scares me! Having a bag to deal with .
 
Honey said:
Hi Jennifer,
thank you for the link. I know from previous experience though of asking about another treatment mentioned on this site, I was told it would have to be discussed with his team! Nothing came off that. It is good to be informed and to question. I am told if I react again to Remicade , the next step is Surgery. That scares me! Having a bag to deal with .
Click to expand...

DO NOT accept surgery if Remicade fails. That is ridiculous. There are like 5 other biologics to choose from. And do it in combination with an immune modulator. I just fired my old doctor because he suggested the same thing since I failed Humira. I was appalled. Now i'm on Remicade with Cellcept (and a short course of Prednisone) and pain free!
 
Honey said:
Hi Jennifer,
thank you for the link. I know from previous experience though of asking about another treatment mentioned on this site, I was told it would have to be discussed with his team! Nothing came off that. It is good to be informed and to question. I am told if I react again to Remicade , the next step is Surgery. That scares me! Having a bag to deal with .
Click to expand...
I don't think surgery always means a bag. I has a resection 6 years ago and didn't need a bag.
 
Surgery should always be a last resort. Do your best to push for another medication because you'll still need some sort of treatment even if you did opt for surgery because it's not a cure and there's no guarantee that it will induce remission and if it does, for how long? Can't keep removing section after section. There's only so much bowel to remove. :(
 
Hi there, thank you for your replies. Yes, I was told I would require surgery if Remicade makes me ill again and it would mean a bag, permanently! Also know, surgery would mean respite for a while but it can start attacking again. The problem with meds in the past has been I had bad reactions too! eg Aziothioprane, probably wrong spelling, I took Pancreatitis after three days! Scary! Currently on 5mg Prednisolone and 2mg Pentasa.
I think Humira is my best option. Thank you for your support too. I need it at the moment, it is good to share. Most people dismiss me if I open my mouth to say how I really am ~ ' You are looking so well !' I have a cheerful disposition and love life, so fool people really!!
I am feeling a bit better this morning, about to have my breakfast. I vary a lot.
Keep the advice coming.
:rosette1::bigwave::rosette1:
 
Hi Honey,

I'm in the UK and Entyvio has definitely been suggested to me by my nurse as a possible option. I'm currently on Humira but may need to change due to side-effects which is a shame as it is controlling my Crohn's really well.
 
Hi there, I have spoken to my Consultant on the phone and he has arranged to see me next Tuesday morning. I know I require treatment as I am going several times after Breakfast, before I manage to go out! I felt I couldn't continue with that ,though symptoms are mild in comparison to what I was a few years ago.
I am disappointed and afraid to go on Humira, knowing the side effects I had before but there comes a time when it is necessary. It is the better of the two options as Remicade put me in hospital for three weeks with a lung infection.
Need your support . I will keep you informed. A big thank you to you all. :rosette1::runaway::rosette1:
 
Sending hugs your way! I hope your consultation goes well. Definitely, bring up the antibodies test for Humira before starting since formation of antibodies is a concern when starting back a previously used biologic.
 
Hi there, spoken to my Consultant who said we could hold of for the moment but wishes to repeat some tests first ,starting with Calprotectin one. I know my figures are extremely high, varying from 485 to over 1000! He said the difficulty with me is I react to everything!! He is going to look at my records again. I am reasonably well but that varies throughout the day. I asked about antibodies and he said that just means it might not work for you. Thanks for the input, best wishes to you all.
 

Similar threads

K
This has destroyed my life.
Replies
27
Views
3K
kephra
K
K
So confused after apparent relapse
Replies
6
Views
2K
Opieshuffle13
O
F
Remicade rash
Replies
6
Views
2K
rrhood1
rrhood1
F
Remicade rash
Replies
0
Views
1K
Fedupforreal
F
L
Choosing a new treatment, please help.
Replies
0
Views
2K
Lyza
L

Latest posts

Back
Top