New to Humira

[YorkshireLass]

Hi all, new to posting but have been reading for a while.

I was diagnosed with Crohns in July 2002 after being rushed in for emergency surgery (suspected appx/bowel). They cut away 40cm and then told me when I woke up that I had Crohns Disease. This was about 6 years after GI told me I had IBS but did not think I had Crohns (no further tests done). What a hit that was - but also good to find out why I felt sooooo bad, couldn't eat, tired, spent more time in the loo than any other room in the house etc etc. Two years later on pred for wedding and honeymoon before they started 6mp then two months later spent 8 days in hosp on IV steroids. Intermittent flares after that (including when pregnant with son 2). Was on 6mp for 7 years. Sept 2013 they took me off 6mp as I had "been on it a long time" - no substitute given. Christmas eve 2013 rushed into hosp for the night suspected stricture. After 6 months on steroids and liquid feeds, MRI, colonoscopy, gastroscopy I had right hemi (10cm) in May 2014.

My most recent flare started less than a year after the last surgery. Back for MRI and colonoscopy. GI told me that the crohns is back but there is "only" 4cm of disease present. Back on steroids (budesonide) and 6mp (hubby not happy as that had stopped working before). 6mp not effective so added allopurinol which didn't agree with me.

I had my four loading injections of Humira last week followed two days later by an iron infusion (having another one this week). I just feel tired all the time, not too bad in the mornings and can get some things done but afternoons I just want to sleep. Pain in both sides, aches down legs, joint pain in hands and knees. I am normally such a positive person (crohns is part of my life it will not rule my life!) but I am just so sick of feeling so tired when all I want to do is go out and play games with the children and take them out places. I know I have to give it some time but really do hope the Humira is going to work and I can start to enjoy things again.

 

[Jennifer]

Hello YorkshireLass and welcome to the forum!

I'm sorry that the 6MP didn't work out for you even with the Allopurinol combo. I used to take that combo myself.

I've also taken Humira in the past and I remember it making me extremely tired. I made a thread about it a while back, I could try to track it down if you want. I'm pretty sure you saw this but we do have a Humira section on the forum if you have any questions or concerns: http://www.crohnsforum.com/forumdisplay.php?f=59

I hope it starts working for you soon! Keep us posted.

 

[YorkshireLass]

Thank you Jennifer.

I am lucky to have a great family to support me but there are times when you need to tell someone who really understands whether it is something worrying you, something bad or just something funny about this hateful disease we are all living with.

 

[Jennifer]

Very true. I grew up with a sister who also has Crohn's so there was at least someone for me to connect with on that level but as we got older our thoughts about treatment differed so having a forum like this back then would have been really beneficial to me. I'm glad that it's here for everyone else though that's newly diagnosed and seeking support.

 

[shaunbern2001]

Ey op, Lass.

I had my loading dose just over a month ago because of a flare that started on New Years' Eve (brilliant timing!) & my 'double' dose last Thursday. After the loading dose I felt terrible - just as if someone pulled the plug out of me. A day or two before the second dose I started to feel back to where I was before the first dose, then the second dose set me back again. It wasn't so bad & the fatigue/malaise lasted 'til about Tuesday. Now (touch wood) I'm feeling ok. I'm cautiously optimistic that it's working & I can go about my business as normal.

Give it the next couple of weeks and feeling ok might just sneak up on you. Good luck.

 

[Pilgrim]

It took about 3 months for my daughter to not feel a little rotten with her Humira shot but we are now down the road over one year and she is doing so well.

We did have to move the dosing to weekly about six months in. She was barely managing life before starting the med. So exhausted.

I hope it works well for you. Give it time and have hope. Use those good hours on the kids if you can.

 

[my little penguin]

Ds is 12 and started humira at age 9
He has been on it for 3.5 years so far.
In the beginning it took a bit for it to kick in fully .
His was closer to 5 months but in all fairness the first three months the gi tried the kiddie dose (20 mg ) even though he was at the max weight .
Afte getting 40 mg for 8 weeks he was a lot better .
Over the years he has had to increase the dose to every week and added Mtx for juvenile spondyloarthritis but overall hus crohns has been good


Good luck
It will get better just takes time

 

[shaunbern2001]

Had my first standard dose last week and it knocked me sideways for the evening/night but I was back within reasonable limits of energy the next day. Having said that, I've gradually become more tired as this week's gone by, which is a bit depressing. I'm back in work but on a phased return so I'm not putting in a full shift but I'm still not firing on all cylinders yet. That still feels a little way off (both work-wise and in my social life).
Despite all that, I'm erring on the side of feeling positive towards the Humira. As ever, hoping for the best!

 

[ronroush7]

Welcome to the forum. I am sorry for how you are feeling now. I hope the Humira works for you. I will be starting it soon.

 

[YorkshireLass]

Well first four loading doses went ok (pen not too bad). Still felt rotten for 13 days then suddenly had a great day. Last week had two doses and knocked me off my feet again for five days. Feeling ok, lot more energy (had the iron infusions). See what happens next week with the next dose. Best wishes to all and thanks for your support.