Help needed pls. Husband in hospital and starting Humira tomorrow...

[Banrockstation]

Hi everyone

We have been on the biggest rollercoaster ride since my husband (39) was diagnosed with Crohns in Oct 2009. He was relatively okay until July 2010 when he came home from work seriously ill and hasn't worked since. After many hospital admissions he was dx with a complex fistula and eventually completed a course of Infliximab. He improved dramatically but only for a short period. We were then told the Infliximab had not worked/closed the fistulas and referred to surgeons who dealt with complex cases. So have been waiting for surgery dates. In the meanwhile he has really gone downhill. Severe joint pain, cramps and the fistula was haemorraging (sp?) blood. Got in contact with consultant who reviewed latest scan and he was admitted Monday as they felt he had an abcess on the Illeum. It has turned out to be a serious flare and they have now offered Humira, starting tomorrow. Please can you tell us your stories and experiences of this drug? My husband has crohns severe and aggressive form. Thank you so much

 

[KayleighMeek]

Im sorry to hear that your husband has had a flare and sounds like he is having a really bad time with his crohn's at the minute. Has to be difficult for you aswell I know my partner hates it when im in hospital or ill.
I am on humira at the moment and have been for a couple of months it has really helped me but it did take a while for it to work, i would think around a month. Its one you have to stick with I found that it helped settle my stomach pain first then improved my arthritis in my joints.

Hope it all goes well for your husband and he starts to feel better soon.

Forgot to say I was on infliximab first and found it didn't last but seem to be ok o. Humira at the moment.

 

[Banrockstation]

Hi Kayleigh

Thanks for sharing your experience with me. It has been awful and I would honestly swap places with him to give him a break. It's heartbreaking to watch someone you love suffer so badly Me, the kids and even the dog miss him badly.

I think the consultant said to give it 6 wks. I really really hope this works, fingers crossed. It's great that it helped your arthritis as my husband really suffers with this and his back is always going if he does anything too physical.

Thanks again for your kind words and advice

 

[KayleighMeek]

I will keep my fingers crossed aswell. The arthritis I find more difficult to deal with as I get stuck in bed and have to be carried everywhere when it gets very bad lol. But not had that since the humira horray.

 

[ameslouise]

Hi Banrock - Hope things kick in and your husband starts to feel better very soon!

You are very sweet to post on his behalf and to join the forum for advice!

-Amy

 

[peaceandsmile]

Hello there,
I am really sorry about what your husband and you have to go through. I hope he will have a swift recovery and will stop suffering soon. Much love and wishes to you both! <3
I have to agree with Amy, you are so sweet to come on the board for advice for your loved one.

kisses and hugs, Aya

 

[Banrockstation]

Thank you so much for your kind words. Sorry only just replied but My husband has only just got out of hospital. He had 4 injections in the stomach, is that right?
Poor love is on 11 tablets now. I just hope and pray it works!!!
Thank you Aimee and Peace it's just that I love him so much and hate to see him suffer. I really don't think either of us realised when he was first diagnosed how serious it could get!!!
Do you think he does have a chance of remission? I so wish we could get back to some sort of normality!!!

 

[foffer1]

Hi
I started taking Humira after 25 years of crippling crohns related arthritis, it took 12 weeks to work and apart from the occasional flare up it is very successful. I can lead an almost normal life.
I hope it works as well for your husband.
Gentle exercise and stretching is also important for this condition as it does not respond to rest, I have found that swimming is best.
I'm not so sure about the guts though, I still have major problems but life is definitely better with Humira.
Best of luck
Andy

 

[Banrockstation]

Hi Foffer

I am so sorry to hear you have had to suffer with this for 25 yrs It is great to hear that the Humira has helped with the joint pain and that you are now able to live a reasonably "normal" life. This is what we are hoping for my husband. We know he will always have this condition but to stabilise his condition and get back to some normality is something we are hoping and praying for!
After reading your post I have suggested that he goes back to swimming too. It's a bit hard when his fistula discharges too much but hopefully once it calms downs he can go back to it. He is definitely not a resting type person!
Thanks for the luck, we need it. Take care BS

 

[MikeinBklyn]

Bankrock.......

I know what you and your husband are going through. I have had a very similar experience with my Crohn's over the last 15 years.

The Humira has changed my life. I am truly back to normal at this point. I had been on 20 pills a day and all the symptoms of Crohn's in the ileum. Then 2 years ago spread into the colon. Perianal fistula with an abscess, not fun. Two fistulotomys and the pain and suffering that goes along.

After being placed on Humira weekly...bam....gone.

Now it is just praying that the Humira keeps working.

Good Luck and please keep a positive attitude, it is so important!

 

[silveyk]

Dear Banrockstation,

I understand the agony you are going through...as I am currently in the same boat with my spouse. I am also a physician (which has its own pros and cons). Humira seems to relieve the arthritis rather quickly. For the intestinal Crohn's, it usually takes longer (weeks to months). The side effects of Humira haven't been too bad....headaches...shot-site pain...fatigue for a couple days...in comparison to the hell of a flare. Sometimes, if the Humira is partially working, but he is still flaring, you may have to push his docs to giving him weekly injections. I may have to do this for my spouse shortly...

I wish you and your husband all the best.

Dr. S