Crohn’S Disease

[ethandron]

Anyone suffer with the above? What treatment are you on?

[chrissa1]

My daughter suffers from this and she is now on Infliximab. It’s working for her and she hasn’t had any flare ups since she started and it’s been two years now.

[ethandron]

That’s great chrissa, long may it continue for her.
I had five infusions of infliximab which worked great. Then there was a delay as I had to see a dermatologist due to what they thought was psoriasis brought on by it. Turned out it wasn’t psoriasis but because of the delay I built up antibodies and had a severe reaction to the sixth infusion and can’t go back on it.
Waiting to hear what’s next..

[chrissa1]

Oh that’s a shame ethandron. Now you come to mention it ,y daughter has had slight itchiness of her skin, which she has taken antihistamines for. I wonder it this is the same thing as you?

It doesn’t bother her greatly though.

Keep well. xx

[Bigbad]

My daughter also has Crohn’s.
She has fortnightly (self) injections of Humira.

[ethandron]

Chrissa, turns out my skin problem was numular dermatitis which eventually cleared up with treatment once infliximab was discontinued.
Bigbad, I was hoping that was what I could have but I can’t because the antibodies would cause the same reaction I had to inflixmab.
Running out of options really.

[Bigbad]

It’s certainly made her immune deficient. Unfortunately, one of the prices to be paid to keep flare ups at bay.
Hope you find a solution soon, ethandron.
Take care.

[Rockrose]

My stepsister has but I’m afraid I don’t know her treatment.
But, I’m sorry to hear you have not been well xx

[Scarlett]

I had ulcerative colitis for many years and managed to get rid of it. The doctors said it was impossible and now they say it is possible. I did it through fasting and finding out (Yorktest) what foods I was intolerant to, and cut them out. I did a 6 day water fast which I really think was the turning point. It's been shown that this can generate new immune cells and recycle old broken ones. I don't take any medication. I actually didn't take any for most of the time I had UC as it made my diarrhoea worse. I had steroids when it was really bad. I've now been okay for 7 years.

[Bigbad]

My daughter had a letter today, telling her that her injections were being changed to something called Imraldi.
It’s a cheaper copy (or biosimilar, to use the correct word) of Humira.
I know you said that you can’t have Humira, ethandron, but I wondered if Imraldi may be worth investigating further for you.

[ethandron]

That’s interesting Bigbad, I’m sure your daughter will be fine on the new biosimilar stuff.
It was in the news round about October last year, don’t know if you saw it, that the NHS will save something like £300 million a year now the patents have run out on many, if not all, the biologics and people switched to the biosimilar versions.
There’s been some suggestion of putting me on a combination of azathiprine and allopurinol, which I’m not altogether happy about as aza was the second drug they tried me on and my liver enzymes went through the roof so it was stopped. I had a colonoscopy last week and am waiting for an appointment with the consultant to discuss it all.
How old is your daughter if you don’t mind me asking? Does anyone else in the family have it? I’m the fourth, two are in their 30s and have had it since their teens, an elderly aunt of 86, and then me diagnosed at 62.
Interesting you got rid of your UC Scarlett.
Thanks for your good wishes Rosie, and thanks everyone for your replies xx

[Bigbad]

Hi ethandron.

Nobody else in the family has had Crohn’s, and daughter is 28.

We now know that it started during her early teens, but she spent all her teenage years being told by both NHS and private, that there was nothing wrong with you/you’ll probably outgrow it/it may be IBS.
When she was about 20, she was away from home on a course for work, and became very ill.
They thought it was appendicitis, so removed her appendix, and this is how Crohn’s was discovered. This is about the time the illness really took a hold.
She spent about 3 years on different combinations of tablets, all of which made her worse. (Because I’ve seen how debilitating this illness can be, I really feel for you).
Then they put her on Humira.
It gave her her life back.
If I sounded a bit ‘off’ when I described Imraldi as a “cheap copy” it’s only because I’m concerned about the change!
Having said that, It’s thought the Crohn’s is getting worse, and she’s certainly lost a lot of weight. She had a scan (can’t remember what it’s called, but it’s the one where you have to drink a jug full of the yucky liquid first) last November.
Haven’t heard anything since, so I’m hoping that it’s not bad enough to cause any concern.
I have the Humira delivered to me, then take it to her in a medical cool bag.
Delivery due on Friday. I wonder if it will be Imraldi or Humira.

Do come back and let us know how you are doing. I’ll be thinking of you.

[ethandron]

Oh heck, Bigbad, your poor daughter, I do feel so sorry for these youngsters. And you feel it’s getting worse, poor girl. Hopefully there are other options for her going forward.
You didn’t sound ‘off’ at all, it’s a big step to change meds for something which can be as devastating as crohns. To be honest, I thought crohns was just a bit of diarrhoea...until I was diagnosed. I sat in the IBD nurses office, bawled my eyes out and asked why, if it’s was ‘just crohns’ did I feel so awful :\
I truly hope your daughter is ok, both with the biosimilar and that the crohns isn’t ramping up. Thank you so much for the crohns chat, it does help xxx