Anyone else on Humira??

[Rachelly]

Hi

My name is Rachel and i am 25 yr old.

I am currently going through a bad flare up of crohns disease (my first serious flare up since i was diagnosed 5 yrs ago). I have always ignored the fact that i have crohns and have lived the last 5 years without really knowing much about it at all. But i have recently experienced my first "official" flare up.

This flare up has been going for 5 months and my doc has kept me on Entorcort which has not made things any better. Last week the pain was so bad that i went to hospital. I was put on hydro-cortison (sorry not sure of the spellng) and then predisilone but neither seemed to help my inflammation and after having an MRI scan my doc has put me in HUMIRA (as both my bowles and colon were extremly inflamed).

I have been reading about it on the internet and am extremely scared and nervous about continuing to take it. I was given my first shot (4 injections) 2 days ago and my results have improved but the possible side effects scare me.

I understand that there are side effects with all drugs but when i read about HUMIRA is said that there have been cases where ppl have developed cancer of the blood. The thought of giving myself another injection in 2 weeks, which could cause cancer scares the living daylights out of me.

I dont now anyone else that is on this drug, i dont even know anyone else that has crohns disease in my home town and i just want some advice or any other reviews from other people living and taking humira? What side effects have you experienced if any?

I am so stressed about taking this drug that i am having trouble sleeping and the stress is not doing any good for me but what are my options? I cant continue to live in pain either?

If i hear enough negative comments about humira i may speak to another doctor and try something else.

SO any posts or opinions would be greatly appreciated.

Thanks heaps

 

[xJillx]

Welcome, Rachel! I am so sorry to hear you are in a bad flare. I have not taken Humira, but many people on the forum do and have great success with it. Check out the Humira Club sub-forum under Treatment. Lots of good info in there! But try not to stress about the side effects too much. Stress will not help your current state! And remember with side effects, everything has to be reported even very RARE cases. And with the rare cases who developed cancer, you don't know what other factors could be involved such as having a long line of cancer history in their family. But I know knowing this doesn't make the warnings less scary. However, untreated Crohn's is MUCH scarier! I wish you all the luck in finding what works best for you!

 

[Ian]

Hi Rachel!

I'm on Humira, and there are lots of others here who are too. Try not to worry about the potential side effects, the chances of you experiencing them are very slim and it sounds like the drug is working for you - if you're suffering it's probably worth the small risk! Maybe talk to your GI about your concerns, just to get some reassurence.

Good luck with it, it doesn't appear to be doing a great deal for me unfortunately but lots of people have had success with it - and personally I've had no side effects

 

[Mark63]

Hi Rachel,

I've been taking Humira for the last six months. I only suffer some very minor side effects such skin irritation that is well controlled with antihistamine, stuffy nose and occasionally, mild headache. I know that there are potentially serious long term side effects. Your Doctor should have talked you through these issues prior to starting the drug, this does not mean that they will be a problem for you. In percentage terms the risk is very low. Please talk through your concerns with your Doctor. At the end of the day your treatment is under your control and you have right to decline what has been offered and to seek an alternative. However, as far as I'm aware all of the heavy duty drugs used to treat Crohn's can potentially have serious long term side effects.

Mark

 

[ChefShazzy]

Hi Rachel;

I'm on Humira, too; Have been for about a year. I think it's going pretty well so far, I still have some bad days but overall, much better than I used to be.

Humira took 3 months to kick in for me. Stick with it before you decide if it's working or now. I worried about the side effects, too, but the benefits far outweighed the risks. The only side effect I have experienced are injection site reactions. Be sure your doc keeps an eye on you and has regular blood tests done.

Come check out the Humira Club, and we'll try to answer any questions you may have.

 

[dreamintwilight]

Hey Rachel!

Like others have have already mentioned, there's a thread called the Humira Club in the Support Forum where there are tons of people who are on Humira or just starting out the whole process. There are tons of success stories, so don't get bogged down on the negative ones (those seem to resonate more than the positive ones sometimes), which is easy to do. I am currently on Humira and it has changed my life tremendously since starting it. I was terrified of it at first and had a hard time sleeping because of all the worry. But it turned out to be not as bad as I had imagined. It gave me my life back actually

 

[ameslouise]

Hi Rachel and welcome!

I know how you feel about the Humira. I was scared to death to take it because of the serious side effects.

My doc explained to me that there in the general population, there is a 4 in 10,000 chance of getting lymphoma (the type of cancer associated with Humira). For those on Humira, the chances increase to 9 in 10,000. It doesn't seem as scary or as possible when you look at it that way.

I ended up going on the Humira for about 9 months. I am one of the rare ones that had absolutely no improvement on the Humira. Most people find some relief, and many find excellent relief and has given many a better quality of life.

I hope you are able to come to an easy decision and if you decide to go for it, that it brings you some relief and happiness.

- Amy

 

[CDDad]

Hi,
Here is another perspective - be afraid of not taking it. I never imagined how bad my Crohn's could get. Eventually leading to a drastic reduction in quality of life and findings of Dysplsia from years of inflamation. This caused a couple of surgeries and finally my Proctocolectomy with removal of my colon, rectum, and anus - with permanent ostomy.

Anyway, I don't mean to sound alarmist, but I never thought it would happen to me. So the right meds can help avoid this future for someone.