Humira go ahead or not??

[n00b]

I have been given the go ahead from my GI to start on Humira

I have been cleared following my blood tests for HIV, Hepatitis and TB and also my chest X-ray was clear of TB.

It is now my decision if I want to proceed with it and have booked in form y loading does in a couple of weeks.

To give you a bit of back ground, I have a resection last year and after a recent barium follow through it was confirm I have a long reoccurrence of active Crohns in my TI. They tried me on Azathoriprine but I could not handle the horrific joint pain (and my pain tolerance I like to think is quiet high). My GI then suggested the biologic route hence where I am now in just about to start the Humira

Basically I am now completely torn whether I should or not, I thought I was OK with the possible side effects (manly the cancer) but now I am not so sure< infact I am slightly bricking it!!!!

So I suppose I am just looking for people views on what I should do – my crohns is nowhere as bad as some poor souls on this forum and I am still able to work, travel, play ect. I am just playing it down and got so used to it ?????

I really am lost with it all at the mo and some advice/guidance, previous experience may be helpful.

Thanks all, this place really is a god send.

PS I have been given the choice of Humira or Infliximab... which to go for

 

[bobisacrohny]

You should also consider that Humira you inject yourself and Remicade it is done by a nurse.

 

[Purple]

Hi,

I'm a newbie to the forum and looking for some advice too!
I'm in the same boat as yourself as today my Dr advised me to read up on Humira and Infliximab and decide whether I want to try this. I've been on Azathoriprine for the last 3 years and it hasn't done much in the way of settling me.....I'm the same as you in that I would say I have a very mild cause of Crohns at the moment, in which my Dr agrees. Although I have so far read that the above 2 are used for severe cases of Crohns?! Which scares me a bit!
My Dr did say that Humira you would take yourself every 2 weeks and Infliximab go to the hospital once every 6 weeks to be on a drip for 3/4hours.
Although I have been given the choice of whether I want to do this I kind of feel like this is the only option as he pretty much said that I'm already taking just over twice my body weight in doseage of azathioprine hence upping the doseage even more would essentially be pointless?! As it could just keep going!
I was advised to go on NACC.org.uk for infor about them, can you advise anywhere you got info from? Let me know what you decide/how you get on! x

 

[SarahD]

Purple, has your doctor tested your Azathioprine metabolites, 6TGN and 6MMP? I was unresponsive to Aza initially, but it turned out I wasn't metabolising it in the optimal way, producing too much 6MMP (the bad metabolite) and not enough 6TGN (the good metabolite). My doctor added Allopurinol to my regime and reduced my Aza dose by 1/5. This has resulted in my 6MMP level dropping considerably, and 6TGN rising into a better range. I've been on this regime for about 7 weeks now and have definitely seen improvement in my symptoms and my blood test results.

I don't know about your specific situation, but it may be another option to the stronger meds like Humira and Infliximab.

 

[SarahD]

Hi n00b,

Sorry you've got a difficult decision to make. Bear in mind that the actual risk of cancer is still small in absolute terms on Humira or Remicade. I'm not sure what the actual figures are but think of it like this:

If being on humira or remicade gives you a 50% increased risk of cancer, but the risk of cancer in the general population is only 1 in 1000 (say), this means that your risk of cancer would be 2 in 1000 rather than 1 in 1000. So the chances of cancer are still really small overall. The 50% increase figure seems scary, but when you look at it in absolute terms the risks aren't actually so bad. Still, it's a very personal decision that only you can make. Also consider that leaving your Crohn's untreated leaves you at risk of developing complications too.

Since you Azathioprine didn't agree with you did your doctor mention whether 6MP might be a suitable alternative? It's a similar drug but sometimes people experience side effects on one but not the other. Might be something else to consider?

Sarah

 

[Alexandria.J]

n00b,

Hi! I have been on Humira for two years now. I had the same choice as you and decided to try Humira because I didn't want to go to the doctors every few months for an extended amount of time. The first year of Humira was amazing. I think I might have had one-three stomach aches that entire year. The end of the second year was and is continuing to be a bit more difficult. I have been to the ER twice in the last few months and my inflammation levels were slightly higher than average for someone with crohns. Im not sure if this means that my body is getting use to this dosage of humira and I may need to increase my dosages or if I am just having a minor flare.

I have looked at the scary stories that have to do with humira but I think that the benefits out weigh the risks. I feel more like myself now because of it!

Having to give yourself a shot even two weeks isn't fun but for me it has been much better than having horrible stomach pains everyday!

I hope this helped and I hope everything works out well for you!

Ali

 

[n00b]

Thank you for the reply guys

@ Purple
I have been given some information packs from my GI which are quiet useful, however they are from the manufacturers so tak alot about the positives but not so much on the possible negatives. However they are worth looking at so ask you GI about them.

@ Sarah
Thank you very much for your reply, you are right about the possible risks so thank you for putting in prospective.
We did discuss the 6MP however my GI seemed to think that my reaction to the Aza (horrific aching joints and blood shot/swallon eye) would be the same on the 6MP.

@ Alexandra
Again thank you for your comments and its nice to hear form somebody who is taking Humira and what thier experiences are.

I think I have 2 major concerns:

1) The possible increased risk of Cancer (although I think I am over this hurdle now)

2) - Deep down I think this is my biggest fear - I am running out of options and the biologic route is my last chance saloon. I am scared that it may only work of a couple of years and I am even more scared that it does not work at all???? Then I am screwed and my options are limited?

Would it best to save the biologic route until I absolutely need it? Or is that too risky as untreated I am more at risk. As I mentioned I am dealing with it quiet well at the moment and I think I am more stubborn than what I think I am (or I have suffered for so long I don’t know what normal is???)

I am sorry for all the questions and unloading all this crap on to you guys but you know what I am going through.

Thanks again

 

[Hanvet1]

We are in the same boat with my son. We are currently waiting on blood test results to start Humira. I'm not comfortable with all of the risks either. He hasn't had any symptoms lately other than a large abscess so the doctor says that his Asacol isn't working anymore.

 

[PK4881]

I decided to try Humira and was on it since last May. I decided to stop taking it because I was having a couple of side effects that bothered me daily. There's not a lot of info out there about starting Humira or just everyday living on it. I do recommend trying it and see how your body reacts to it.

 

[M101]

Hi there

I am in a similar situation - at the point of deciding whether to start Humira. I was diagnosed about 1.5 years ago and have not managed to settle my 'flare' since. I experience a fair amount of pain, bloating and go to the toilet about 10 times a day.

I have been on 6MP (Like Azathriprine, but I had to come off Azathrioprine due to bad side effects) for about 8 months and a scope a few weeks ago showed that my Crohns is still active and is now 'severe' so the 6MP isnt working.

I too had the choice between Humira and Remicade and decided to go for Humira because it seems a bit more practical. I have decided to go ahead with it because I will do anything to get better now and I have no other options. We did discuss Humira a while back but decided to leave it as a final option.. because once I went down that route, there would be no other treatment options. I am at the point now where I have no choice.

I found the info from the NACC website useful, as well as reading some pieces of info on here, but you need to be cautious because I found that reading negative stories and some peoples negative experiences can make it a bit frightening. I decided not to read too much into peoples negative experiences and try it out for myself. I was mindful of talking myself in to it not working / having bad side effects before I even tried. I also got an info pack from my hospital that is made by the drugs company, that included a DVD and some info sheets.

I think its all a balancing act - only you know how you feel and only you know how you can get through your every day life at the moment. For me, I have been struggling for too long and just need to get my life back!

Good luck in whatever you choose to do - happy to share my story once I start, please feel free to PM me anytime. I find its useful to talk to people in the UK because the NHS and our services are so different to the USA/other parts of the world!

Em xxx

 

[MikeinBklyn]

I've been on the H for 3½ years. It has completely changed my life for the better.

Now at 58 I feel better than I did at 28.

C scopes show complete remission which saved me from a resection. No side effects at all. Perianal fistula gone. High energy level and much more happier in general. What more can I say? I too was VERY worried about side effects. The long list of possible side effects is a must due to the litigious world in which we live.

I take my shot (pen) and go on with my day. I for one, am very happy being on Humira.

Best of Luck!

 

[DougUte]

I have been on Humira for over 2 years. I am in remission, verified by 2 different scopes. I feel like this disease is no longer ruling my life.

That long list of side effects - this is the very rare exception. We are talking something like a chance of 1 in 500,000 or 1 in a million. I figured I had a 100% chance of having Crohn's Disease (after my diagnosis and surgery) and a 2 out of 100,000 (0.002%) chance of getting cancer from Humira.

 

[bobisacrohny]

What about the need to go to a new employer, if able to work, in this decision? Will the new employer find out you are taking Humira, as you know how expensive it is, and what will happen? Anyone have this experience? Can you bring your old insurance with you so they don't have to find out? The first 6 months is a probationary period so it is possible they may not want a drain on their insurance and just say that you are not working out? Any feedback???

 

[alyssa519]

I was started on Remicade/Infliximab very soon after my diagnosis. My Crohn's is everywhere in my GI tract and was not very responsive to steroids, so I was told this was pretty much my only option. I also take 6MP but my bloodwork shows that it isn't really helping me, it just helps me absorb my infusions better.

Remicade has been a wonder drug for me so far. I've only been on since August, but I go for my infusions every 6 weeks and it put me into remission within weeks. I chose remicade because they told me that when it fails, I can then go to Humira. They told me if I started with Humira, you can't go back to remicade if the humira doesnt work and unless new treatments are made, i'm pretty much out of options.

it's definitely scary to start biologics, but I think what is scarier is thinking how miserable we would be without them. My infusions are actually fun (can I say that?!). I have a wonderful nurse and I bring friends and I get benedryl and we look at goofy magazines, watch TV, or I nap. I look forward to them because I know that is why I'm healthy!

 

[my little penguin]

You can go from humira to remicade .
You can not take remicade again if you have an allergic reaction to it even if you stop fir a while .
DS has been on both .
Remicade worked well before he reacted and now he is on humira.

Good luck

 

[Scaryman]

Yup, Remicadee infusions reactions mean your done with it, Humira- all i can say is read the black label, ( I think its over kill) But familiarize yourself with the possible side effects. Then that should help your decision process.