Biologic treatments?

[Grugsley]

Just briefly, I was diagnosed in 2009... was put on pentasa 2g sachets twice a day and pariet as needed.... was fine for a while then the doc decided imuran would be a good one to try... it didn't agree with me at all I wound up in hospital with a severe virus because my immune system was suppressed too long even though I was only on 2 pills a day! Went back to pentasa.

Then last year my specialist decided surgery was a good option considering I was going to volunteer for 3 months in Africa... I had a bowel resection in May 2012... I never had any relief from my symtoms had quite a long recovery time... and then was unwell the whole time I was away...

had a colonoscopy to see what was going on when I got back home to Australia in Dec 2012.... showed there was a flare up in a different part of my bowel, so i was given the option of doing a short course of prendisilone or trying imuran again...I've been on one pill of imuran a day since Jan this year.. It does nothing, I have felt no change. I went and saw my GP, his daughter has Crohn's conincendetnally so he has a really good understanding of what's happening... he mentioned biologic treatments... some type of injections? he said they put his daughter into remission.... what are these treatments? Would i qualify? and what are the side effects?

 

[kh216]

The three most common biologic treatments for Crohn's are Remicade, Humira and Cimzia. Many people with Crohn's have been helped by them. Humira and Cimzia are self injected into the body. Remicade is given by infusion. I am personally not on a biologic medication but many people are on this forum are. If you like, please check out the Remicade, Humira and Cimzia subforums (which are listed under Treatment) for more info.

 

[lizzy16]

Hi Grugsley,

Sorry to hear you're still flaring. The two most common biologic treatments are Humira and Remicade (Infliximab). There is a sub forum about these treatments you can check out, here are the overviews of both medications -

http://www.crohnsforum.com/showthread.php?t=29394

http://www.crohnsforum.com/showthread.php?t=29393

Humira involves self injections with a pen (or syringe) every two weeks and Remicade is an infusion that's done in hospital around every 8 weeks. They supress the immune system and come with some possible risks and side effects which you can read about. A lot of people have had great success with these treatments in putting their Crohn's into remission.

I started on Humira two weeks ago and so far I haven't experienced any ill effects. Some people notice fatigue and headaches as side effects. I've already noticed an improvement in my Crohn's symptoms and hope that this treatment can keep my off steroids.

In Australia, you will need to qualify for these treatments as Medicare will subsidise the costs of the medication. They are quite expensive but on the Medicare scheme you will only pay around $30-35 per month for Humira (sorry I'm not as familiar with the cost/process for Remicade). Your doctor will administer a crohn's disease activity index which involves questions about the number of loose stools, general wellbeing etc. and to qualify you'd need to get over a certain score.

Hopefully you can get some information from this site and your doctor, do you see a GI specialist for your Crohn's as well as your GP?

Take care x

 

[Grugsley]

Thanks Lizzy!

My GP is looking an Infliximab... that's what it's called here anyway. I do see a GI, I'm seeing him next week to discuss this... I'm a bit perplexed/angry to be honest because I've been in a flare up for nearly a year now... I was talked into having a resection last year, which was essentially a failure because I flared in a different area pretty much straight away.. and I can't tolerate imuran... yet my GI has never mentioned these biologic treatments... and according to my GP who is very onto it... they've been around for a while!!!!

I'm just hoping I will qualify for it because I've had a failed operation and I can't tolerate imuran.... but money-wise I have private health care and I have very supportive parents who will help me out with anything health related as I'm 22 and still student. My GP was shocked to hear how sick I've been... I think being young I kind of ignore it and downplay it... but he's written a letter to my GI to get things going so hopefully next week I'll have some answers! I really don't want to have to take prendisilone

 

[JenGC]

Hi, I am in Australia and though waiting for a diagnosis for my gastro issues, have had experience with biologics and Medicare.

If your GI has never before mentioned that they exist, he may not be terribly comfortable with them (my Rheumy doesn't like them and discouraged me as much as he could.... But I read my research and it was clear they were worth a go in my case... But I digress). It is possible you will need to advocate very strongly if you want them, but.....

You really need to do some research to decide if you do or not. My Rhuematologist talked up the side effects as being terrible - and whilst I acknowledge there is a chance of some nasty ones, my personal risk assessment was that those chances were still better than dealing with uncontrolled disease (in my case arthritis with a few nice extras like inflammation in the eyes).

I take Enbrel, and have found it fantastic, however the potential side effects can be used to scare you by a practitioner who thinks its a bad idea (I'm not suggesting they don't have your wellbeing at heart - my Rheumy simply didnt understand the lack of function my uncontrolled disease was causing, and thought that it was better to struggle on than to have a very slim chance - maybe 0.5% per year - of getting an infection that might put me in hospital) . Remicade (infliximab), for example, has a significant list, including unexpected anaphylactic shock even months after having many normal infusions.

As such, whilst I wouldn't be without my biologic, it is a decision you should do some research / get some advice you trust (maybe from your GP?) before deciding.

Lastly, Medicare subsidies can be a real pain to navigate (particularly if your GI is less than keen). Google 'crohns remicade Medicare' and go to the search result for medicare.gov.au so you can see the criteria and understand how to answer the questions 'correctly' for eligibility.

Just to put it in perspective, without PBS subsidy, my Enbrel was $1,800 for 4 weeks. I understand humira is about the same, and remicade is more expensive. Private insurance doesn't normally pay anything, so the PBS subsidy is pretty important if you can get it.

 

[David]

I've moved this from our Ask the Experts forum to our Treatment forum as I feel that (as you can see) answering this question is well within the scope of our community members.

 

[alex_chris]

was fine for a while then the doc decided imuran would be a good one to try... it didn't agree with me at all I wound up in hospital with a severe virus because my immune system was suppressed too long even though I was only on 2 pills a day! Went back to pentasa.

so i was given the option of doing a short course of prendisilone or trying imuran again...I've been on one pill of imuran a day since Jan this year.. It does nothing, I have felt no change.

Hey, Grugsley, folks above already explained biologics and what they do above. But I just wanted to comment on a few things that I noticed in the above.

Yes, azathioprine (imuran is the brand name, the drug is aza) suppresses the immune system, but while you are slightly more likely to catch an infection, once aza is dosed correctly it is very unlikely that it increases the chance of an infection like the virus infection you had (don't get me wrong, your severe virus infection definitely wasn't a nice experience, what I am saying is that the aza might not be the cause, just made it slightly more likely you get it). Personally, my experience with many years of aza was actually that I am less likely to catch a virus or other infections than before.

Two things on your current medication of one tab of aza per day. First, aza only has an effect long-term, it starts really kicking in 3-4 months after you start. Second, are you really prescribed just 1 x 50mg per day? That seems extremely low. The recommended dosage should lie between 2 and 2.5mg per kg. Unless your regular blood tests since January showed that your white blood cell count was always close or slightly below the lower healthy range, you are taking a dosage that is too low and just can't work.

Lastly, why in the world would they give you an option between pred and aza? Aza doesn't kick in for so long, if you have a flare up the standard treatment is with a cortisone drug like pred to treat the short term flare while you start with Aza.

I went and saw my GP, his daughter has Crohn's conincendetnally so he has a really good understanding of what's happening... he mentioned biologic treatments... some type of injections? he said they put his daughter into remission.... what are these treatments? Would i qualify? and what are the side effects?

I won't elaborate on biologics, you already got replies above. Here is just one thing to consider. You are just 22. Although you had surgery once (like I did) and currently have an active Crohn, you should consider whether you really want to go for biologics before you try other options first. Infliximab (Remicade) is definitely one notch above in severity of treatment to immunosuppressives.

How else are you managing your Crohn? Do you have a good sense about what you can eat and what not? Are you doing sport? Do your blood tests show any other deficiencies? Stress level on a general basis? Any patterns to when you feel cramps and pain?

 

[Grugsley]

Hi Alex.... sorry I realised i wrote that response in a bit of a rush... I think I left out a few things... I am on 2g pentasa sachets twice a day and have been since 2009 when I was diagnosed.

I know it was definitely the imuran that caused me to contract (or possibly have a reactivation) of the virus because I was referred to a specialist and it showed my white blood cell count was horribly out. Since then I've always been so scared to try it again... but my gastro loves imuran and he says I'm the only one of his patients that seems to have such a low tolerance for it. I chose against prendisilone because I feel that the possible side effects are really bad and I don't want to complicate things further by having to deal with those... in saying that now 3 months later I'm pretty sick...I've left work a couple of times lately and had to leave uni because I've had such bad pains... it's a different kind of pain because the flare up has come up in my large intestine.. somewhere I've never had Crohn's before and this was immedicately after my surgery for my terminal ilieum... pretty bad luck i guess. I know I'm sikcer than usual because now everything I eat makes me sick... not just some things. I eat a really bland diet at the moment and drink lots of water. I'm losing weight too.. but nothing too drastic.

We put me on 2 pills of imuran a day in Feb this year.. but after three weeks I had my regular white blood cell count test and it was out again and I even got a weird fever.. so had to drop back down to one pill... the doc doesn't know why imuran doesn't seem to agree with me.

Apart from Crohn's I'm a pretty healthy person.. I exercise a lot and play tennis.. I work quite a bit and I'm studying my masters at the moment. Im having an iron infusion this week actually because my iron has got really low and I also get b12 injections.. I've been really badly fatigued and run down the last month but the GP said it could also be having active inflammation.

I'm seeing the GI next week.. I think he's going to make me do a course of prendisilone... but isn't that only going to be a short term solution anyway?

 

[alex_chris]

Hey grugsley

Really sorry to hear things are that tough with your Crohn right now. Yeah, pred (actually any cortisone based drug) is no solution, but short term to get your inflammation under control it definitely should be used.

The important thing is that you get to remission. If immunosuppressives wouldn't work for me and I would have a constant active Crohn I would also start biologics, no doubt.

I hope things get better for you. Don't dismiss your GI's suggestion of a course of pred, cortisone is after all a really effective way to treat acute inflammation - and it takes a while until remicade can kick in.