Entocort - long term treatment?

[Wajiha]

Hi all.

I have been on Entocort, Pentasa, Salofalk, Imuran, 6 MP and more recently Humira for crohns.

The only thing that seems to work is Entocort - which I was on for most of 2011 and no issue. So much so - both MRE and Colonoscopy showed nothing during that year.

All symptoms have returned since moving on to immunosuppressants and particularly humira. I am also constantly struggling with chest issues. Never have I had that before in my life.

I want to know about those with crohns on Entocort for a long time and whether you have been advised to do so? My GI said that entocort causes osteoporosis in long term use and therefore took me off it.

I'm also trying to work out if in fact the reason the entocort works is because it is stimulating the adrenals? Anyone else had this thought or any research about Crohn's and adrenal stimulation as a solution?

Many thanks for you time for reading this post. At my wits end with a ongoing flare for 5 weeks.

 

[DustyKat]

We haven't used Entocort at our end.

Entocort is a steroid in the same class as Prednisone. The difference is Entocort is designed to work in the gut and therefore it has far less systemic effects compared to Prednisone but that is not to say that it doesn't have systemic effects because it does. That is why your GI would be loathe to prescribe for an extended period of time.

Entocort actually suppresses your adrenal glands when used for lengthy periods of time which is why you need to taper and therefore avoid an adrenal crisis.

Good luck, I hope you soon find some lasting relief!

Dusty. xxx

 

[nogutsnoglory]

Entocort can be very helpful but it is considered a bridge drug to carry you over till you get on a drug you can take long term. Unfortunately even though Entocort is safer than Prednisone it still does have an effect on the body and is dangerous if used too long. When did you start Humira? It can take a while to kick in but hopefully will manage your disease effectively.

 

[Wajiha]

Thanks for both replies. Greatly appreciated.

I really appreciate the information re: prednisone and entocort difference. I have had prednisone for another auto immune disorder in the past and it completely cleared up.

I have been on humira since February. Feels like it works in the first few week no prob, but by the end of the second week, I am counting the days till the next shot.

In more pain than ever and can barely eat. Never had it this bad before.

 

[Clash]

You should have the option to shorten the schedule or up your dose. Alot of times the doses for biologics like Remicade or Humira have to be tweaked a bit for you to get the most out of the treatment. The entocort may dampen the inflammation enough that when you taper off Humira may be effective at it's current regimen if not you may want to consider asking about tweaking the schedule or dose.

I hope you are feeling better soon!!

 

[Savannah's mom]

My 10 year old daughter has been on 9mg's on Entocort since Sept of 2011. Every time we see her GI I express my concerns about all the meds she is on and every time he assures me they are safe.

 

[Johnnysmom]

It a matter of weighing the benefits with the risks. We have a friend who has Addison's disease and needs to be on Prednisone for the rest of his life. So there are people who do stay on Prednisone. I would get as much information about long term effects and have a discussion with your dr. about risks vs benefits. Hopefully, while you are using the Entocort and keeping healthy you can find something to take its place.

 

[Wajiha]

Thanks so much for the replies - it makes this thing feel so much better that one is not all alone.

I have learnt this morning the chest thing is in fact asthma - at 37 to develop it is just unbelieveable. But the less I am outraged the better I will be to cope with each new and wonderful issue.

Day 3 and the entocort has still not exactly started to work. I really appreciate the tweaking advice with the biologics - I think this is why I am in the state I am in. The entocort stopped straight away when I started humira and that has mucked this whole thing up.