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leithcote

leithcote

Joined
Nov 27, 2010
Messages
161
I'm waiting for confirmation of a CD Dx next week, after having several biopsies taken during a recent colonoscopy. My Consultant is pretty sure that I have either CD or IBD and is just "dotting the i's and crossing the t's" - his words not mine (!)

But my question is, where do you normally start with medication?

After doing quite a lot of reading around, both on this forum and elsewhere, I'm pretty keen to avoid having to take corticosteroids, in particular Prednisone - due to the many side-effects and difficulties with tapering off it.

As I understand it, I'll probably be put on one of the Mesalazine drugs initially and then see how that helps with my current flare-up - then escalate up to steroids, then immuno-suppressants if necessary. Is this the normal treatment regime?

Should I definitely ask for Entocort over Prednisone if we get that far?

I'm probably jumping the gun a little, and worrying a little bit too much - but I'd kind of like to know what I'm going to face in the next few weeks, and am trying to get as much information as I can.
 
In my experience i've only ever taken steroids during a bad flare up whilst waiting for a drug to get into my system and get to work then taper off the steroids. I dont think steroid's are usually seen as something to take on a constant basis. I started of on a high dose on pentasa (which i think is in the mesalazine catergory) which controlled things for a year until i had a bad flare up and had to start on azathioprine. (which is an immuno-suppressant)
If you are currently having a flare up they'll start you off on a dose on prednisolone or something similar whilst you start to also take pentasa or whatever they decide to try first. then slowly reduce the steroids untill you dont need them at all.

although i guess It all depends on how bad it is and where abouts it affects you but thats what happened with me anyway.

I wouldn't worry to much about the medication, It will only get you more stressed out which in turn wont help with your flare..

There are side effects to steroids but they may or may not affect you , and if they did im sure they wont be anywhere near as bad as what an untreated crohns flare would be like.


Hope this has helped ease your mind a bit anyway!
 
Hey,

I don't know the severity of your symptoms, but usually the doctors prefer to start with the most 'mild' (if that's the right word) drugs and then work up the scale.

Personally, I was initially given a high dose of prednisolone after a clinical diagnosis of crohn's in a&e. Once I'd be properly diagnosed I started on asacol (mesalasine), when that didn't work I was put on azathioprine (an immuno-suppressant) too. After 8 months that still hadn't done anything, except make my hair fall out, so I was approved for infliximab (remicade) which is super expensive and comes with an insanely long and scary list of possible side effects! However, this has been my saviour and has put me in remission. I personally haven't had any side effects so far (touch wood) and am due to have my 8th infusion (I think) on tuesday.

I don't think you're jumpin the gun. It's good to be informed about what to expect. Don't freak yourself out too much worrying about what might happen in the future though.
Pred is both a wonderful and horrible drug at the same time. It can make you feel better so quickly, but the side effects can be pretty crap. I was most paranoid about the moon face and growing facial hair, which coupled with the hair loss from the aza wasnt a good look for a 24 year old girl!!

Anyway, I'm rambling. What I mean to say is, by all means gather as much info as you can from sources you trust, but don't let it eat you up worrying about it.
 
P.s. Just noticed, you live in Brighton, that's where I come from! Although I live in Bristol now. I miss the sea :-(
 
Lucinda - thanks for the advice. Oddly and rather strangely I'm actually from Bristol (well, Yate) and now living and working in Brighton. Sounds like you've had rather a rough time of it - glad the Remicade is working well for you.
 
Hi Tony,
So sorry you have been so sick! I think your meds are going to depend highly on what you come up with for a DX. UC and Crohn's do take different meds at times. For me I was started on prednisone with asacol, then with a rediagnoisis from UC to Crohns they tried entocort (very expensive and ineffective) then I went back to Pred. I loved Prednisone for quite awhile. It can stop a flare in its tracks, getting off of it without a flare is the issue. I can't take it now because of the side effects from years of being on it.

I wouldn't stress over the meds, stress is the enemy with any ibd. Make sure you trust your gastro and go with what he says. In general you start with the mild ones, but if you have a nasty case they have been known to start people on the big guns (Immuno-suppresents or biologics).

I think you are in the right place to get info and support! Feel Better soon!
 
just curious, isn't it 'Mesalamine'?? or are there many drugs that sound just like that..? haha. i'm sure there are..

anyway, i guess i've got a nasty case ('aggressive', as my doctor said) because i'm on an immuno-suppressant and anti-inflammatory. although (knock on wood) it doesn't seem like it's very aggressive. i know i've got the disease, but compared to many other stories i've heard, it's nothing. i was started on Azathioprine and Asacol in June of this year and that's the beginning! hopefully the list of meds doesn't get too long..i'd like to avoid anything else, i didn't want to have to take any meds AT ALL..but i guess that's next to impossible for me.

any news, Tony??
 
Rebecca, you are completely correct. The British and International name (as defined by the World Health Organisation) is Mesalazine. In the US however, it is known as Mesalamine. Unusual, because it's usually us Brits that like words spelt with an 's' over those with a 'z'. Type Mesalazine into Wikipedia for more info...
 
Ok I just have to say, just to make life more difficult the US government has to change the names of meds from what the rest of the world uses? BAH I think I may be grumpy!
 
leithcote said:
Lucinda - thanks for the advice. Oddly and rather strangely I'm actually from Bristol (well, Yate) and now living and working in Brighton. Sounds like you've had rather a rough time of it - glad the Remicade is working well for you.
Click to expand...

Heh, that is weird! I drove through Yate the other day on a massive detour when the M4 was closed between 19 and 18. Grrr.
 
I know, I know (!) Unfortunately, it does seem to happen with all sorts of things, and not just the meds!

Nica said:
Ok I just have to say, just to make life more difficult the US government has to change the names of meds from what the rest of the world uses? BAH I think I may be grumpy!
Click to expand...
 
leithcote said:
I'm waiting for confirmation of a CD Dx next week, after having several biopsies taken during a recent colonoscopy. My Consultant is pretty sure that I have either CD or IBD and is just "dotting the i's and crossing the t's" - his words not mine (!)

But my question is, where do you normally start with medication?

After doing quite a lot of reading around, both on this forum and elsewhere, I'm pretty keen to avoid having to take corticosteroids, in particular Prednisone - due to the many side-effects and difficulties with tapering off it.

As I understand it, I'll probably be put on one of the Mesalazine drugs initially and then see how that helps with my current flare-up - then escalate up to steroids, then immuno-suppressants if necessary. Is this the normal treatment regime?

Should I definitely ask for Entocort over Prednisone if we get that far?

I'm probably jumping the gun a little, and worrying a little bit too much - but I'd kind of like to know what I'm going to face in the next few weeks, and am trying to get as much information as I can.
Click to expand...

I'd suggest you look at drug classes rather than specific drugs -- often there are a number of medications that act on the same biochemical pathway; within a class, one drug may work best for one person, a different one may be better for a different person. The only way to often learn this is through trial and error; would suggest you make sure you're aware of side effects of the drug you ultimately take before starting it, so that you can watch for side effects known for that drug.

You're right about steroids, no doc would prescribe them long-term unless it was the most severe case imaginable and other medications had not improved symptoms -- side effects include obesity, thin skin, immune suppression (prone to sicknesses), osteoporosis (low bone calcium = more prone to breakage) etc. They're normally only used on a short term basis to get you into remission.

Also, drug-drug interaction may occur with some possible medications such that they would not work as well, or you'd need to have dosage adjusted, based on other medications you're taking now.
 
Hi Tony. I'm not sure if you are having a 'flare-up' or not....but IF I WERE YOU, I would start with the lightest drug only if needed and run straight for the alternative world which is all covered for you over there, right? Find a Chinese herbologist/Accupuncturist or naturapath and cure yourself that way instead of winding up in a viscious cycle of side effects from the drugs that only manage Crohn's. And, you can straddle both sides of the fence. Google Crohn's and the word alternative and you will find another world out there. Maybe investigate your area + naturapath+digestive...something like that. I don't know about you, but I'm not buying into this 'no cure' business!

Tracy
 
CMunkeez said:
Hi Tony. I'm not sure if you are having a 'flare-up' or not....but IF I WERE YOU, I would start with the lightest drug only if needed and run straight for the alternative world which is all covered for you over there, right? Find a Chinese herbologist/Accupuncturist or naturapath and cure yourself that way instead of winding up in a viscious cycle of side effects from the drugs that only manage Crohn's. And, you can straddle both sides of the fence. Google Crohn's and the word alternative and you will find another world out there. Maybe investigate your area + naturapath+digestive...something like that. I don't know about you, but I'm not buying into this 'no cure' business!

Tracy
Click to expand...

I'm with you Tracy, This "no cure" notion is crap!!! It is only talked about by the doctors who have NO cure, only poor disease management at best or people who are quite happy being sick and complaining about the things they would like to eat. Don't do as I did Tony and endure 15 years of suffering because I thought the doctors were trying to cure me. Take the drugs the doctors offer for relief but research and more research is what it takes to find what works for you but you will reap the benefits if you TRULY want to get better.


Peter
 
As an update... Officially diagnosed with Crohn's as of yesterday. Will be starting on 4 g of Pentasa (Mesalazine) a day for four weeks, and see how that goes.

As an aside...

I afraid I'm a complete cynic when it comes to 'alternative' therapies - especially as my day-to-day job is actually as a scientist researching mechanisms of DNA repair, and helping to develop new drugs for the treatment of Cancer.

I've seen the fantastic results that some of these 'new and upcoming' as well as existing drugs can produce – something that I honestly can't say for those people I know that have gone done the 'alternative route'.

So I for one shall be sticking to the mainstream. Plus, with the ongoing research into CD and IBD, who knows what is just around the corner in new therapies and treatments?
 
leithcote said:
As an aside...

I afraid I'm a complete cynic when it comes to 'alternative' therapies - especially as my day-to-day job is actually as a scientist researching mechanisms of DNA repair, and helping to develop new drugs for the treatment of Cancer.

I've seen the fantastic results that some of these 'new and upcoming' as well as existing drugs can produce – something that I honestly can't say for those people I know that have gone done the 'alternative route'.

So I for one shall be sticking to the mainstream. Plus, with the ongoing research into CD and IBD, who knows what is just around the corner in new therapies and treatments?
Click to expand...

Hi again Tony, Good to see you are into medical research although I don't think any pharmaceutical companies are about to "cure" anyone of Crohns disease. If they cure us all with a simple pill, who would they sell their existing or next symptom depressants to ?? Hopefully one day Tony you will get fed up with the viscous cycle of drug taking you are about to embark on and seek out the real cure through diet.

Peter:goodluck:
 
Interestingly cynical view Peter...

Perhaps we should dial back and stop all the medical advances in the world... and welcome smallpox back into our lives - 'cause that was so cured by simple dietary changes.
 

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