# Hey - Doctor considering taking me off all medication



## StaceyQ

Hey

i have not been on here for a while.

I am a bit concerned (sunds silly) but i have been doing really well for past 9 months or so and my consultant is on about if i am still web in Feb 2014 taking me of all medication. This is great but scares the hell out of me.

What happens if i get a flare i have to start all over again.

ANyone else had this?

i know its silly to be worried that im being taken off medication but i honestly cant be so ill again as i have two young children that only have me.
 x


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## Samboi

I've had CD for 20+ years and have always been on a maintenance medication. 
This includes during very long periods of remission. 
The only time I have been off meds is when the maintenance meds have ceased working and I've been transferring over to a new one - a trial and error process that has always been a very bumpy ride. 

If it's induced remission - why stop taking it? 

To be honest - for me personally - I would refuse to stop taking my meds. 
Without them - I get very very sick and it's always a very long journey back to good health.


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## Amy2

My daughter was diagnosed with Crohn's at 24 and after she achieved remission, has not taken any drugs, nor had any symptoms for 8 years.  (She went against her doctor's advice).  She followed the SCD for several years and now goes easy on starches, even though she says that she's no longer on the diet.

We don't know why people get into and stay in remission.  With my daughter, we know that it isn't any medication.

I can see why you are concerned though.  Let a sleeping dog lie and all of that, but the drugs may not be helping you and they are probably hurting you, at least to some degree.

It's a hard decision.  We've decided to keep our son on Pentasa indefinitely, even though it may or may not have anything to do with him being in remission.


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## shamrock15

You don't mention what your meds are - some of them probably won't work again if you need to go back, or at least that is the theory with remicade. Others just take a really long time to start up. Like samboi, I sort of like the job mine have done and very much don't want to entertain the thought of it slipping because I stopped meds.


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## kiny

shamrock15 said:


> You don't mention what your meds are - some of them probably won't work again if you need to go back, or at least that is the theory with remicade.


I think it's a brewing myth that remicade only works once, or you can't stop it or it becomes ineffective.

The first time remicade was given to people it was given just once and discontinued, and when needed it was given again, often months or years later, with success.

It's possible that some people develop resistance, but many do not.


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## Samboi

I had mine about ten years apart. 
First time - it induced remission literally overnight. 
Second round - ten years later - second infusion - induced a seizure. 
Never again!!! 
I thought I was going to die.


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## Samboi

I should clarify - first round - I had about 2 or 3 infusions. 
Decade later - only had 2 infusions. Second one was cut short when I had the seizure.


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## SarahBear

Personally I wouldn't risk going off the medication - and _definitely_ not this soon.  After three or more stable years, maaaaaaaybe, but absolutely not after one year.  Just being worried about flaring could stress you into another flare without your medication.  There are just too many risks, in my opinion.

If you're uncomfortable with stopping your medication, let them know.  Why do they want you to stop? Like Samboi said, it's typical to be kept on a maintenance medication.  Unless you're unable to find a medication that works to put you in remission _and_ doesn't cause harmful complications at the same time, you're generally better off staying on the medication.

:hug: I hope things go well!


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## Crohn's gal since 1989

StaceyQ said:


> Hey
> 
> i have not been on here for a while.
> 
> I am a bit concerned (sunds silly) but i have been doing really well for past 9 months or so and my consultant is on about if i am still web in Feb 2014 taking me of all medication. This is great but scares the hell out of me.
> 
> What happens if i get a flare i have to start all over again.
> 
> ANyone else had this?
> 
> i know its silly to be worried that im being taken off medication but i honestly cant be so ill again as i have two young children that only have me.
> x


My Crohn's put me into remission where I was drug free twice.  The current flare I am still getting over I deluded myself about for a long time compensating with my food choices.  After a while there wasn't a whole lot I could eat without it running straight through me and I was absorbing very little of the nutrients that I was eating.  It took a huge flare that put me in the ER to wake up.

My GI thinks that while I appeared well and in good health my insides had been "simmering," just waiting for the moment to make themselves apparent.  Because I was on no type. Of maintenance meds, I unwittingly let this go on unchecked and probably did a lot of the damage I am paying for now. (Resection 09/14/13.). It was a concern about my vitamin levels that prompted my GP to suggest a visit to the GI and a colonoscopy.  It had been 7 years since my last colonoscopy, and my GI was shocked at the damage that Crohn's unchecked had caused my intestines.

Needless to say I'm never going off my maintenance meds whether I'm in a good remission or not.:smile:


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## ronroush7

I was diagnosed 23 years ago and even when I was in remission I have never been off meds. 

 2


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## Novice

My mum asked my dr yesterday if it would ever be possible to get me med free and before shed even finished talking he looked like he wanted to shake her silly lol. He was very adamant that no matter how healthy you are when you become med free and you then get a flare youre fighting a whole new unresponsive monster.

do some research talk to another doctor, there are plenty of online support groups who offer q&a with doctors im sure plenty of people have asled this in the past so get some insight on how others coped when they flared after. ...

personally when I was new to the diagnosis and in denial my worst flares were when id stop taking my meds for like 6 months the. Iyd wipe the floor with me. Ill never go completely med free again.


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## Jennifer

I'm also curious as to what meds you're currently on. Its very likely that your current meds put you into remission and are keeping you in remission. Stopping them all could potentially put you into another flare.

Even after my resection I stayed on maintenance meds. 14 years later I had my first flare. I've been off meds before and flared within a year. 

Some people may do well off meds and if you do decide to go off all meds please at least have maintenance tests (like scopes etc) done regularly every few years (2-4 years, I wouldn't go longer) to make sure that everything is ok. My sister went off all meds years ago and says that she's doing fine and tells everyone she is but coming to me every couple of years and telling me that she's had bleeding off and on along with other symptoms is not remission. That's denial about how serious Crohn's disease is. 

We can't see it and we may not notice symptoms until they get really bad so no matter what you decide, stay safe by keeping your GI up to date with your symptoms and have regular testing done. As mentioned if you aren't comfortable going off all meds then say no. If your GI stops prescribing it and forces you to stop them then find another GI.


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## StaceyQ

Hey 

Im on azathriphrine, 50mg only. I have slowly been weaned off everything else i was taking.

It does scare me as the maintained dose i am on i believe it stopping me from flaring. No other drug has seemed to work but aza takes 6 weeks i think to start working, i do not want to have to go on steriods again, makes me so unhappy an i feel like i am starting to get my life back finally.

Thanks for your advice, i will tell my consultant that i do not want to come off them. No reason has been given apart from i am stable but the last four years before march have been awful, admitted at lease three times a year.


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## Essieluv

I can understand your fear; this is one of my greatest fears, to be honest. I think you should talk to your doc about a remission plan. Tell him your fears, and ask what his plans would be if you started to experience symptoms again. I think a maintenance med, such as mesalamine or something of the sort would be helpful and probably wouldn't hurt, but that is up to you. It's good to hear about your upturn in health, though!!!


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## shamrock15

What about asking your doctor to try reduced dosages or changing the frequency of the medication first? That way you won't need to worry too much about losing efficacy. It should let you know if the meds are maintaining the remission.


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## GOUK88

I would like to be off all meds. and yes, it scares me too, but having been on Humira & Azathioprine together for over 6 years, the long term possible side effects are starting to scare me more. Had several tests last summer and was able to go off Humira when my Rx ran out in September. Can feel the difference, so probably will need to stay on at least the Azathioprine, but considering surgery if I have a bad flare. 

Have been on Pentasa, Predisone, Entocort, etc.
Diagnosed July 2003


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## DGH

StaceyQ said:


> Hey
> 
> i have not been on here for a while.
> 
> I am a bit concerned (sunds silly) but i have been doing really well for past 9 months or so and my consultant is on about if i am still web in Feb 2014 taking me of all medication. This is great but scares the hell out of me.
> 
> What happens if i get a flare i have to start all over again.
> 
> ANyone else had this?
> 
> i know its silly to be worried that im being taken off medication but i honestly cant be so ill again as i have two young children that only have me.
> x


   I have had crohns for 18 years with 2 re-sect surgeries. I have symptoms very under control now and haven't taken any meds for many many years.. However. I have made all my choices through careful research and they have worked for me . Would be happy to share any advise desired based on my personal experience.
Good luck!


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## StaceyQ

Well as my new post, consultant didn't listen and have been in agony, not eaten for weeks. 

I refuse to see her again. I have a doctors appointment tonight to transfer consultants and see what they can do.


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## mdd

Good for you ! Some times your gut! Will tell you this doctor is not listening to me. Their are good doctors out their. I fired two doctors who did now know what to do and wanted to repeat test all over! Then one who did not know what I had just wanted to put a bag on me  To this day  the meds I'm on is  Ascol( Mesalamine)  that's all I've numbers of remission  I'm now in remission. But still take my pills. Others I cannot take. Take care:smile:Maria


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## StaceyQ

well my gp didn't listen either and gave me nothing to even slightly help. I have now gone privately and he think I may need an operation as there is so mush scarring tissue. I am petrified about this. Still I  have no meds to get started with and I have now run out of pain relief so going to be even rougher and struggle even more.


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