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Crohn's Disease Forum » Treatment » Maintenance Meds


09-28-2010, 02:08 PM   #1
Dallies
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Maintenance Meds

Two different doctor's have given us two different opinions on maintenance medications. Meg has had surgery, is in remission and has been told by one Doc to carry on taking azathrioprine for 5 years and the other Doc said it may be that she can stop taking it altogether as she has no active Crohns.

Just wondered what your opinions are on this?

Many thanks xxx
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

Meds: humira

Surgery:hemicolectomy June 2010
09-28-2010, 02:40 PM   #2
Lisa
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I used to go totally off meds while in remission - and each remission lasted a shorter and shorter time (from multiple years, to a couple, one, months etc).......

You could try going off since her diseased part is gone.....and if she starts to show any kind of a re-occurance you could start meds again?
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09-28-2010, 02:42 PM   #3
Jennifer
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Crohns is a chronic illness and should be managed with medication, especially after having surgery. Just because there are no sores or noticeable inflammation doesn't mean the disease is not active. The second doc almost makes it sound like surgery cured the illness for now which it does not. I took Asacol and 6MP for years after my surgery and the only reason I'm not on them now is cause my insurance is a piece of _________ sometimes. :P
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09-28-2010, 03:23 PM   #4
Nyx
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I'm currently not on any meds and haven't been since my surgery in December last year. I'm going to go med free for as long as I can, but I think I may have to go back on them at some point in the near future. I'll find out after my colonoscopy in November.
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09-28-2010, 03:31 PM   #5
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Tough call. My first resection I was on Entocort for 7 years. And they say the best way to keep it at bay (my current gi) are the finding of Flagyl for 2 weeks after and imuran to keep your body from fighting itself. I know no one wants to be on meds, but a low dose of AZA could help. Hey I recommended her surgery and she did well , that after part I am not good at. Just from what my Gi says. Hope you guys make a decision. Let us know!
09-28-2010, 03:40 PM   #6
Dallies
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Thanks everyone for your replies and Pen My husband and I have just been chatting about it. She is still taking 100mg of AZA daily and we are seeing the hospital again in 8 weeks time: until then she is to keep taking this dose until they agree to either stop it or carry on. (When they get together and agree that is) I would surely think that taking a low dose would be better than nothing at all!!!??????????? One said if she gets any Crohn's symptons at all then they would deal with meds then and colonoscopies etc she is having regular blood tests because she is taking aza.
09-28-2010, 04:03 PM   #7
seaofdreams
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In all honesty, even if I wasn't experiencing a single symptom for years, I would still stay on some sort of maintenance medication. It's an unfortunate inevitability that the inflammation is going to flare again and I would rather keep it at bay the best I can for as long as possible, even if that means staying on meds.
I'm glad to hear Meg is doing so well
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09-28-2010, 04:14 PM   #8
DustyKat
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Hey D,

As you know Roo has been on 50mg of Imuran since her surgery 4 years ago. At the time this dose was prescribed she weighed only 34 kilos. Since then she has grown both in height and weight and they have not adjusted the dose because she remains well controlled.

Now this is where my personal beliefs come into play, and I say that simply because not everyone has the same opinion as I do. I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Roo's surgery put her straight into remission and she has stayed there but I view Crohns as a disease that is lurking and waiting to strike when the time is right so if I can regulate that response to some extent then that's what I will do. I see Imuran as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.

Another point I think worth mentioning is while ever Roo has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.

HTH,
Dusty
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Last edited by DustyKat; 09-28-2010 at 04:22 PM.
09-28-2010, 05:22 PM   #9
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Well said Dusty
09-29-2010, 04:38 AM   #10
Dexky
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Hey D, I'd say Dusty hit the nail on the head!! They told us it takes 6mp six months to fully integrate!! My understanding of Aza is it's the same med. after the body metabolizes it. I guess it's a very tough decision to make for you. A few more years and you'll only be an adviser as all these decisions will be hers to make.

So, the one doc is willing to rx the aza and the other isn't? Or is it completely your decision in either case?
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09-29-2010, 10:50 AM   #11
Dallies
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Hiya Dex, the decision will be the consultants, they are the professionals and any directions from them we follow. If they say this is what medication she needs then that's what she takes. To use your words Dex, "Hell they're the Doctors - what the friggin' hell do I know??' Haha One team of consultants are the gastroenterologists and the other team are the surgical team. We will know more at her next appointment on December 1st. xxx
09-29-2010, 05:04 PM   #12
Astra
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Hiya Dallies

hope you're ok and Meg too?

I have to agree with Dusty and Nicci, a prophylactic, a preventative is always better than a 'cure', and this surgery isn't a cure, the diseased bit has gone, but the Crohn's will always be there. The docs have to monitor Aza and 6MP cos of liver problems, so they'll always be on the ball. If you don't want Aza, even Pentasa will suffice for now, and try the Aza at a later date.
I really hope Meg has a long happy remission, just look at Roo, speaks volumes!
lotsa luv n stuff
xxxxxx
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09-29-2010, 07:23 PM   #13
Crohns08
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This decision is tough, but I wouldn't let the doctors do whatever they want. Doctors aren't perfect and they mess up too. If I or my Dad hadn't done our research I might be in a far worse place and my Dad might not even be here with me. Just my opinion
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09-29-2010, 07:39 PM   #14
Dexky
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Two different doctor's have given us two different opinions on maintenance medications.
Yeah, they are the friggin' doctors but when^^^^^happens, someone has to make the final call!!! Do the docs just hash it out between themselves or do you have an input???? Of course you have an input....she's your daughter!!!
09-29-2010, 09:26 PM   #15
DustyKat
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I would have a tendency to listen to the gastro guys, not the surgeons, but the final decision is yours and Meg's.

Dusty.
09-29-2010, 11:59 PM   #16
Entchen
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Hi Dallies: No input (too new to have an opinion), but I want to send you best wishes as you work toward making a decision!
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09-30-2010, 01:31 AM   #17
Dallies
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Thank you to everyone. It really had helped and we will question the Docs. (Toni -) spot on will definately do more research, (thanks Astra) Pentasa could be an option. I do think she would be better taking something rather than nothing. Prevention is key surely rather than wait and then deal with it?????? (Dusty) as always spot on! The gasto said meds and the surgeons said to stop in a few months. Thanks xxxxxxxxxxx
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