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More meds during flare only, or always?

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Posted 3/14/2018 11:53 PM (GMT 0)
Do those of you who medicate for UC or Proctitis use stronger meds during flare-ups only, or while in remission, too? As in, do you increase what you take to resolve the flare and then go back to anti-inflammatories only, or do you take mesalamine long-term as well? My GI believes that I should only take Apriso long-term and Canasa for flare-ups only (as in he will only write me a 30-day script).
Posted 3/15/2018 1:01 AM (GMT 0)
for clarification = canasa is mesalamine and both are anti-inflammatories - it's just delivered right to the sweet spot as opposed to oral that has to travel a bit to arrive at it's destination -

mesalamine is the mildest UC med available -

i would give your doc a 30 day script - as in if he doesn't wise up in 30 days you will be looking for a more knowledgeable physician -

casnasa is a maintenance med & can be used long term -
Posted 3/15/2018 2:33 AM (GMT 0)
What turd says is true. Both are the same drug, but no, I used canasa regularly. I had a script that allowed me to use it either once or twice a day. I also had scripts for all sorts of enemas, which I would use as needed. I guess I was never very stable because I was always using a variety of meds and had problems regularly. It's good to get to a low maintenance dose, but it's better to stay in remission. There's a balance you will figure out, but don't let your condition deteriorate. If canasa daily helps, use it daily. smile
Posted 3/15/2018 3:36 AM (GMT 0)
and if the daily canasa is not getting it done, then yes, adding mesalamine enemas would be the next treatment used, preferably at nite and switching the canasa to the morning -

good luck -

TT
Posted 3/15/2018 4:00 AM (GMT 0)
Increase during a flare....once all is good, tapering starts to maintenance.

Enemas at night, or enemas at night & supps during the day for treatment.

q
Posted 3/15/2018 11:11 AM (GMT 0)
Thank you so much, everyone! I am new to all of this, and it's very stressful. I appreciate this forum so much!
Posted 3/15/2018 12:55 PM (GMT 0)

KC5242014 said...
Do those of you who medicate for UC or Proctitis use stronger meds during flare-ups only, or while in remission, too? As in, do you increase what you take to resolve the flare and then go back to anti-inflammatories only, or do you take mesalamine long-term as well? My GI believes that I should only take Apriso long-term and Canasa for flare-ups only (as in he will only write me a 30-day script).

I take more meds if I'm flaring. When I'm not, I just take my maintenance medication
Posted 3/15/2018 12:57 PM (GMT 0)
"More meds during flare only, or always?"

The general idea is that it takes more medications to achieve a remission than to sustain a remission. So flares = more meds temporarily. Remission equals less meds than flares.

A flare doesn't necessarily = disease progression in extent or severity. It's only when our UC progresses in extent and severity that we need more medications on an ongoing basis.

When we flare, we don't know if our uc has progressed and become worse. Often it doesn't but it can.
Posted 3/15/2018 6:02 PM (GMT 0)
We can tell by symptoms.....or at least, we hopefully should. Some Ucer's symptoms don't match the visuals, and can be frustrating for them and their GIs.

the other issue is tolerance of symptoms and ignoring (wishing them away)......experience to understand that they mean is the teacher.

q
Posted 3/16/2018 3:35 AM (GMT 0)
Hi KC
I want to know how you feed you infant while taking mesalamine, breastfeeding or formula feeding?
I 'm confused about how to feed my newborn baby?
Can you give me some suggestions?
Posted 3/16/2018 2:19 PM (GMT 0)
Hi Tomorrow,
I have had to use formula with her from day one; breastfeeding on such strong medications is not an option, as they can be passed on through the milk. She has responded very well to Enfamil AR. She is 11 months old, and in the 98% for height and 80% for weight! I also formula-fed my first daughter, who drank Enfamil Nutramigen. I had to formula feed her because six weeks after birth, she had blood in her stools (like mom!), and that nipped it in the bud. Better to be safe than sorry! Both girls are healthy and doing great.
Posted 3/17/2018 1:15 AM (GMT 0)
I increase my mesalamine meds when my symptoms increase. Normally when I am in remission, I do a mesalamine enema at bed time, a canasa (mesalamine) suppository in the morning, and 9 salofak (mesalamine) tabs throughout the day. When I flare I do two enemas (one bedtime and one in the morning after clearing things out) and 12 tabs of salofalk throughout the day.

I have beaten back quite a few flares by increasing my meds quickly when symptoms start to increase sharply over more than a few days. If the mesalamine isn't enough, I do a course of pred.

So the answer is yes, I taper to a lower level when in remission. If you don't, you really have no ammunition against a flare if one starts up.
Posted 3/17/2018 2:11 AM (GMT 0)

C_G_K said...
I increase my mesalamine meds when my symptoms increase. Normally when I am in remission, I do a mesalamine enema at bed time, a canasa (mesalamine) suppository in the morning, and 9 salofak (mesalamine) tabs throughout the day. When I flare I do two enemas (one bedtime and one in the morning after clearing things out) and 12 tabs of salofalk throughout the day.

I have beaten back quite a few flares by increasing my meds quickly when symptoms start to increase sharply over more than a few days. If the mesalamine isn't enough, I do a course of pred.

So the answer is yes, I taper to a lower level when in remission. If you don't, you really have no ammunition against a flare if one starts up.


ya, but maybe if you didn't decrease those meds, you wouldn't flare again -
Posted 3/17/2018 4:04 AM (GMT 0)

TroubledTurds said...

ya, but maybe if you didn't decrease those meds, you wouldn't flare again -

Well, unfortunately I've had UC for 15 years, so I've had time to figure out what works. For me personally I've actually been in remission longer this last time (3 years) after going down to a lower maintenance dose than previous times when I stayed at the max dosage. Also, I only take mesalamine for maintenance. I don't think you can reduce biologics or imuran if that's what you use for maintenance.

What is guaranteed to cause a flair for me is either switching to a different oral mesalamine formulation, or taking antibiotics.

Tricky disease this is. Never one size fits all answers to questions.

As to the OP, I think it is a mistake to go completely off rectals (the canasa) when you are trying to stay in remission. Rectals have always been super important for me to stay in remission. UC flares start at the rectum and move upwards.

Post Edited (C_G_K) : 3/16/2018 10:11:38 PM (GMT-6)

Posted 3/17/2018 6:51 PM (GMT 0)
TT....one doesn't remain on increased treatment mesalamine.
And remission is not forever....maintenance and monitoring and treating at earliest symptoms is the key for those of us who want to use the both end first tier treatment.

But you already know that...... I suspect 🤔

q
Posted 3/17/2018 7:22 PM (GMT 0)
you should know by now not to suspect me of anything - unless you are expecting no-good smilewinkgrin

butt ...................... what if your maintenance dose IS the increased amount - if flares continue to arrive at a lower dose, isn't it a reasonable assumption that the maintenance dose is not enuff to do the job and it's time to increase ?

your happy butt dose may in fact not be mine ? no rules, right ? oh wait, the butt rules turn
Posted 3/17/2018 8:16 PM (GMT 0)
TT....Trial and error....not black and white, absitively the grey area.
Experience is the teacher and yes...the butt rules! My maintenance seems to work, so I encourage others to try it as well, alas, no two butts are the same.

Yes..ass-uming, and since you suggest butt meds (yes, I've witnessed it) , I ass-ume you support the treatment increase, combo and tapering process.?!
As well, just an FYeye, I started 29 years ago at low dosage and increased, not bass-ackwards.
q
Posted 3/17/2018 8:55 PM (GMT 0)
of course i suggest and even encourage them- i love butt meds i suspect as much as you -

and of course of course increasing to eradicate flair and then reduction makes sense, unless of course it becomes a more than occasional occurrence - then the decision is whether to increase maintenance or continue as previously mentioned - guess personal choice dictates to some degree but it also raises the question of inflammation level on a semi-continuous basis -
Posted 3/18/2018 5:05 AM (GMT 0)
Happy to hear you partake....
Depends on expectations, and I flare with flair sometimes.
It's not a failure to flare while on maintenance meds.

I have increased maintenance to twice a week from once a week since fruitgirl presented that info quite a while ago, and it's been a good thing. There's a process tapering....and that's a grey area regarding the juggling tto the next step down.

My c-scope in October showed all is good....really good....All unremarkable! So, seems its a good thing? Yes? No?

q
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