Meds stopped working - new to the forum - advice request

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Thomas333
New Member


Date Joined Nov 2017
Total Posts : 5
   Posted 11/9/2017 7:32 PM (GMT -7)   
Hi all,

I'm new to the forum and to UC as I was diagnosed in August this year. Actually, I think I've had UC for a couple of years now but this year it was quite severe (rectal bleeding) so I wen to doc and after colonoscopy I got diagnosed with mild UC. Strange thing is that while I was waiting for diagnosis my symptoms resolved, I felt better and had no rectal bleeding...Now, after the results came back, the doc gave me meds (Etiasa - mesalazine) 1 gram per day for 3 months. I have taken the meds but as of last week the symptoms came back...;/

Don't know what to do know now, Should continue taking meds or stop them altogether (as they seem not be working) and try a different drug? Should I increase the dose (1gr per day seems awfully low, that's what I read on forums)? Don't really know what to do now...;/ Any help will be appreciatedsmile

Thank you!
Tom

irish4me
Regular Member


Date Joined Nov 2011
Total Posts : 128
   Posted 11/9/2017 7:50 PM (GMT -7)   
Need to let your Gi know symptoms have come back. UC requires maintenance meds. Sounds like yours might need some tweaking from your doc.
Flared Sept 2017 - pancolitis
Prednisone - 15mg...tapering (started at 40)
4-Lialda
Rowasa - nightly
Imuran 75mg (restarted after nearly 2 years off of it) previously on Imuran 12/2011-11/2015
Humira (Ins denied Entyvio)
Multi-vitamin, Calcium, Vit. D

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15235
   Posted 11/9/2017 8:15 PM (GMT -7)   
I would go back to the GI and ask them how to proceed. You can definitely increase the dose, but ultimately you need a new script in order to have enough to make it through the month, so I'd make an appointment and see what they say. Sorry you're dealing with UC.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 11/10/2017 7:14 AM (GMT -7)   
Before I seeked my official UC diagnosis, my symptoms appeared for a while, disappeared on their own, and then came back again. So, yes, it can happen in milder cases.

Continue taking your medications as prescribed, as they are still doing something (just not enough). If you stop your med then you will likely get worse.

Contact your gasteroenteroligist asap and tell him/her about your worsened symptoms. Ask about a higher dosage, as 1 gram per day is very low dosage (4,800 mgs is more typical). You are not on any rectal medications, so you might want to ask about Canasa suppositories and/or Rowasa enema. Those have the same active anti-inflammatory ingredient, mesalamine, as your Etiasa oral pills do.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/10/2017 11:39 AM (GMT -7)   
Welcome to the forum!

Do you have a copy of your original pathology....what is the extent location of UC?

From what I read, your med is oral granules. 1000mg daily isnt enough, but you aren't on rectal meds....so you are way undertreated. Your title of the meds stopped working is a misunderstanding of treatment.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Thomas333
New Member


Date Joined Nov 2017
Total Posts : 5
   Posted 11/10/2017 7:15 PM (GMT -7)   
Hi all,

Thanks for a quick response. I just called my doctor and made an appointment;)

Cheers,
Tom

Thomas333
New Member


Date Joined Nov 2017
Total Posts : 5
   Posted 11/10/2017 7:40 PM (GMT -7)   
quincy said...
Welcome to the forum!

Do you have a copy of your original pathology....what is the extent location of UC?

From what I read, your med is oral granules. 1000mg daily isnt enough, but you aren't on rectal meds....so you are way undertreated. Your title of the meds stopped working is a misunderstanding of treatment.

q


Hi there,

My initial diagnosis was I quote "Colitis chronica maioris gradus" in Cecum (-3 - 0.3cm), Transverse colon (-4-0.3cm) and sigmoid colon (-3 - 0.3cm). Whatever that means... It was done in Poland, and the doctor said it was mild (I checked on the internet and couldn't make heads nor tails of it but, of course, I'm not a doctor). The Polish doc said I should take 1gr Etiasa at least 3 months. But I'm in China now and am treated by a Taiwanese doc, he confirmed that it was mild (again don't understand it as 'colitis maioris...' stands for severe inflamation, I believe) and he said 1 gr is ok maybe even less than 3 months...Don't know what this is all about because, I checked on the internet and UC is a lifetime disease which comes and goes...and on the Etiasa leaflet it says that the initial does is 4x the one I'm taking! But again, I'm not a doc so I used their suggestions...

I'll go to see my doctor next week and tell him about the symptoms (which are BTW subsiding as I'm writing this post, meaning no cramps or urgency just a little blood on stool). Ehh, I hate illnesses (in general of course too) which vary so much in symptoms...;/

Thanks again,
Tom

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/11/2017 9:19 AM (GMT -7)   
I have no idea about the location description....lol...but no mention of the rectum?

Let us know how your appointment next week goes. Please bring your report and ask the specialist for clarification 😁

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 620
   Posted 11/11/2017 9:58 AM (GMT -7)   
quincy said...
I have no idea about the location description....lol...but no mention of the rectum?

Let us know how your appointment next week goes. Please bring your report and ask the specialist for clarification 😁

q



The cecum is the part of the large intestine closest to the small intestine, so the furthest away from the anus. I know because I had a big old polyp there a few years ago.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/11/2017 8:12 PM (GMT -7)   
??? You misunderstand my statement.
Cecum (-3 - 0.3cm), Transverse colon (-4-0.3cm) and sigmoid colon (-3 - 0.3cm).  Do you know what fhe number measurements mean?
I know where the cecum is....🙄

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7997
   Posted 11/12/2017 7:24 AM (GMT -7)   
ya, but do you know where the Jurzi girl is ;-)
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/12/2017 10:44 AM (GMT -7)   
Most of the time...lol.
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Thomas333
New Member


Date Joined Nov 2017
Total Posts : 5
   Posted 11/13/2017 5:46 PM (GMT -7)   
Hi all,

I saw my doc today and he said that my UC was mainly connected with transverse colon and rectum. He gave me prednisone 0.5 grams twice per day for 7 days and upped the dose of Etiasa to 4 grams a day also he gave me some pills to stop bleeding. What do you think about the dosage and the meds? Isn't it too soon for a steroid medication? I heard so many bad things about the steroid drugs that I'm worried:/

Thanks
Tom

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 11/14/2017 6:18 AM (GMT -7)   
Glad they increased the Etiasa dose to 4 grams a day.

A typical dosage of prednsione is 20-40mgs per day for us. Are you sure about 500mgs twice a day (0.5grams) as that does not sound right. Just make sure they have given you the right dosage, as they've mixed up mine before and prescribed too much. I generally did not experience pred side effects until a couple weeks in, a 7-day course is much shorter. Pred sucks, but it is rocketship fast in getting rid of our worst symptoms (it's a love/hate thing for us with pred).
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

I believe that my anus is a portal from Hades as only evil comes out of it.

Thomas333
New Member


Date Joined Nov 2017
Total Posts : 5
   Posted 11/14/2017 7:04 AM (GMT -7)   
iPoop said...
Glad they increased the Etiasa dose to 4 grams a day.

A typical dosage of prednsione is 20-40mgs per day for us. Are you sure about 500mgs twice a day (0.5grams) as that does not sound right. Just make sure they have given you the right dosage, as they've mixed up mine before and prescribed too much. I generally did not experience pred side effects until a couple weeks in, a 7-day course is much shorter. Pred sucks, but it is rocketship fast in getting rid of our worst symptoms (it's a love/hate thing for us with pred).


Hi there,

My bad...I got 15mg of prednisone....for 7 days...(my wife just translated the Chinese characters for me;p and it turns out I was looking at the other drug;p). I guess it's lower than usual then, I just hope it will work...

Thanks for all help!
Tom
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