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06-01-2011, 05:29 PM   #1
JudithC
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Pentasa

I'm weaning of 30 mg of Pred, and now my Pentasa has arrived. Dr. told me to take it as soon as it gets here. BUT, it is 500 mg and says take 2 capsules four times a day. I will def call Dr. tomorrow, because this seems like a lot. I think that is all he wants me to take once I wean off the Pred in another 7 weeks or so. I have the Entocort but he said to keep that as a back up. I am soooo confused.
06-01-2011, 08:14 PM   #2
davidr
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You typically do have to take a lot of Pentasa. When I was put on it, they started me out with three 250mg capsules four times a day.
06-01-2011, 09:08 PM   #3
Grey Hawk
 
Join Date: Dec 2010
Location: Cleveland, Ohio
I use to take 6 500mgs a day for 4 years. My new doctor thinks Pentasa is useless though, so I stopped it for 6 months and had no change. So maybe it works for some people, but did nothing for me.
06-01-2011, 09:24 PM   #4
meaculpa
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i'm on 8 pentasa tablets a day and weaning off prednisone. it works differently to the predisone and i.ve been advised to use both together (and 6MP!).
my brother though weans off predinisone and then starts pentasa (again 8 tablets a day)....
06-01-2011, 09:36 PM   #5
JudithC
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Thank you all......I appreciate your sharing information with your dosages. I've never taken many meds before this, so it seems like a lot to me. I may have to buy myself one of those chiming wrist watches to remind me to take my meds. LOL

"mea culpa"? Gosh I haven't heard that since the last Latin Mass I went to. Dang I automatically starting beating on my chest.
06-01-2011, 09:56 PM   #6
kristen
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I am takin 8 pentasa a day also soon I will be on remicade
06-01-2011, 10:17 PM   #7
mom2twogr8tkids
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It is alot but it's normal. When I was taking it I took 4 pills 4x a day.
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Prayer isn't a "spare tire" that you use when you have a flat; it's a "steering wheel" that directs us in the right path throughout life!

Amanda

Diagnosed 1999

Current Meds:

Imuran
Questran packet
B12 inj
Bupap prn
Multivitamin
Pacemaker


Previous Meds:
Ileostomy reversal
Bowel obstruction & resection
Apriso 0.375 4 once a day
Prednisone
Flagyl
Cipro
Asacol
Pentasa
06-02-2011, 08:02 AM   #8
Swirl
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Yeah people usually take up to 2,000mg or 4,000mg a day with Pentasa. Thats about 500mg or 1,000mg 4times a day. So far I'm off it now and on Asacol 3 pills a day, 3 times a day and i think each capsule is 400mg. This one looks like it helps with everything but pain. I try coming off it and back to Pentasa which control my pain but had diarrhea. Now I'm back on Asacol and everything seems fine. I think i remember reading Pentasa will take weeks or a few months before it can really work. Those pills are GIANT aren't they?! LOL
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Its not so bad
06-02-2011, 10:07 AM   #9
zye
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When I was in the hospital after being diagnosed I was taking 4 of them 3 times a day, then they cut me down to 2 3x a day as soon as I was discharged. 4 3x a day - I think that was 6000mg, and my UC isn't that bad I was only admitted because I was dangerously underweight.

Pentasa also leaves granules in your stool, first time I saw them I thought I laying some sort of eggs. Lol.

Those pills are GIANT aren't they?!
Strangely, I don't have trouble swallowing them. But I do get nasty heartburn if I lay down too soon after taking them or they just don't go down right.
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Diagnosed with UC - April 2011.
Unexplained elevated pancreatic enzymes (Clean ultrasound) and Gastritis. 2 weeks of Flaygl killed C diff.
Pentasa 1g/x3 | Prevacid 1 a day | Prednisone 5mg
06-02-2011, 10:12 AM   #10
vickie_x
 
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Yeah, I'm on Pentasa too - 4 tablets 2x a day which is 4000mg in total. It does seem like loads but like everyone here has said, it's normal x
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18 year old Biomedical Science student.
Diagnosed with: Aspergers Syndrome - Feb 2010; Hiatus Hernia - Feb 2011; Crohn's Disease - March 2011


Currently taking: Mercaptopurine 25mg (four times a week), Pentasa 4000mg, Omeprazole 20mg
Previously taken: Mesren MR, Sertraline, Folic Acid, Multivitamin, Azathioprine, Lactulose, Prednisolone, AdCal-D3, Ferrous Sulphate


06-03-2011, 03:44 AM   #11
lorrainehodges
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Join Date: Feb 2011
I too take 4 x 500 MG twice as day. They seem to really help me and most of the time keep the symptoms at bay. The only thing I have a real problem with is tiredness.
If anyone has found the same problems then i strongly recommend Siberian Ginseng... its the dogs!!
06-03-2011, 05:32 AM   #12
lulu2
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I take 6g a day of pentasa normally.... 2x 2g sachets in the morning and 1 2g sachet in the evening... but during a flare my GI told me I can take 8g a day (so 2 in the evening) and that's what Im currently doing as Im flaring (although it seems to be slowing and stopping now after a short course of prednisolone).

I like pentasa, I found when I was first put on it lessened my symptoms a LOT, I have having fewer 'episodes', each on was shorter and much less severe. Things have been pretty good until the latest flare tbh which has been the worst to date... but i started on pentasa in sept and aside from some minor symptoms Ive been good until now!! Im hoping to stay on pentasa for now with nothing else and that once this flare clears I'm ok for a long time again.

Hope you're feeling well!

xxxx
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Currently LOVING my job!!
Currently NOT loving my crohns!!

26 yrs old.
Currently taking: prednisolone 30mg/day, Azathioprine 25mg/day then 50mg in 2 weeks (well actually I've temporarily wimped out of this) 8g pentasa a day, folic acid and various cardiac meds.

Any advice I give must never ever ever replace the advice from your own doctor and care givers. They know far better than I do!
06-08-2011, 03:38 PM   #13
Boioiod
 
Join Date: Apr 2011
Location: Fairfax, Virginia
And me to the contrary, am weaning off 30mg of Pred, and am wasting my money for the last time on Pentasa on my current scrip. Unless I'm eating 6 Pred a day, I get no benefit from any of these pills. Diet and tons of probiotics have had the greatest change for me.
06-09-2011, 09:30 PM   #14
soretum
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i've just been diganosed this week and have been strted on 4x500mg pentasa twice a day and 40mg prednisone tape3ring by 5mg a week....seems to be the standard! I know what you mean about taking lots of pills, gone from taking a paracetamol here and there if i have to to taking 16 tablets a day, eek!
06-13-2011, 02:51 PM   #15
Cordillia16
 
Join Date: Nov 2010
Location: Abbotsford, British Columbia
I"m currently on 6x500mg a day of Pentasa and I've never found it helpful at all. Has anyone else found it helped?
06-13-2011, 05:36 PM   #16
davidr
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Join Date: May 2011
Location: Washington
Pentasa never did anything for me either. I asked my doctor about it after I had been taking it for a year, and he said it doesn't do anything for a lot of Crohn's patients, but it is cheap(er) and has few(er) side effects, so government guidelines* call for it to be prescribed first to see if the more potent medicines can be avoided. Now I'm *just* taking Remicade and azathioprine.

*Note that this is based on my experience in Japan, and not necessarily the case in other countries.

**Edited to add: He also said that they don't take people off of it unless they ask or have a bad reaction.

Last edited by davidr; 06-14-2011 at 02:22 AM.
06-16-2011, 08:09 AM   #17
Fuzzy_griffon_cheeks
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That's a pretty normal dosage for Pentasa and it's because your body only uses about half of whatever amount of the drug is put into it (no wonder docs think it's useless). I was taking 4,000 mgs a day (8 pills in a day) for a while but my body didn't like it so much so I stopped taking it. For me it didn't work. Just be sure and pay attention to the white pellets in your stools, you need to see them er, rather, want to see them. Apparently it's bad if you don't. >,O

But it can be taken with the Prednisone and Entocort. Hope it works for you, really I do. @};-'-----
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"I may carry a cross that would seem unfair to many, but with God's grace I accept it; for I am burdened so as to teach and encourage others through my suffering. That is my lot." ~E.R. Stevenson

Give thanks to be joyful always; for what good does it do to dwell on our misfortunes? Life's disappointments are an opportunity to grow in character, and if indulged, could mean the difference between an irreparably bad day and a peaceful heart. Don't give up, there's always hope!
06-16-2011, 08:13 AM   #18
JudithC
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Thank you....I did see little pellets in my stools, glad to know that is normal/good. I am weaning off Pred, down to 20mg now, and feeling a bit worse each day. I am taking the 4,000 a day of Pentasa too. Dr. states that there are NO side effects to Pentasa.
06-16-2011, 08:49 AM   #19
ronel
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Join Date: Apr 2011
When I was on Pentasa I starte off on 2 500gr tablets twice a day and ended with 3 twice a day. Currently on Humira.
06-16-2011, 08:55 AM   #20
partlycloudy
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One thing about Pentasa, it's really entertaining to show those giant electric blue pills to other people and watch their reaction when you tell them how many you take, lol.
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Crohn's of ileum dx'd 2008.
Imuran, 150 mg
06-16-2011, 01:50 PM   #21
M2M
 
Join Date: Apr 2011

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JudithC
please don't let ANY doctor tell you there are NO side effects with a drug... yes there is.
My daughter was on Pentasa for just around 2 weeks; enough for it to get in her system and build up; and she ended up in the ER with a pancreatic attack. The two docs were like what is she on.. and Pentasa was one of the things; immediately taken off of that; 4 days in hospital; pacreatic issue went away. Now currently weaning off her Entocort.. but no more Pentasa NOR any 6MP
so please pay attention to your body and make sure you get to know your body signs well! take care
06-17-2011, 05:37 AM   #22
Fuzzy_griffon_cheeks
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Thank you....I did see little pellets in my stools, glad to know that is normal/good. I am weaning off Pred, down to 20mg now, and feeling a bit worse each day. I am taking the 4,000 a day of Pentasa too. Dr. states that there are NO side effects to Pentasa.
Oh good!

I wasn't so lucky while on it (still on it in a matter of speaking ) to see anything come out in my stools--I didn't even know there was supposed to be anything like that occur. Instead, my body flat out attacked the drug because it's synthetic and come to find out my body doesn't do synthetic (my body hates Humira too with a passion; guess what? It's synthetic). -__-

That stupid Pentasa, a year and a half later, is still in my gut--the 15 feet worth of intestine where neither scope can reach?-therefore it's not there so the doctor says yet it's in my vomit?--and has caused all most every single mild to severe to rare side effect listed to that drug. So in no way does Pentasa NOT have side effects. I know by the massive swelling (allergic reaction) and itching, the chronic rash, the [for a while] dark urine, the jaundice (yellowing) skin, the hair loss--and I used to have gorgeous thick hair --the VIOLENT stomach pain/nausea and vomiting (yep, been vomiting a year now), the easy bruising, the nose bleeds, the numbness, tingling and severe weakness in my arms and legs and over all worsening of my condition, that Pentasa has side effects. -____-

I too am on Prednisone and have been so since February though I'm tapering off. I was up at 60 mgs for like 4 days. Then while coming down, and because the Pentasa has been in there so long and my body's bound and determined to fight it, I've begun to swell larger and larger and itch more and more the further I ween off the Prednisone as the Prednisone is actually keeping the Pentasa side effects at bay--keeping down inflammation is kinda what its good at. XD Unfortunately as I continue to swell, my throat has become one of them just as of yesterday morning when going to bed. If it increases which it will when I further the taper, the swelling will choke me, so that new GI doc I was referred to that was supposed to call me, had better call today sometime and if not, they're gonna get a call from me on Monday.

And...as a side thought, if you're weening off the Prednisone and feeling worse while one another treatment, in this case Pentasa, I would imagine it's either the Pentasa isn't strong enough for you, or it's actually the cause of you feeling worse. It may very well be one or the other being it sounds like the Prednisone is/was helping you. ~sigh~
06-17-2011, 05:47 AM   #23
JudithC
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Thank you fuzzy...yes, it did concern me that I am feeling worse, not better. At this point discomfort is almost always there, which is why I had asked in another forum, Gee, how long does a flare last? I don't have a scheduled appt with GI until August, I don't think I will last that long but we'll see. I also have a stricture and that worries me, but so far I'm pooping ok, and although I have some nausea I'm not up chucking. There is no support group in my area at all, so this is where I get my info/advice. I take it all with a grain of salt and think things through though. thank you so much for responding.
06-22-2011, 04:20 AM   #24
laureny
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I took 4 500mg tablets twice a day. I stopped taking all my medication because it didn't make a difference but I still always tried to carry on (I was a bit rubbish at taking them when I should) taking the pentasa as it stopped blood in my stools that was coming from the area so I figured it must do something. Steroids was the only thing that made me really notice a difference but as soon as I came off them I went back to my 'normal'. Ive just had the operation to take out a section of my intestines so hopefully Im now healed...and I'm also hoping I'm one of those people where it doesn't ever come back! Lol!
06-22-2011, 07:11 PM   #25
Dan
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I think I used to be on this along with the steroid treatment of Prednisolone when I first had my operation, though the treatment was changed to what I have now due to it not having any effect at all.
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07-03-2011, 03:04 AM   #26
SparrowsFart
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I am taking Pentasa 2 x 500mg tabs 3 times daily. Doc insists its every 8 hours on the dot so I miss alot of doses. Im tired of the lack of info from the medical people.
07-03-2011, 04:53 AM   #27
Rebecca85
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Every eight hours on the dot? In my opinion it would be better to take it at a time to suit you, rather than missing doses. My GI also isn't fussed whether I take mine divided into 2 or 3 doses. So my instructions are to take 4 tablets twice a day, I shouldn't think it would matter much if you take your two tablet doses a bit closer together, it won't make you overdose. If I were you, I would speak to your pharmacist and tell them the trouble you're having, they will tell you if it's OK to bend your doctor's rules a bit!
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Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
07-03-2011, 05:05 AM   #28
DustyKat
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Tell the doc to wake up and smell the coffee. It is far better that you get your recommended dose each day in a reasonable time frame than be hit and miss because you can't meet the requirements of every 8 hours.

I can guarantee you now that I have never woken someone up in the middle of the night to give them a tablet that is three times a day.

I don't know if Pentasa has particular requirements but I would take it when I wake in the morning, when I go to bed at night and at a time somewhere between the two, like mid afternoon.

Dusty. xxx
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07-03-2011, 05:13 AM   #29
Grumbletum
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Yep, Dusty. I've been told to take mine in three doses and that's when I take them.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
07-03-2011, 11:56 PM   #30
SparrowsFart
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Thanks everyone for your positive support.
I guess we all get to a stage where we throw our toys out of the cot - so to speak.
I will adapt the doses to suit me better and just use common sense.
I will talk to the pharmacist this week.
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