I took entocort for two years. terrible side effects. Itching, bruising weight gain,itching arounf mouth. I've been off entocort for two months and NO improvement in the side effects. When can I expect relief?
How long after stopping entocort will the side effects last/?
Question posted by sandy534 on 22 July 2012
Last updated on 25 October 2018
Added 24 July 2012:
I am hoping to connect with another long term entocort user and perhaps swap coping strategies. In my case the drug is a disaster. I know women are vain but to go from a size8 to a size 14 in 18 months would upset most of us The worst of it is that I may have to go on it again but right now I'm trying to repair some of the damage. I itch, I bruise...big ones, looks awful....the weight gain continues despite careful dieting, my legs swell, I have skin tags in my arm pits,,,,,,avoid taking entocort if you possibly can! I have sought advice from my physicians who are so pleased at finally getting a diagnosis that they pat me benevolently one the head and imply that I should be grateful for no longer having to wear diapers. I am....but my arms and legs are bloody from scratching and my ankles hang over my shoes. And let me say here that the medical attention in my community includes a prominent University Hospital and four near by hospitals. If I could speak with someone who has "been there" and can tell me roughly how long until i find that light at the end of the tunnel I'll be very grateful . Sandy 534
4 Answers
annem12-18
17 April 2018
I took Entocort for 1 year (microscopic colitis, suspicion of Crohns). It made me VERY moody, I gained 20 pounds, had itching around the mouth. I am post Entocort 6 months now, feeling better mood wise, but that did take about 2 months to really feel 100% myself.. I found that really intense cardio exercise improved my mood greatly - and stayed that way.
The weight gain was sneaky. It didn't start for 4-5 months, then came on strong. I have lost 12 pounds, 8 more to go. Low carb, low calorie diet with lots of calcium and protein seems to be working. Also try lots of water, and as much cardio as you can manage. My doctor switched me to melamine, which seems to be working, but it did take about 1 month to show improvement. Now I feel great and am starting to fit into my clothes again. Good luck, and remember - reactions to medications are very individual.
lauren_0000
25 Oct 2018
Reopening this thread here-- Hopefully you have some updates
I had a very bad flare in April/May of this year, about 29 days of a fever, hospitalized, and 21lbs weight loss in 3 weeks.
I went on Entocort (9MG/day) (also taking Apriso) for the first time. It took about 10 days for symptom relief and for the first month - no weight gain. The next 2 months I gained back about 10 lbs (which I was happy about, as I could finally eat, and could tell most of my weight loss was not healthy and alot of muscle loss). Month 3 I went down to 6MG without any noticable troubles, month 4 I cut it to 3MG a day. The last month I gained another 10lbs, was having moonface, the itchy rash you explained, a bumpy forehead... (i know this is associated. IT is NOT Acne..but ugly).
The WHOLE TIME on Entocort I experienced Terrible Mood Swings and intense Depression/anxiety that I've never experienced before. I know it was the medicine. I felt like I was on speed or something, and ravenous. I worked out INTENSELY to help with the anxiety, which worked okay.
I have now been off of Entocort for 2 full weeks. I am EXHAUSTED. I was working out 4-5 times a week on Entocort (cardio/weights/etc) and have tried to workout since being off of it but my lungs and muscles get completely exacerbated. I also have not taken off any weight. My mood is 10000x better, no anxiety or depression.
Hoping someone may have had a similar experience..
The fatigue is awful. I want to nap ALL DAY LONG (and easily can, and will still be tired). How long after stopping did you notice that your energy came back? When did you start losing the extra weight?
Pammy50
3 Nov 2012
I have been on entocort on and off for years. To me it is much better than taking prednisone. I do have some moon face and weight gain. When I need entocort, I try to take it every other day and my side effects aren't as bad. Good Luck.
MadMartha
2 Nov 2012
Hi there -- I have been taking Entocort for about 5 years -- and quite a heavy dose -- 6 three mg pills a day. I have tried, over the years, to wean off, and each time I do my colon really acts up. However, I have other health issues (undiagnosed) and the specialists believe the entocort is "influencing" those other issues and making it impossible for them to diagnose me. So I am going to try AGAIN -- to get off. I am sorry that I don't have a direct answer for you but I wanted to reach out to you as another long term entocort user. I am going to wean off more slowly this time.
I never ever really thought entocort had much in side effects other than the weight gain. However, as I have researched it more lately, and found that many side effects reported by other people are similar to "issues" that have developed for me in the last few years. For example, the itching is a big one. As well, my vision deteriorated significantly when I started taking it. My face is round and I feel big all over -- I tried on a pair of boots yesterday and even though they were slightly bigger than my normal size, I could not zip them up past my ankles (and they were a generous fit). I have also had numbness in my lips and nose -- off and on, a frequest runny nose, and extremely sore legs, feet and hips.
One welcome side effect I had was that a loonie sized bald spot that I have had on my head for 40+ years suddenly grew hair!! That was a welcome side effect. Totally unexplainable!!
Generally I have felt that it has been a successful drug to combat my colitis. However, the long term effects of being overweight really concern me. I exercise a lot and you wouldn't believe how much I weigh. As I think every person is different in how drugs are absorbed and how quickly (or not) they leave your body -- I truly don't believe that there is one answer that would help you anyways. It depends on your dose, how you weaned off them (or not) and your weight. Think back to how long it took for the symptoms to appear. Maybe that will help you.
Also, I developed hypothyroidism after about 3 years on entocort. I can't help but wonder if that is independent of the entocort or induced by it.
I hope I have helped you just a little. Take care and good luck with everything.
MadMartha
17 May 2013
Hi -- this is MadMartha again -- This time I have successfully weaned off of entocort -- down to 1 per day. I did it really really slowly. Like painfully slowly -- so that I wouldn't have the same overactive colon issues that I have had in the past when I weaned off. I have lost about 35 pounds. I am back to size 6 and 8's when there were times when a 12 wouldn't fit me! I didn't do anything different than I have been doing the last 5 years to lose the weight. It just fell off me. I feel much healthier now not being so overweight. My moon face is also gone. It took me to get down to about 3 or 2 per day until the changes started happening -- and that happened over about a 9 month or 10 month period. I ended up developing high blood pressure when I was so overweight. I am still on meds for that but with my weight loss my blood pressure has been much better.
I can't emphasize enough about how much I exercised (while I was on entocort) and how it just didn't matter. I still gained weight. My advice is to get off of entocort if you can, but do it very gradually so that you won't face annoying side effects while you are doing it.
sandy534
18 May 2013
Oh, Martha! I am so glad for you . Only some one who has "been there" knows the absolute misery of the inexorable weight gain... and some of the other side effects too. As for me, I have been totally off entocort for a year. And I wear a size 14 now. Three years. ago I wore an 8. Exercise? I can see my treadamill from where I am sitting and I USE it. The itching remains. It's unsightly (I scratch) and miserable. But I don't have diarrhea any more. Well, not very oftern anyway, and I'm grateful for that. I could write a book on the art of changing an adult diaper in a public ladies room. So I guess I should be grateful. And you got your hair back. So I guess we are better with having entocort than without... I went for five years incontinent before someone invented it. On the other hand... one thing. The side effects are vicious and there is little support or recognition of them from doctors.
They seem to feel that the side effects are negliable and that one should be grateful for the enotcort. I am, but I hate being told when I itch that it is insignificant and that I am bothering them (all) with my hope of finding a way to palliate them.
It is good to know that each of us has found "life without Entocort"... it may not be what we had hoped for but it's beats "life before" and... anyway... do we have a choice? I'm so glad to hear from you. Sandy 534
TexasLiz1
30 July 2015
I know this thread has been complete for a few years, but...
Been on Entocort 9mg/day for several months, and weight is packing on (20lbs since April). I was able to discontinue the drug about a month ago, but hair is falling out like crazy, and I'm still packing on the pounds, despite major exercise. Legs have such horrible swelling I look like I'm developing cankles. Please someone tell me this nightmare will be over soon!
suzanne66
23 July 2012
Given that you were taking Entocort for two years it may take some time for the side effects to lessen - but your symptoms should lessen with time. There is a risk that some side effects of steroids may never go away (glaucoma, osteoporosis, cataracts).
Give it a little while longer and if you are at all concerned talk to your doctor. All the best.
Related topics
entocort, weight loss (obesity/overweight), pruritus, side effect, weight, lymphocytic colitis, bruising, mouth
Further information
- Entocort uses and safety info
- Entocort prescribing info & package insert (for Health Professionals)
- Side effects of Entocort (detailed)
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