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I'm afraid of the new medication

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Ulcerative Colitis
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Posted 8/22/2015 1:53 PM (GMT 0)
I'm very disappointed that I cannot take Salofalk tablets or enema any longer because of my low BP. My GI said I need to stop taking it altogether. Instead I've been given Entocort which I am supposed to start this morning.

I am very afraid of starting something new but I am still having symptoms (blood/pain/mucus and alternating D & C - but not as bad as it was prior to the Salofalk enema).

I think I need some common sense encouragement. I can't seems to put the pill into my mouth because I'm afraid of the side effects.
Posted 8/22/2015 2:01 PM (GMT 0)
Are you able to take Uceris? Entocort is not really a very good option for most UC'rs compared to Uceris (the same med that dissolves in a better location than Entocort does). It might not be available in countries outside the US, which you must be. Entocort is really no big deal side effect wise compared to several other UC meds. I would worry more about that it just isn't going to work well.
Posted 8/22/2015 2:18 PM (GMT 0)
He mentioned the limitations of medication available because of all the meds I am on for various other illnesses, so that may be why he didn't offer it.

I have a variation of UC (diverticular associated colitis - which has become more severe than most do) It is located in my sigmoid colon.

I'm so new at trying to understand all of this. Are you saying that it might not reach that area?

(I do live outside the US but I think the Uceris is available here)

ETA: I have multiple sensitivities and allergies. Maybe he is concerned about my reaction? I just read that there are fewer side effects from entocort. This is so confusing.

Post Edited (lealee) : 8/22/2015 8:35:13 AM (GMT-6)

Posted 8/22/2015 2:43 PM (GMT 0)
Entocort is a steroid. It is targets certain sections of the small and large intestines (ileum and/or ascending colon). It doesn't reach all of the large intestine, just the higher up portion. For that reason it's usually prescribed for crohns disease.
Posted 8/22/2015 2:45 PM (GMT 0)
@iPoop I don't understand why he would suggest it. Is there ever any confusion having what I do vs crohns disease? O boy. I don't know what to think.
Posted 8/22/2015 2:57 PM (GMT 0)
I'd question the doctor whether it's the right medication for you. Is your uc limited to the rectum, go to the sigmoid colon, or does it effect the entire large intestine? Especially if your uc is in the rectum, entocort is totally missing its target.

Steroids alone aren't the way to treat uc, you need a maintenance medication. Steroids are an emergency rescue medication meant for short time use during a flareup of uc.
Posted 8/22/2015 3:02 PM (GMT 0)
Entocort and Uceris are the exact same med inside with different outside coatings so there shouldn't be an issue with one giving you problems and the other not. The Entocort dissolves farther up while the Uceris dissolves more in the large intestine, which is more conducive to treating UC. Don't give your doctor too much credit. Since you are not in the US he may not have much experience with Uceris so he doesn't even consider it. Sometimes as a patient you need to teach your doctor things he doesn't know and demand certain treatments because you are knowledgeable yourself instead of just following doctor's orders. You should grill him about Uceris.
Posted 8/22/2015 3:53 PM (GMT 0)
He should also have put you on a steroid enema...

I suggest you call him and discuss options and ask to try what would be more appropriate for what you have.

q
Posted 8/22/2015 4:51 PM (GMT 0)
@iPoop - It's in my sigmoid colon

@garylouisville - The problem I have is I am shy to rock the boat with this doctor because he is the leading expert on the topic and teaches it at the University. People have said he's like a realtime "House" but not as rude. lol
He treated me for something quite rare and did so without surgery (Sessile Serrated Adenoma - 6+cm's and 2 or 3 others smaller but equally as difficult to reach). He only takes complex cases - but I will ask him if I can get up the nerve. I just would have to wait until next week because it is now the weekend and he doesn't work. :(

@quincy - He did give me a steroid foam to use if this doesn't work - Cortifoam. But I am only supposed to fill it if the entocort doesn't work.
Posted 8/22/2015 5:26 PM (GMT 0)
I'm sorry you feel so scared to try this med, maybe it's your gut instinct telling you something...you have to be comfortable to talk with your GI, no matter how popular he is, he's just another person just like anyone else, so don't let him make you feel intimidated, some of the very best make plenty of mistakes too.

Tell him your concerns (and what' you've learned here about Entocort) and how you feel just as you've expressed it here, after all, it's your health not his and you have the right to share your concerns and question any GI that is treating you.

If it makes you more comfortable to hold off taking Entocort until you talk to him again then go with your gut and don't let intimidation mess with your head.
Posted 8/22/2015 5:31 PM (GMT 0)
Use the cortifoam now because the entocort wont ttouch the lower colon or rectum.

Why wait to find out?

q
Posted 8/22/2015 5:38 PM (GMT 0)
It does sound odd that you have been given something known for helping upper colon when your disease is low down. Where I am, in the UK, Uceris is known as Cortiment and it was only approved really recently, Feb of this year. He sounds difficult to ask but can you ask why not Cortiment for you?

Try not to be scared.
Posted 8/22/2015 5:49 PM (GMT 0)
Entocort actually works better than Uceris for me for some reason. It'll snap me out of a mild flare, but only pred works for moderate to severe symptoms.

As far as side effects, I had some, but the serious ones went away in about 10 days. I got a lot of headaches and acne at first. By the end of the script, my face had gotten slightly puffy too, but nowhere near the prednisone moonface. All-in-all, I'd say the side effects were way less severe than I've experienced from most other UC drugs.
Posted 8/22/2015 5:58 PM (GMT 0)
@quincy - He told me only take it if the the entercort doesn't work. I don't know if I should wait and call him Monday. I am really upset.

@ London Lurker - I am at a loss to understand why he would prescribe the wrong med. I hear what you're saying and it's very upsetting to think of (not you - the entire thing). He is a highly sought after GI. Most can't get in without a complex issue. ~sighs - this is difficult and I am trying not to be scared - but it is definitely got me very concerned.

@L Rachel - Do you have UC? I am happy to hear it works for you. I have multiple allergies and sensitivities and I am guessing he looked at my medication list (lengthy) and wanted to give me something with fewer issues. My flare has improved and I think I am near the end of one and perhaps that is why we gave Entocort to me. (?)
Posted 8/22/2015 6:02 PM (GMT 0)
I might just think on this one for a couple of days until I can reach him. My symptoms are better, but not gone. It's concerning that I may have been given something that won't work - I just cannot see him doing that…but people make mistakes. Oh boy I thought I was scared with a steroid now I'm afraid it might be the wrong one.
Posted 8/22/2015 6:04 PM (GMT 0)
@L Rachel - sorry for asking what you had - I didn't see your signature! You do have left sided UC.
Posted 8/22/2015 6:05 PM (GMT 0)
@pb4 - I think you're right. I'll wait to speak to him.
Posted 8/22/2015 10:41 PM (GMT 0)
My GI also gave me Endacort for left side uc. It has help me and I have not had any issues. I've heard others say it's the wrong med but I think you should trust you GI. Ask him of course but remember he is the doctor in this situation.
Posted 8/23/2015 12:16 AM (GMT 0)
My GI also prescribed Entocort several years ago for my left-sided UC so maybe there is some reason for doing so (I don't remember Uceris being around then). Nothing bad happened, lots of energy side effect but it didn't remove my UC symptoms either.

I agree you should be using the steroid enema but what other RX are you taking along with these? Neither Entocort or steroid rectals are maintenance meds, they are used with other UC meds to give you the extra bump with other meds to get you into remission (or at least on the way).
Posted 8/23/2015 3:18 AM (GMT 0)
In the US sometimes the issue is insurance. Most all insurances will cover Entocort but they might not cover Uceris until you've tried Entocort first, which is really stupid because they are released in different parts of the colon and one is mainly for Crohns while the other is mainly for UC.
Posted 8/23/2015 11:04 PM (GMT 0)
@Cadillacwomen - That is very good to know, thank you! I had really begun to second guess everything I'd been told. I just want to feel good and I think my doctor wants that as well.

@imagardener2 - At this point I am not taking anything for my symptoms. I can't take the Salofalk anymore.
I have been having some wild pains today so I think I should give the Entorcort a try in the morning. What are "energy" side effects?

@garylouisville - My insurance in Canada covered it - thank goodness. Apparently it would have cost $500.00/month. I couldn't believe it.
Posted 8/24/2015 12:14 AM (GMT 0)
lealee

So you are only being prescribed steroids? I don't think this is a great idea because you can't stay on steroids indefinitely. Yes I understand you can't take mesalamines but what about 6mp or Imuran? When my GI RX'd Entocort I was switched to 6mp (because Asacol/mesalamine wasn't doing anything). Has your doctor talked about what other RX will be added and when?

The side effect of "energy" was from Entocort. It's supposed to be targeted to the colon and not go throughout the body like prednisone but I guess some got out :-) because I had lots of energy. I never had any pain so can't comment on whether Entocort will help you with that.
Posted 8/24/2015 6:44 PM (GMT 0)
@imagardener2 - Yes, just the steroids until October (when I see him next). I will speak to him more when I see him then, or if the Entocort isn't working. I have the script for the foam too, but I was advised not to use it yet. I did try calling him this morning to discuss these concerns but the message says he is on vacation.

It's a little scary that there wasn't a number for an on-call doctor while he is away. I guess that's what the fill in doctor for my GP ( who is on MAT leave) is for. :(
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