Entocort and flaring

Lesley · Post by **Lesley** » Wed Dec 21, 2011 11:35 am

Oh Harma! I understand that so well!

brandy · Post by **brandy** » Wed Dec 21, 2011 3:29 pm

Hi Harma,

I'm kind of impressed that you are taking 1/3rd out. This will give me some options down the road. I'm on a long, slow, gentle taper off and for the last several weeks have been taking 1 pill every 4 days. I want to gradually go to one pill every 7 days and then try to stop taking it but the "taking 1/3rd out" will give me some options if need be down the road. It is definitely a miracle drug but even taking 3 mg I get some "dizziness" kicking in.

Have a great holiday! Brandy

mzh · Post by **mzh** » Tue Dec 27, 2011 8:51 am

Lesley wrote:You are very lucky Suzanne. I hope you manage to stay off it for a long time. Do you know what sets you off.

I battle with constant C, so D is not the problem. I am taking entocort to try to get control the inflammation. I was going to cut down, but this flare prevented me.
When I have C I don't know if I am flaring or not. I haven't felt WELL for so long I have forgotten what it feels like. But when I eat something really bad I have an attack like the one I am having now. The good thing is finally moving the C out, but I feel so horrible.

Have you been checked for an obstruction or a motility problem? I don't have an obstruction but I do have dismotility. In the upper esophagus, food moves too slowly. Once it gets to my gut it moves way too fast. Maybe our guts need pacemakers!

mzh · Post by **mzh** » Tue Dec 27, 2011 9:05 am

Harma, in the past I did quite well on one Entocort capsule every 2-3 days. When I experimented with every 3-4 days the symptoms tended to come back. Rather than splitting capsule contents you might try it this way, unless you've already done that.

PS I know of some dogs who take it as budesonide and the owners have the medication compounded into 2 mg doses. But then it might not be enteric coated.

My GI doc's PA wants me to get off Entocort - and so do I but I don't think it's gonna happen. I'm 99% sure she's gonna want to try me (again) on an ASA-5. No way. It makes my D much worse although I know it works for people not allergic to salicylates like I am.

Lesley · Post by **Lesley** » Tue Dec 27, 2011 3:18 pm

Have you been checked for an obstruction or a motility problem?

I have gastroparesis and a very spastic bowel. There is definitely a motility problem, which is NOT helped by my being on Norco for pain.

Thanks Suzanne!

mzh · Post by **mzh** » Tue Dec 27, 2011 4:54 pm

Lesley wrote:
Have you been checked for an obstruction or a motility problem?
I have gastroparesis and a very spastic bowel. There is definitely a motility problem, which is NOT helped by my being on Norco for pain.

Thanks Suzanne!

I'm MZH, otherwise known as Marcia (not Suzanne). I don't know how Leslie or Suzanne got wrapped up in my comment/question. Ah, the joys of computers!

OK, now I have to go look up gastroparesis. LOL :work2:

harma · Post by **harma** » Wed Dec 28, 2011 12:23 am

ýes I thought of that too, taking a capsules every other day, but for one or the other reason I believe every day a very low dosage works better for me than every other day.

and interesting about the dogs taking budesonide compounded in 2 mg doses. Do the dog owners make them themselves or is it on the market?

Mmmmmmm, I remember tex posting an article here about dogs with bowel problems and the positive results of diet. Maybe we should starting consulting a vet in instead of a GI

mzh · Post by **mzh** » Wed Dec 28, 2011 8:43 am

harma wrote:ýes I thought of that too, taking a capsules every other day, but for one or the other reason I believe every day a very low dosage works better for me than every other day.

and interesting about the dogs taking budesonide compounded in 2 mg doses. Do the dog owners make them themselves or is it on the market?

No, they have it compounded at a pharmacy. It's often done via mail order too.

harma wrote:ýesMmmmmmm, I remember tex posting an article here about dogs with bowel problems and the positive results of diet. Maybe we should starting consulting a vet in instead of a GI

My pets have had veterinarians that I wish could have treated me too. (No joke!) They are exceptionally knowledgeable and open-minded; they seem to keep up with new info better than lots of MDs. For example, last year my own family doc went to a seminar on Vitamin D. They were taught that D2 50,000 units was the way to treat low levels. My doc had no idea that D3 works much better. Why? Because it isn't a prescription drug like D2 is. If it's not big parma, they don't know about it. Docs seem to rely on dubious seminars and not on newer info readily available on the Internet (not that all of it is true - except for here of course <G>).

Post by **tex** » Wed Dec 28, 2011 10:05 am

Marcia wrote:If it's not big parma, they don't know about it. Docs seem to rely on dubious seminars and not on newer info readily available on the Internet (not that all of it is true - except for here of course <G>).

Vets, on the other hand, seem very open to using the internet for staying up to date with their thinking, and the fact that they are more open-minded, as a group, is probably the basic reason behind this, and the driving force behind their desire to stay on the cutting edge of new developments.

I sometimes wonder if part of Big Pharma's "brainwashing" program for physicians includes a subtle form of extra training to dissuade them from being open-minded, and to convince them that the internet is an evil place, and should be avoided at all costs.

Tex

mzh · Post by **mzh** » Wed Dec 28, 2011 10:51 am

A lot of the problem is that MDs are probably overworked and don't have time to actually search the Internet for information that's there for the taking. And I mean studies. My doc actually showed me the manual he got at the Vitamin D seminar showing what he'd been taught. It was all outdated! I am now on D3, not D2. Luckily, he is pretty open-minded.

I do hope he'll be more careful with seminars he chooses to go to.

Robin · Post by **Robin** » Wed Dec 28, 2011 9:41 pm

Hi Lesley,

I am on Entocort too! I have been on it since October. I have seen a difference with my diet and meds. I would like to come off of it and just do diet alone but I don't think thats going to happen anytime soon. I am the highest dosage 9mg. I really would like to even start tapering off but every time I think about it I have a flare so I guess I will be on this for awhile. I don't have the C's and definitely don't have Norman, I don't know what you would call what I have. Its loose all the time and I still go 3-4 times a day. I know that the Entocort helps because I don't have the urgency anymore and I am not going 10-12 times a day. I want to do the MRT so that i can tweak my diet because I know that there is still somethings that are bothering me just don't know what they are. Or how to figure out what they are!

Its funny that everyone is mentioning Vets. I have a family member who happens to be a Vet and he has been telling me for YEARS that I have food allergies. Of course I never listened to him, I wish I had, I probably wouldn't be where I am today.

Don't get me started about Doc and Phams! I will be here all night talking about them! I just wish MD's would learn to think for themselves and learn to think out of the box. The way they use to before the Phams companies and Government took over!

Robin

Lesley · Post by **Lesley** » Wed Dec 28, 2011 10:43 pm

Marcia, sorry! I am now so confuzzledI have no idea who I am, let alone telling who anyone else is

Robin, I wish I knew whether entocort was helping me, but I have no idea. I can't tell whether it's affecting the inflammation of not. I am on 6 mgs, and dealing with C so dense it takes a bomb to get it going every few days.

I have to get off it. Between that and the Norco my bowels don't stand a chance.

harma · Post by **harma** » Thu Dec 29, 2011 6:44 am

I also do believe vets are more open minded, one of the reasons maybe that they have to serve the costumor more than docs. If one vets does not what you want to (with your animal of course) you simple go see someone else. In theory this could work with doctors, but will the insurance cover it? In the Netherlands it's easier to go shopping around with vets than with an PCP (you are lucky when you have one) or a specialist (you are happy once it is your turn). Vets come to your house if you want to (also not easy to take a cow or a horse to the vet), on times you want to and even than prices are still reasonable.

So a vet that is arrogant and thinks "I know better, because I have studied and I have an academic title", will simple run out of customers.

Also I think it has to do with the role of the big pharma in the human and vets medical industry. I would guess this one is less important in the vets industry (although there is a lot of money to earn in the bio-industry).

Should be interesting what the medical industry (for humans) could learn from this....

harma · Post by **harma** » Thu Dec 29, 2011 6:46 am

and by the way, I am not saying that there are no nice doctors are something (or that all the vets are nice people), i is just the system that makes one act and react in certain ways.