For Erin D about Pred/Entocort

mini · Post by **mini** » Thu Mar 20, 2008 5:54 am

Hi Erin

I came off the pred after 6 weeks and within 4 days the 'D' returned hence the GI put me on Entocort, at the moment I have been told to stay on this for 3 months until I see a GI again. Before I see the GI I have to have been off Entocort for 2 weeks to see if meds have worked this time if not they have said they will put me on methotrexate.

At the moment it is hard getting a GI appointment due to our wonderful National Health Service so my GP has said to stay on the Entocort until I can see a GI to know for sure which direction we are to continue with medication.

So pleased to hear you are feeling better

ErinD · Post by **ErinD** » Thu Mar 20, 2008 6:05 am

Good Morning Mini,
Thanks for your info on the Pred/Entocort. I spoke to my GI yesterday after my first week on the pred and he told me to maintain this dose another week and then we will start to taper. I am feeling mixed about this actually because i am feeling so good on the pred, not having many side effects and i am afraid of it all coming back when i start to taper like i read about so often. I am hoping that the taper will go smoothly and he thinks he is going to go the Asacol (or similar) route for maintenance while tapering but we shall see. He wanted to closely monitor me on the taper to make sure it doesnt flare up again.
Sorry to hear that the healthcare crisis there is such a mess, it is sad to think you have to wait to be seen when so sick!

Post by **tex** » Thu Mar 20, 2008 9:12 am

Hi Mini,

Reading your post, I get the impression that your GI doc thinks that he can actually "cure" MC. As most of us here have discovered, MC cannot be cured, it can only be controlled. (Of course, it can be controlled very effectively, but it requires continuous treatment, not a high dose of meds followed by a few days of remission, and then the symptoms return, and the cycle starts all over again).

If the Entocort is controlling your symptoms, you would be much better off, (as far as your long-term health is concerned), if you remained on a maintenance dose of Entocort, rather than switching to methotrexate. This quote pretty well sums up my opinion of methotrexate:

Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only use methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.

The red emphasis is mine, of course. That quote comes from this National Institutes of Health site:

http://www.nlm.nih.gov/medlineplus/drug ... 82019.html

With your medical background, you're probably already familiar with methotrexate, but if you would like to see a refresher course on the risks involved with using it, that site covers it pretty well.

People who use meds such as methotrexate usually eventually discover that it no longer works from them, and they have more problems than when they started using it, and nothing provides any relief for them, any more. One of my old high school classmates is in that situation now, due to treatment for RA, and there are many, many more, all over the world. Years ago, I did my best to try to convince her and her family to try cutting gluten out of her diet, to see if that would allow her to discontinue using the Remicade, methotrexate, etc., but they refused to even try, and insisted that her doctors knew what they were doing. Now she can't even get out of her wheelchair without help, and none of the meds provide any relief anymore. We certainly don't want that to happen to you.

Tex

thedell19 · Post by **thedell19** » Thu Mar 20, 2008 10:31 am

Hey Tex-

Is Methotrexate along the same lines a Imuran and 6mp? I know those supress your immune system and they do use those drugs for cancer patiens. I know that because my Aunt has breast cancer that just re-appeared out of nowhere and that is one of her options. However I thought the dose they give to Cancer patients is much larger than the dose they use for treating a from of IBD. I could totally be wrong here but I think that is what I have read various places.

But I would agree that Entocort is such a lightweight steriod because it doesnt get absorbed like pred so less side effects. I know there has ben some some some research on Entocort as a maintenance dose but do many GIs even consider a maintenace dose of a steroid? I would think they would be ore apt to giving you Asacol (has lactose in it), Colazal, and Pentassa... and none of those ever worked for me.

MaggieRedwings · Post by **MaggieRedwings** » Thu Mar 20, 2008 11:42 am

Just to jump in real quick here. My Gastro wanted me to also be 2 weeks without Entocort and then report back. I tried it and it did not work. I convinced him that a maintenance dose is a necessity since MC does not just disappear. He agreed and I am still trying to establish what the correct dosage is for me. Right now I am at 3 mg every 6 or 7 days and that is not working. With him I told him 3 mg every 3 days at most and that seemed to work. Just trying to get it at the best pacing I can.

Norman is never around.

Love, Maggie

Post by **tex** » Thu Mar 20, 2008 1:31 pm

Andrew,

Yes, there are several drugs in that group that are commonly used to suppress the immune system. I think they were originally developed to prevent the body from rejecting transplanted organs, and then they were found to work for RA, and then extended for use with IBDs, and no telling what else. The group includes methotrexate, azathioprine, (Imuran), and cyclophosphamide, (Endoxan, Cytoxan). The liver converts Imuran into 6-MP, but I believe that 6-MP itself is usually used to treat leukemia, (though I've seen trials where 6-MP was used to treat Crohn's and UC).

Dosage is pretty much at the discretion of the prescribing doctor. There are always guidelines, of course, but I believe that they can prescribe whatever rate they consider suitable for the patient and the circumstances.

As Maggie pointed out, the doctors are slowly learning, (mostly from patients such as those of us here, who are proactive enough to take an interest in our own welfare), and most of them will eventually learn what it takes to keep MC under control, safely and reliably. The doctors who already "know it all", and are unwilling to listen to their patients, will probably never learn.

Tex

Pat · Post by **Pat** » Thu Mar 20, 2008 1:52 pm

I am on Imuran for MC and was on Prednisone also. ( 5 weeks at 40 mg, then a week at 30, then 20 then 10.) The Pred did not work and actually made me feel bad. The doctor was willing to take me off the Pred and replace it with Entocort which so far (One week) is not any better than the Pred. as far as controlling the D. ( I was on Imuran and 10mg Pred and 9mg Entocort for a week, only the last 2 days have I been on Imuran and Entocort. He says Entocort is so new and they really don't know how much goes systemic and is a steroid that he plans for me to take Imuran for my maintenance med. He will probably up my dose next month depending on how I am doing and results of blood tests. Imuran has been around for 40 years and he has patients who have been on it for 20 years for a variety of reasons with no side effects. They can actually do blood tests to see if you are at a therapeutic dose. I'm sure that if Entocort alone ( and maybe diet) would have worked and I could have reduced the dose from 9mg to 3 mg like many do. That would probably have been a good choice. But I have been a difficult case even on the GF, SF, DF and fructose free diet. Diet has not helped me. And I have been ultra careful and faithful with it. I just recently tried corn free for 2 weeks and no difference. Just thought I would throw in my 2 cents. We all have differenct experiences and react differently.

Pat

mini · Post by **mini** » Fri Mar 21, 2008 9:14 am

Hi Tex

Yes, I agree with what you say I have done some research and believe that methotrexate is not the direction to go for treatment of MC, my GP feels we should stick with the Entocort. It is something that I need to discuss with the GI when the time comes, so advice is taken on board and thank you for your input.

Post by **tex** » Fri Mar 21, 2008 10:17 am

Hi Mini,

You're very welcome. The big question is: Is the Entocort working for you?

Actually, from what I can find, while it is certainly true that methotrexate has been used for many years, to treat Crohn's disease, (as Pat pointed out), apparently it has been used primarily/only bas a way to wean patients off of prednisolone, after it has been found that they cannot maintain remission without continual use of the steroid, which, of course, would eventually lead to very serious health problems, in the long term.

I don't believe that it is normally used to treat cases that are refractory to Prednisone - rather, it is used as a follow-up treatment, to prevent having to remain on Prednisone indefiinitely. IOW, what your doctor is suggesting is not out of line with conventional practice, it's just that it was a policy that was developed before the advent of budesonide, (Entocort), and for most patients, budesonide is a far safer choice for a maintenance treatment program.

Tex

mini · Post by **mini** » Sun Mar 23, 2008 11:01 am

Hi Tex

Yes, the Entocort is working very well no sign of the big 'D' since taking it. However, I now have a GI's appointment on the 25th April and have reduced it down to 3mgs per day before I stop taking it two weeks before seeing the GI. Since doing so have noticed pain coming back in the right hand side but, still no sign of 'D'. I have given your comments a great deal of thought and feel if medication is still required I will argue my case to stay on the Entocort rather than change to methotrexate.

Thanks once again for your input.

Post by **tex** » Sun Mar 23, 2008 11:15 am

Mini,

You're most welcome. I hope the Entocort continues to work for you at the low dosage levels. That will make it easier to determine a maintenance dose for long term use, (assuming that your GI doc is willing to go along with that plan).

Good luck,
Tex