Need to share after doctor visits

JoAnn · Post by **JoAnn** » Tue Feb 24, 2009 11:52 am

Hi everyone, sorry I missed the chat. I was in bed with a rip roaring full blown head cold with every symptom. I just need to share and get your opinions. Last week I went for a follow-up with my gi after being on entocort for 3 weeks. He has decided to have me do 2 more months at the 9mg dose and then taper off for 2 months after that. He also said that most of his patients don't have to go this far and be on this strong of a medication. (glad I had all your input before I heard that!) He warned me that I could develop diabetes, moon face, and some other things. Have any of you had any of these problems? The only effects I've had seem to be good ones, but I guess the serious ones develop over time. I have one bm a day in the morning. It's still not perfect, but getting closer. My gut just feels better, and I feel a spark I haven't felt in a long time. He also said that I wouldn't have mc forever and that it would just burn itself out. (I wish! I didn't dare bring up gf because I could tell he wouldn't believe it.) I saw my PCP today and gave her all this information. She is in favor of the entocort treatment. She thinks the "spark" is because the entocort has restored my cortisol levels and the inflammation is subsiding. She is gf herself and agrees with managing things in that way. She says cortisol therapy is controversial, but thinks I may do well with a time release 10 mg dose when I'm done with entocort. Has anyone experimented with this? She put me on bioidentical hormones last Oct. that have helped me tremendously. My last blood tests showed high cholesterol and triglycerides so I've been put on Crestor and Metformin. My hemoglobin Alc was 5.9 (they like it <7, healthy adult range is 4.8-5.9 which put me on the high border) I've been on these meds for a month. She told me the entocort can raise these numbers. I don't know if it's my thyroid or mc or both together that's messed me up so much (and of course menopause I think is the big culprit behind everything!) I never had these problems until I went through menopause. Thanks for letting me share. I value your experience and opinions so much. Please let me know what you think. JoAnn

jillian357 · Post by **jillian357** » Tue Feb 24, 2009 11:59 am

Hi JoAnn,

I've been on 9mg of Entocort for almost a year now, and I've not had any of the side effects your doctor mentioned. Others may report different results, but for me I've had pretty good luck, other than the fact I just can't seem to wean down to a lower dose, not yet anyway.

MC will "burn itself out"?? I wish! LOL . I can't discuss diet with my gastro either, he just tells me "if something bothers your stomach, don't eat it"...well DUH!

I do hope the Entocort continues to work well for you, and that you are able to get over your cold too!

Take care!
Jill

JLH · Post by **JLH** » Tue Feb 24, 2009 12:24 pm

From www.worstpills.org

rosuvastatin (CRESTOR)
We list this drug as a Do Not Use drug because it causes kidney, muscle and liver damage

I got my Mother off Crestor because it is more dangerous than the other statins.

JLH · Post by **JLH** » Tue Feb 24, 2009 12:34 pm

From Worst Pills:
"Reporting Rate For Kidney Damage Is 75 Times Higher With Crestor (Rosuvastatin) [hide all summaries]
(December 2004)
The letter was prompted by a new Public Citizen analysis of adverse drug reaction reports to the FDA. The analysis found that the rate of reports of kidney failure or damage among patients taking Crestor is 75 times higher than in all patients taking all other statin drugs."

The doctors of my friend who was one day away from dialysis have her on this drug. Her cholesterol did come down dramatically........

Please do your own Google search on Crestor.

Jan · Post by **Jan** » Tue Feb 24, 2009 1:18 pm

JoAnn,

I have been on Entocort more than once since diagnosis and never had those side effects. I also have a neighbor who has been on it for almost 2 years and doesn't show any of the physical symptoms your Dr. tried to scare you with. I can say that when they first put on on predisone I had the "moon" face and put on a bunch of weight.

Jan

Post by **tex** » Tue Feb 24, 2009 1:42 pm

Hi JoAnn,

Sorry about the cold, but I'm glad to hear that your GI symptoms are so much better. I believe that you handled your GI doc very well, by not mentioning the diet. I suspect that you read his signals, (body language, or whatever), quite well.

I find it very interesting that so many GI docs feel obligated to volunteer the same unnecessary information to their MC patients, namely that "all their other" MC patients are able to reach remission quite easily, by following a simple treatment program, but the patient they are talking with at the moment, of course, is having a much more difficult time than "normal".

I have a hunch that they repeat that line to every patient, in hopes of convincing themselves that it's true.

It sort of reminds me of the old line about "the guilty dog barks first".

The bottom line is that most GI docs don't have the foggiest idea how long it takes to achieve remission with MC, regardless of the treatment method, so they virtually always prescribe a treatment plan that is unrealistically short.

JoAnn wrote:She says cortisol therapy is controversial, but thinks I may do well with a time release 10 mg dose when I'm done with entocort. Has anyone experimented with this?

Are you referring to treatment with hydrocortisone? I'm not aware of anyone here who has tried that treatment. That treatment is targeted more to adrenal issues, I believe. I don't see how it would help MC, but I admit that I know practically nothing about the treatment.

I haven't had any personal experience with Entocort, so I can't help you much with symptoms. However, I will point out that even though doctors frequently warn of the symptoms you mentioned, (and others), the most frequent issue mentioned on this board, seems to be adverse neurological effects, (nausea, dizziness, balance problems, etc.), which are generally considered to be quite rare, in the literature. IOW, the side effects that are supposed to be more common, are not often mentioned by our members. Instead, they tend to mention side effects that are supposed to be rare.

I agree with you that thyroid issues, and menopause are major "wild cards" in the "game" of MC. Thanks for the update.

Tex

Dee · Post by **Dee** » Tue Feb 24, 2009 7:24 pm

Hi JoAnn!
Now, my GI told me just the opposite!! He stated that he saw no harm with long term use of the Entocort. I've been on it a couple of years with no side effects except that I do seem to bruise easily.
Interesting about the cortisol levels. I'd like to hear more about that.
I don't know how often you see your PCP, but if it was me, I'd schedule 3-6 month follow ups to get your cholesterol checked. That way if you have a problem with the new meds she put you on it would be caught quickly. Not saying that you will experience any problems, since everyone is so different.
Have you tried the bread?? If so, what did you think?? Another case of everyones tastes are different.
Sorry to hear that you caught the awful virus that has been going around and hope you are feeling better..

Dee~~~

JoAnn · Post by **JoAnn** » Tue Feb 24, 2009 9:52 pm

Thanks Jill, Jan, Joan, Tex and Dee, I knew I could count on you guys. I'm so glad that your experience with entocort has been so positive. I'm hoping for the best. It's so interesting to hear all the different stories we get from those gi doctors. Tex, you are the expert in my opinion. Yikes Joan! I had no idea about the Crestor. I'm on 5 mg and I haven't had any side effects, but I guess I'd better check it out and talk to my doctor. She's pretty cautious about what she does with me and listens when I have concerns. I've had some pretty bad reactions to other drugs in the past. I think she's thinking that the cortisol will help my overall health. I've been seeing her every month since last fall when I switched to her practice. She's a good mix of holistic/traditional approaches. I'm supposed to go back in 2 months. She's always on top of my blood tests. I'll have to learn more about the time released cortisol. Dee, I have been dying to try those bread mixes. They have been out on my counter since they arrived. It seems like every weekend I planned to bake, I either got sick or had family interfere with my plans. I have a two week break from school and I am baking on Thursday no matter what! I'll email you Thursday and let you know how it goes. I also had to go buy coconut milk to replace the eggs. I'm really excited to see how that works. Thanks to all of you again. I'm so glad you're so willing to share your experiences. I've learned more from you than from any of my doctors and your experience has been so comforting. I know I would have freaked out more than once if I had not known the things you've taught me. You're wonderful! JoAnn

JoAnn · Post by **JoAnn** » Tue Feb 24, 2009 10:03 pm

Dee, I remembered something else my pcp mentioned about the cortisol. She talked about a book she used as a reference and loaned it to a patient who never returned it. She said the book was pretty expensive. It's called Safe Uses of Cortisol by Wm. Mck. Jeffries, MD. I looked it up on Amazon and it's not as much as she mentioned, but it's still pricey. They have a used paperback edition for around $68. I'm going to try to locate it at the library. I looked at the table of contents on Amazon and it looks interesting as far as connecting to autoimmune issues. Thought you might be interested. JoAnn

JLH · Post by **JLH** » Wed Feb 25, 2009 9:08 am

If they don't have it at your library, ask for an inter-library loan.

Gloria · Post by **Gloria** » Wed Feb 25, 2009 8:24 pm

Hi JoAnn,
I'm glad to read that you are only having 1 BM a day. That's terrific news!

I've been on Entocort for 20 months and haven't had any bad side effects. Some doctors equate Entocort with Prednisone, but Prednisone is systemic and affects the entire body, while 90% of Entocort stays in the colon, which reduces the side effects.

I'm taking Vytorin for my cholesterol and haven't had any side effects from it, either. It has dramatically reduced my numbers.

Gloria

JoAnn · Post by **JoAnn** » Thu Feb 26, 2009 12:09 am

Hi Gloria, it's good to hear from you. I knew you had had a good experience with entocort and so far it has been good for me. When I saw my pcp on Tues., I talked to her about it and she looked it up on her computer. I don't think she's had any experience with it but was very supportive of using it. I have felt so much better this past month being on it. I also wonder if the effects of going gf, df, egg free, soy free are beginning to pay off. She attributes the "spark" I feel to the entocort, but I wonder if it isn't the combination of everything. Did you experience anything like this when you started entocort?
My friends can't believe how I eat now, but it's amazing how quickly you adjust and how creative you get. I ordered the chocolate chips you use and they arrived last week-what a treat! Have you heard of Original Fast Foods? I know you have a daughter in Utah and so I thought you may have heard of them. They do bulk ordering from time to time and I just got an email that they are ordering pasta from Italy. I ordered some last year (before I knew I was gluten sensitive) This pasta is whole wheat, but tastes fantastic. My family won't eat anything else now. Anyway, in this new order they have gluten free pasta offered, so I am going to order a couple of cases. It's priced better than the hfs and the shipping is free. We have to pick it up at their home in Orem. Let me know if you want more info. Also, thanks for the cholesterol info. I emailed my dr. today with the concerns Joan raised and I'm waiting to hear back. JoAnn

Gloria · Post by **Gloria** » Thu Feb 26, 2009 9:53 am

I don't remember having a sudden change in the way I felt once I went on Entocort or changed my diet, but not having D anymore was, of course, a great relief. It was also nice to finally have an answer and a solution for what I'd been going through. Just having this support group is a big morale booster.

You seem to be adjusting to the diet very quickly. I recall that it was several months before I could go into a grocery store without shedding a few tears.

I'm glad you were able to order the chocolate chips. When I melt them and shape them into molds, I can't tell the difference between them and regular candy bars.

I'll be going to Utah 3 weeks from today for 6 days. My SIL is the coordinator of the Wasatch Fly Fishing expo hosted in Sandy and DH helps him set up. There may be a chance we could get together, though my DD keeps me pretty busy when I'm out there.

I've never heard of Original Fast Foods. It's amazing that they offer gluten-free pasta. If you have some information, I might contact them. It probably wouldn't be cost-effective for me to order from them, but you never know.

Gloria

Courtney · Post by **Courtney** » Thu Feb 26, 2009 10:40 am

JoAnn,

I didn't have any success with the Entocort, but going off all sources of soy has made a huge difference in how I feel (though not yet much difference D-wise). I was getting terribly fatigued between 8 and 9 p.m. every night, and now I feel like I can actually make it through the day. Not exactly a "spark" but I'll take it. I did notice a definite difference, though.

Love,

Courtney

JoAnn · Post by **JoAnn** » Thu Feb 26, 2009 11:50 am

Thanks Gloria and Courtney, I'm sorry the entocort wasn't helpful to you Courtney. Even though I'm feeling good about it now, I do worry about the long haul. I've had a history of things working for awhile and then not working. Hopefully the entocort is different. I do feel that the diet is of equal importance or more in my case. Gloria, that would be fun to meet you when you come to Utah. Too bad it isn't now when I have a couple of weeks off. My husband loves fly fishing. I'll have to tell him about this event. It's probably at the Sandy Expo Center. Let me know your schedule when the time approaches. I hope it's not during my parent-teacher conference week. JoAnn