Newly diagnosed and confused

[Gabes-Apg]

I really do not think that you could prepare and be mentally and emotionally ready for something like MC being in your life.
there are way too many variables, twists and turns and ups and downs,

and i agree - we are pretty blessed out here, we do have a beautiful country.


depending on how many of the previous posts you have read, there has been many discussions about doctors and specialists.
Some of the PP family have been blessed with a good clear minded doctor and specialist who is supportive, and a few have had some totally incompetant idiots and then the rest of us have the area inbetween.
A common situation is that they will treat the symptoms and not look at the cause. They are 'trained' that if you walk in with a symptom, they prescribe medication to fix that symptom, and if you improve then they have suceeded.

in treating one symptom they may aggrevate another and some doctors dont always look at the long term effects of the drug.

hope you have a better day
take care

[Rosie]

I'll add my welcome, DMarcus. I don't have much to add to the good advice already given. I'll just say that this forum is awesome! It's been around for many years, and has such a wealth of accumulated experience that no matter what the question, some folks here are bound to have encountered it and have some advice to share.

Rosie

[Pat]

Diane,

Find out from your doctor more about the breathing tests that you did. Were they hydrogen breath tests for fructose, lactose, and small intestinal bacterial overgrowth? They should do those tests and will tell you if you have a bacterial infection and if you are intolerant to fructose and/or lactose. These can be very helpful tests. Diet is of course the best treatment but sometimes meds are needed while figuring out the diet which can take a long time. Good Luck and welcome to the board!

Pat

[DMARCUS]

Great Pat. Thank you for the helpful suggestion. At my upcoming meeting with the GI, I will definitely ask more about the function and results of the breathing tests.
Thank you much!
Diane

[DMARCUS]

Today was the sitdown visit with the GI doc to come up with a solution to continue controlling my MC symptoms. He feels that Pepto bismol and Immodium are not really doing much to help MC symptoms and it has been my experience as well. I am now tapering off Prednisone and he has agreed to put me on small dose of Entocort EC. We had a general discussion about MC and he seemed very knowledgeable and willing to listen and share his experiences with disease which he is actually taking very seriously. He first talked about putting me on very small doses of Purinethol or similar med and I told him I did not agree taking these meds. I suggested the Entocort EC and he agreed. However, he talked about his concern that, over time, Entecort might show some side effects similar to Prednisone, but as far as I was concerned, after reading many posts on this forum, I was convinced that this is the course of action I preferred to take after having healed the inflammation with Prednisone. By the way, I have never felt so good in all of the last couple of years. Plenty of energy, good sleep, normal stools... Evidently, my digestive system (even before the start of MC symptoms last April) had been really off for quite some time. I talked about dietary restrictions and a GF diet and he agreed that some findings suggest some similarity with Celiac disease although he did not particularly emphasize the dietary aspect. Altogether, it was a good visit and I felt that with his medical guidance and vigilance plus progressive dietary tests I have learned on this forum, I should be doing okay. Now it is easy to say because I am free of symptoms right now, however, I have good hope!

Thank you everyone on this forum for all the good ideas, thoughts, information, wisdom. Let's hope this will be an easier journey from now on!

Diane

[tex]

Diane,

That sounds encouraging. There is always some risk involved with the long-term use of any medication, (or short-term use, for that matter), but Entocort has proven to be generally safe and effective for long-term treatment, especially at the lower doses. What dose did he prescribe - 6 mg per day, or 3 mg per day?

Please keep us posted on your progress, because that's how we learn, by sharing results.

Tex

[Joefnh]

Diane that's good news that you will trying out the Entocort. I have been taking it since the end of April and have noticed a similar response; increased energy and overall less pain and of course little to no D. It has helped quite a bit but I am also following a strict paleo like diet. My goal is to be able to taper off of the Entocort within the next 4 to 5 months.

I hope your treatments work out well

Best wishes

--Joe

[Gabes-Apg]

Diane
congratulations! a good doctors visit and feeling better is great progress.

and yes, you definately feel like a new person, once you get rid of those niggling whole of body symptoms!


take care

[Gloria]

Diane,

It's good to read that your GI is on the same page as you and is willing to work with you. Hopefully your transition to Entocort from Prednisone will go smoothly and you'll continue to heal.

Gloria

[DMARCUS]

Wayne,

I am still tapering off Prednisone and the dosage of Entocort EC (3mg) recommended by the GI doctor will be 1 to 3 pills per day. I am basically left to figuring out how much I will need. Wayne, what it your experience? If the dreaded D comes back, is it better to attack with a larger dose like 9mg and then decrease as needed? Is 9mg conventional dose (if there is such thing)? The doctor told me that mine was a textbook case of CC

Diane

[Joefnh]

Diane, I'm sure Tex will check in on this soon... But here is my 2 cents worth

9mg is the starting dose for Entocort, it is also the highest recommended dose. Most docs will prescribe the 9mg dose for 1-2 months then taper to 6mg for a period of 1 - 3 weeks then to 3mg for a similar time-frame. From what I have read here and personally experienced, the 9mg for 1 - 2 months is not enough time, depending on the severity of the symptoms. If your doctor is willing, I would try the 9mg for at least 2 months and then attempt to taper to 6mg. If that does not work, repeat the 9mg dose for an additional 1 - 2 months before trying to reduce the dose again.

For my particular case, I tried to taper after 2 months from 9mg to 6mg and was not successful, the symptoms returned with a vengeance. After speaking with my GI doctor, he has agreed to allow for up to 6 additional months if needed. I am currently in my third month of taking the Entocort at the 9mg level and have found it to be quite beneficial in conjunction with a strict GF/DF/SF diet.

This is not a medication to be taken 'as needed', it requires a methodical steady state dosing for a long enough period of time to allow for healing to occur. The whole dose should be taken at the same time of day every day, usually in the morning.

Overall this medication appears to be well tolerated, but keep in mind it is a steroid although with minimal systemic activity.

Best wishes Diane, I'm sure Tex and other can add to this topic with further details.

--Joe

[Gloria]

Diane,

As Joe mentioned, most doctors think it's possible to taper more quickly than reality would suggest. The best tapering schedule is one that the patient determines. We are all different in how quickly our gut heals and much depends upon the number of tolerances we have and how quickly we determine them.

I am presently tapering from 9 mg. after being on that dosage for three months. But I'm tapering fairly slowly. I take 6 mg. for two days, then 9 mg. for one day, then back to 6 mg. for two days, and so on. I tried tapering to 6 mg. for three days, but began having some deterioration in my stool, so I went to my present schedule. IMO, this is the best way to taper, by adjusting the dosage as needed.

I always take all my dosage in the morning with breakfast.

Gloria

[tex]

Diane,

Joe and Gloria pretty well summed up the consensus of opinion of the members of this board, based on years of experience with Entocort. I agree that most people are better off taking the full recommended dose long enough to allow the gut to do some significant healing, before tapering down the dose. A few people are more sensitive to budesonide, (the active ingredient in Entocort EC), than average, so they can get by with a smaller dose. Out of hundreds of members who have used it, I believe we have only 1 who was able to start with only 1 pill per day, and maintain control. We have probably a couple of members who were able to get by initially with 2 per day. Everyone else has needed the full recommended dose of 3 capsules per day, in order to maintain control.

If I remember correctly, when the initial trials required for FDA approval were carried out for Entocort EC, various doses were tried in various trials, with mostly proportional success rates. I'm listing this information from memory, so rather than to try to use more detailed percentages, for remission rates, I'll just say that approximately a third of patients, (with Crohn's disease), were able to achieve remission, (based on a disease symptom rating score), after taking 1 capsule per day, (3mg), for 6 weeks. At 2 capsules per day, (6mg), approximately half of patients achieved remission. At 3 capsules per day, (9mg), approximately two-thirds of patients achieved remission. Trials were also done with 12mg per day, and 18mg per day. 12mg success rates were only slightly better than the 9mg rate, while 18mg, (double the labeled dose), boosted the remission rate to around 80%, or so. Anyway, based on success rates, AstraZeneca settled on a recommended label rate of 9mg per day.

It's relatively easy to tell if you are especially sensitive to budesonide, because in that case it will either cause neurological symptoms, (dizziness, balance issues, blurred vision, etc.), or in a few cases, it will cause constipation. If that happens, you know that you probably shouldn't be taking as much. Unfortunately, a few people experience neurological side effects from Entocort at any dosage level, so they have to stop taking it. And, of course, it isn't effective at resolving symptoms for everyone.

If the dreaded D comes back, is it better to attack with a larger dose like 9mg and then decrease as needed?

Yes, it's best to try to stop the reactions as quickly as you can, and for most of us, that requires 9mg per day.

The bottom line is, for most of us, the labeled dose of 9mg per day tends to be the most reliable treatment. It takes a while to get all of the Prednisone out of your system, though, so you may not be able to safely take a full dose of Entocort for a while, (hopefully, your doctor advised you about how long you should wait).

Good luck with your transition to Entocort.

Wayne

[DMARCUS]

Joe, Gloria and Tex,

Thank you! I am grateful for the valuable information and feel confident about taking the course of action you are describing. I am very gradually decreasing the Prednisone and can already feel a pulling sensation in my abdomen although the old "engine" seems to continue to function adequately. I feel that this whole experience is like building a house of cards and acquiring the skills to keep it intact!

Diane

[tex]

I feel that this whole experience is like building a house of cards and acquiring the skills to keep it intact!

That's a very good analogy. Early on, remission is very fragile, but as the gut slowly heals, (it can take a year or two), it becomes more and more stable. Of course, if we choose to not make any diet changes, our intestines will never heal completely, because the inflammation will continue to be generated as we eat foods that trigger an autoimmune reaction. However, for many people, once remission is achieved, and the gut has healed to a certain minimum level, a small maintenance dose of Entocort, (1 pill per day, or in some cases, every other day), will keep the inflammation down to a level below the threshold at which a reaction would be triggered, so that they can effectively keep their symptoms under control that way.

Tex