Entocort Update

harvest_table · Post by **harvest_table** » Sun Sep 10, 2006 2:05 pm

Hi Cristi,

Glad to hear you were able to find a Doc to write a compounded script for the Methimazole. Persistance and patience often pays off most of the time.

The Endo thought that while the D is caused by the LC, that the thyroid could be preventing me from completely getting rid of it. Who knows? I'll give it a shot and see. All these theories sound logical when talking about them...another thing if they actually work.

Your so right about that comment, your thyroid could be complicating things. At least you will know the thyroid med your taking does not contain something you are intolerant/sensitive to so you can rule out the methimazole causing the D, right? I'm so looking forward to seeing a post from you soon that indicates the Entocort is starting to work it's magic for you.

Grannyh,
So sorry to hear about your relapse and hope you find relief soon with Entocort. Just curious, are you dieting in anyway?

Bob,
Isn't a dry fart a wonderful thing? Glad to hear your feeling chipper-know it's been a long time. Isn't it scarey how Pred works- very powerful stuff. Enjoy every minute of this repreve, I think you have a good plan.

Double crossing my fingers, toes and eyes for each of you. Keep us posted.

Love,
Joanna

grannyh · Post by **grannyh** » Sun Sep 10, 2006 3:04 pm

I am watching what I eat but have not gone gluten free.. I am trying to lose the weight I gained when entocort first worked... and I ate everything that wasn't nailed down..LOL
grannyh

bobh · Post by **bobh** » Sun Sep 10, 2006 11:26 pm

harvest_table - Joanna wrote:Bob,
Isn't a dry fart a wonderful thing? Isn't it scarey how Pred works- very powerful stuff. Enjoy every minute of this repreve, I think you have a good plan. Love, Joanna

I remain amazed at how fast the Pred worked, this was the 4th morning and I have had single bowl movements with formed stools for the last 2 days. My condition just turned around on a dime, and it had been heading to the wall for 6 months (15 year condition, but the recent flare was raging 6 months.)

My dose of prednisone is steadily reducing, and it transitions to the Entocort later in the week. But I am not in mystery if it will "stop the flair" because it is DONE. My MD has me on the 6 Asacol a day during this whole time (with some help from Oma...) and that is a long range maintenance plan, with the Entocort just for flare ups. The Prednisone will be totally out of the picture by the end of this week.

harvest_table · Post by **harvest_table** » Mon Sep 11, 2006 1:09 am

Grannyh,

If your trying to lose some weight may I suggest droping the gluten products- it did wonders for me, 50 pounds in a year. Eliminating refined sugars, and processed foods speeded my weightloss with health benefits. lol

My dose of prednisone is steadily reducing, and it transitions to the Entocort later in the week. But I am not in mystery if it will "stop the flair" because it is DONE. My MD has me on the 6 Asacol a day during this whole time (with some help from Oma...) and that is a long range maintenance plan, with the Entocort just for flare ups. The Prednisone will be totally out of the picture by the end of this week.

Bob,
Just a heads up. So glad to hear your finding relief but please keep in mind that Pred masks problems. It's a bandaid, it really does not fix anything other than to give us relief from what ails us. Also, be aware that Asacol has lactose in it and I believe that your tests from Dr. Fine confirmed you were lactose/or casein intolerant?

IMHO, since you have been paying attention to your diet for so long that will play a big part in these medication choices your making at this time.

Take care and keep us posted.

Love,
Joanna

grannyh · Post by **grannyh** » Mon Sep 11, 2006 8:12 am

Asacol made me sick as a dog.. D was worse and I bloated like a toad. I take the entocort only.. but whatever works for you is what you need to do:)
grannyh

bobh · Post by **bobh** » Mon Sep 11, 2006 11:15 pm

harvest_table - Joanna wrote:Bob... please keep in mind that Pred masks problems. It's a bandaid, it really does not fix anything other than to give us relief from what ails us. Also, be aware that Asacol has lactose in it.

Yep, I believe the Pred would mask just about anything! I haven't felt this good in many years. Only 2 days at the full dose then started weaning down - I wouldn't trust this stuff over a long time span...

I am just so thankful that my first attempt at Entocort will be in a couple days - with no raging flair. So I hope to be able to maintain some degree of calm as I wind down to the weaker meds.

My milk issue was Casein - there wasn't a specific mention of Lactose on Dr. Fine's test, BUT I have read that anytime ANYONE has "D" there is a temporary inability to digest the lactose sugar (Nutritional Healing, by James Balch). Those that are into the SCD would also avoid lactose as a double molecule sugar, that they believe people with IBD cannot digest.

GrannyH wrote:Asacol made me sick as a dog.. D was worse and I bloated like a toad.

Y'know, I hadn't attempted any Meds for the MC up to several weeks ago - starting with Asacol. I did notice some side effects from the Asacol (though the MD and literature says it is unlikely). The MD wanted me to continue the Asacol as a "low risk maintenance program". As Joanna said, the Pred masks things, and my side effects WENT AWAY from the Asacol. In my uneducated opinion, I believe that the steroid has halted the inflammation, and somehow that may have begun healing the "leaky gut" aspect of garbage going into the blood stream that doesn't belong there.

I believe that is why I (personally) am very sensitive to any restaurant food, and any hint of "injected salts" in poultry. I am gonna continue to watch the diet - I pretty much have had to make all my food.

grannyh · Post by **grannyh** » Tue Sep 12, 2006 7:54 am

The doctor told me that reactions to Asacol were rare.. I tried it twice about 3 months apart with the same result..

The only reason I agreed to try the Entocort was that after going through the Rita evacuation last year.. I realized that being on such a restricted diet was impossible in a potential disaster situation and I could die from dehydration if the D was out of control and no medical help available. I have almost croaked from dehydration before so I knew the possibility was real. I had always been against the use of drugs for my CC... but Rita changed my mind immediately!

Now that the remission has ceased from the steroid overdose in May.. I was concerned that the entocort might not work a second time.. but I didn't wait long to find out... Only took it about three days to work... thank heavens!

grannyh

bobh · Post by **bobh** » Tue Sep 12, 2006 8:31 am

grannyh wrote:The only reason I agreed to try the Entocort was that after going through the Rita evacuation last year... I was concerned that the entocort might not work a second time.. Only took it about three days to work... thank heavens!

I am so glad that Entocort helps you - and others - and that maybe it can provide a longer term solution for me when I switch over to it in a couple days.

I will never forget when Rita hit. I was already looking at hurricane damaged houses along lake Pontchartrain for Katrina, and was staying in an RV I was renting from a guy under a metal awning. The corrugated roofing was already blown loose from Katrina, and when Rita came by we weren't in the direct path, but the "clattering" of loose corrugated metal roofing made it sound like the RV was gonna get blown away - it was rocking back and forth with the gusts of wind - and I was really dragging from sleep deprivation for the following days.

Jean · Post by **Jean** » Tue Sep 12, 2006 4:22 pm

Bob,

I'm not sure, but I don't think you can have lactose without casein in it. Maybe it's purified in meds, but I bet there's still a little in it.

Love, Jean

mle_ii · Post by **mle_ii** » Tue Sep 12, 2006 8:20 pm

Jean wrote:Bob,

I'm not sure, but I don't think you can have lactose without casein in it. Maybe it's purified in meds, but I bet there's still a little in it.

Love, Jean

Agreed. Most cases you could get Whey without Casein or lactose, Casein without Whey or lactose. But I've yet to see a source for Lactose without Casein or Whey.

bobh · Post by **bobh** » Tue Sep 12, 2006 9:29 pm

Wow, I didn't know that. Thanks for your help folks!

Lucy · Post by **Lucy** » Wed Sep 13, 2006 12:18 am

Hi all,

I've only seen lactose attributed to one other source, and that was to beets, I believe. It was an ingredient in one of those packaged meats that are sold at Whole Foods. Luce

cludwig · Post by **cludwig** » Wed Sep 13, 2006 11:14 am

Hi Everyone,
I have had a good news/bad news week. I started taking methimazole for hyperthyroidism this past weekend and I am feeling sooo much better. The anxiety, heart racing, deep joint pain, general muscle aches and intestinal cramping are all greatly improved. I didn't expect to feel any improvement this soon as all I've read says it takes a few weeks to work. The meds only block the production of new thyroid hormone but the hormones already produced will continue to be released.

Unfortunately I am still having D. I continue on the entocort and with the Paleo diet...am experimenting this week with cutting out all fruit. I have found examples on the net of long term D being caused solely by hyperthyroidism...so perhaps the longer I am on the meds the better chance I'll have of getting better. It's interesting how many symptoms these two diseases have in common.

It is wonderful to be feeling better. I feel like I have the strength now to figure the rest of this out.

Way to go Grannyh and Bob. So glad to hear you two have found a solution. It's good to know that when the situation is right that symptoms can clear up in days.

Love,
Cristi

harvest_table · Post by **harvest_table** » Thu Sep 14, 2006 12:52 am

Cristi,

Glad you feeling better. Hang in there- you have a mixed bag of worms to deal with and I admire your educated determination. Keep the faith!

Love,
Joanna