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Hi everybody...I had my GI. appt. this afternoon and things went well.(But, I have gained 7 pounds ) He wants me to start taking the Entocort every other day for 2 mos. If that works, we will try one pill every 3 days. I'm going to keep my fingers crossed! I told him for sure I wouldn't be eating chef salads every day. I also asked him about bone loss and he agreed that I should have a bone density test to see how I'm doing. As I was leavng, I mentioned the wonderful support from this group and he asked if I would send him our web site address. He thinks a lot of his patients would benefit from it. He didn't seem quite this enthusiastic about the idea two years ago...this is real progress! Does anyone mind if I send it to his nurse since we have gone public now? I wanted to check before I did it...thanks...TTFN...JJ
Yes, do get the bone density test. My doctor was just talking to me about that on Friday. Anyone on long-term steriod use should monitor their bone density.
I see no problem passing on the info about the site - anyone else? We are, after all, open to the public.
Glad your appointment went well. I hope the tapering off with the Entocort works for you. It did for me. While I was taking the Entocort my GP had me take Fosamax for bone density, even though my bone density test was ok. Now I don't take either of them. My CC hasn't come back and once I was finished with the Entocort I lost all the weight I had gained (about 15 lb.) and also got rid of the leg cramps, bruising, and waking up 5 times a night to urinate! It had a lot of side effects for me, but it was worth it of course.
Sure, you should share the website. It would be selfish not to. Wouldn't it?
As Peg and Kathy mentioned, don't hesitate to pass out the URL or a link, to anyone you think might benefit from it. We will try to help anyone we can.
Wow, having a doctor passing that information out to his patients, is almost like an endorsement. LOL.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi..thanks you guys...will call his nurse tomorrow with the info. unless I hear otherwise before then.
Hazel, I am encouraged to know that your CC did not come back...are you GF? Do you eat everything? Boy oh boy, my fingers are crossed that all will be OK....TTFN...JJ
Glad your appointment went well too- that's good news!
Crossing fingers for you as you wean down to a lower dose. Entocort was a good med for me to take- the only side effect I noticed was brusing and had no problems tapering off it.
I wish we all could have a such successfull recovery story to share as Hazel does. It can happen- it IS possible.
JJ,
No, I am not gluten free. I think my CC came from taking too much naproxen for a knee injury. I took it for years and very stupidly took 3 instead of 2 every morning, thinking more would be better. Ha! When I started having "symptoms" I had a colonoscopy and was diagnosed wth CC. After over a year of taking Entocort I tapered off and, as I said, now I have no symptoms. It is funny though, I am never sure/always fear a flare up. Any little change in norman has me worrying, but so far so good. Needless to say, I no longer take NSAIDS, and for me I think that is the key.
Will be keeping my fingers crossed for you! I hope I get to read your happy story in a few months.
Doesn't is stink to have weight gain! I gained 30 lbs after my thyroid surgery...have only lost 5 lbs.
I did the same thing on Entocort. I take one every 3 days. Its working fine. I had a bone density test last year at the request of my GI. I think I have to get one every couple of years.
Keep us posted okay?
Hugs
Lori
"The manner of giving is worth more than the gift." ~ PIERRE CORNEILLE
Thanks for the encouragement everybody! I am getting used to taking the entocort every other day...no problems yet,
My real weight gain started last year soon after Thanksgiving. I was eating a ton because I was worried about my melanoma surgery...then the holidays hit and I just kept eating. I am back on track now....I was even good at a party last night. I'm doing the low carb thing, so ate a few pieces of broccoli, cheese/sausage, and shrimp for an appetizer and had chicken wings, and salad for dinner...I skipped the gooey chocolate cake! No, actually I am proud of myself...that was not an easy thing to do..ha ha...I love sweets!
First of all, share away. Giving it to a doctor is definitely a sign that we are a reputable resource on the Internet.
Now, as to Entocort. You are all so encouraging that I am going to start reducing my dosage very gradually as of today. I take two a day. I am going to reduce to 2 one day and 1 the next. We'll see how it goes. Thank you!!!
) He wants me to start taking the Entocort every other day for 2 mos. If that works, we will try one pill every 3 days. I'm going to keep my fingers crossed! I told him for sure I wouldn't be eating chef salads every day. 
I also asked him about bone loss and he agreed that I should have a bone density test to see how I'm doing. As I was leavng, I mentioned the wonderful support from this group and he asked if I would send him our web site address. He thinks a lot of his patients would benefit from it. He didn't seem quite this enthusiastic about the idea two years ago...this is real progress! Does anyone mind if I send it to his nurse since we have gone public now? I wanted to check before I did it...thanks...TTFN...JJ
No, actually I am proud of myself...that was not an easy thing to do..ha ha...I love sweets!