just joining up

Sheila · Post by **Sheila** » Tue Dec 06, 2011 7:17 pm

Welcome to the site. It has been a life saver for many of us. I was diagnosed with MC/CC and test negative for celiac disease. My GI prescribed entocort after other drugs failed. I also eliminated all gluten immediately on the advice of this website. I had the Entero lab tests done including the gene test. My GI told me that the Entero lab tests were controversial but when he saw the results of the gene test (celiac gene and gluten intolerance gene present) he had to concede that I probably did have celiac disease. He decided I should stop the entocort until I reminded him that I also have MC/CC. Good luck with weaning off the pred. I have had no adverse side effects from taking 1 entocort a day but have had to eliminate soy, dairy, eggs as well as gluten from my diet. I tried taking the prescribed 3 entocort a day and that caused total constipation. You are in the right place to learn about your MC. Good luck

Sheila

brownie · Post by **brownie** » Wed Dec 07, 2011 5:44 am

Hi everyone,
I really want to get the Enterolab tests done just to know and it's on my list of things to do maybe after the holidays.

The reason for bringing up the Pepto treatment besides the relief it may offer is DH and I are scheduled to tour the Holy Lands in February. Can you imagaine? I must have lost my mind but it was an opportunity to go with his family on the trip of
a lifetime. I thought that the Pepto might hold off the worse symptoms maybe but I can sure imagaine not eating much anyway to be safe. We did buy insurance, hehe. Had to with this situation.
There are some really good tips in the travel section here but I will take any and all advice you are willing to offer on this one.
Brownie

brownie · Post by **brownie** » Wed Dec 07, 2011 5:49 am

BTW my GI said stop prednisone and take entocort as in cold turkey. I didn't think that
could be done either but called the local pharmacist and he said it was safe. Other than the D I had anyway, I've had no bad effects from this but still feel it's not recommended.

Post by **tex** » Wed Dec 07, 2011 11:04 am

Brownie wrote:BTW my GI said stop prednisone and take entocort as in cold turkey. I didn't think that
could be done either but called the local pharmacist and he said it was safe.

I'm not a doctor, nor a pharmacist, but I would be very surprised if you do not have withdrawal symptoms from the prednisone. Obviously both your doctor and your pharmacist believe that prednisone and Entocort are equivalent corticosteroids. They are not. Unlike prednisone, only up to 19% of the budesonide in Entocort is absorbed into the bloodstream, therefore it will not replace the prednisone's systemic effects, and that will almost certainly result in withdrawal symptoms due to undesirable excursions in cortisol levels, and other adrenal issues. Hopefully, the effects won't be very severe.

Regarding your upcoming trip to the Holy Lands, we have a member in Amman, Jordon, (Harma), who is originally from the Netherlands, but she recently moved to Amman, to live there permanently. I believe she speaks English, (she certainly writes it well), and she is in the process of learning Arabic. I'm sure that she would be thrilled to meet you, and she could surely offer some excellent tips for sightseeing in that area. She has visited most of the historic sites, and written about them. You can check out her blog by clicking here. Since MC is such an uncommon disease, most of us would never meet another person who also has it, but this board often serves as a way for members to meet other members who are dealing with the same issues.

Tex

sarkin · Post by **sarkin** » Wed Dec 07, 2011 12:03 pm

I do well with Pepto - it helps some folks, but others cannot tolerate it. You'll find your own toolkit, over time - many people prefer Imodium. I carry Pepto always, but take it rarely. In the beginning, I did take 8/day, which is quite a lot (and you might find at least partial relief with considerably less). You might want to bring a couple of options on your trip (I think I had the presence of mind to do that when I traveled in June). It would be worth knowing whether Pepto is a useful ally, or not, before you go.

Have a wonderful journey!

Sara

Lesley · Post by **Lesley** » Wed Dec 07, 2011 12:22 pm

I am another Holy Lands member. I am from Israel, and have visited all the sites in Israel many times, though not lately (other than the old city of Jerusalem, and the western wall). And I speak fluent Hebrew.

Responses to coming off prednisone are going to differ depending on the dose you took, and for how long you were taking it. If you were taking a 40-60 mgs a day, and have been taking it for a while there is no way you can come off it without side effects, especially if you come off cold turkey.

I certainly hope your side effects are not to tough, and that you have a great trip.

brownie · Post by **brownie** » Wed Dec 07, 2011 6:37 pm

All,
Thanks for the response on going cold turkey off of prednisone. I was on 20mg and stopped it 8 days ago and started with 9mg of Budesonide same day. What kind of side effects will show up?
I've had some D but not excessive.

Thanks also for all the advice on the trip too. Imagine meeting a member of this group-how fun. You all are the best.
Brownie

Lesley · Post by **Lesley** » Wed Dec 07, 2011 7:16 pm

Brownie,

You weren't taking a high dose. In fact that's probably why it didn't help as much as it should have. It's also not a huge dose to come off. The best way would have been to do it over 2 weeks. I was on a high dose so it took me a couple of months, and the pain was excruciating.
I am glad you didn't have a bad reaction.

Lesley

Post by **tex** » Wed Dec 07, 2011 7:51 pm

Brownie,

I agree, at only 20 mg of prednisone, the Entocort should take up right where the prednisone left off. Sorry about the unnecessary alarm - I just assumed that you were taking a higher dose. If you were going to have any side effects, they would have showed up a week ago. Side effects of corticosteroid withdrawal are usually neurological, in the form of various aches and pains, mood issues, etc.

Tex

Stanz · Post by **Stanz** » Wed Dec 07, 2011 9:06 pm

You wouldn't be the first here to meet up with someone they met here. I hope you do meet up with someone, sometimes they become life long friends. I met 4 special women on a forum in 2004 and since then three of them, one from California, one from Toronto and one from NY have come and stayed here. One is like a sister, 3 are like daughters, I love them dearly and they have all added so much happiness to my life. I haven't met my "daughter" from Pennsylvania yet, but she's getting married next summer and I will probably go and meet her then.

I hope you won't have problems with going off the prednisone, it is certainly not something you ever want to take long-term.

Connie

Robin · Post by **Robin** » Wed Dec 07, 2011 9:22 pm

Welcome Brownie!

Your in the right place to get help and all your questioned answered. About 2 years ago, before I was diagnosed with MC i was on prednisone too. It was a very low dose, after being on it for over 6 months my doctor wanted me to stop immediately! He said it wouldn't be a problem because I was on such a low dose. Well listening to him because he was my doctor was stupid. I should have gone with my gut and my knowledge of medicine (I am a nurse). I had gotten the worse joint pains, headaches and mood swings. When I called him he told me they wont last long and I should take some Advil. After 3 weeks the symptoms did start to disappear. If I were you (and I am not) and this is only a suggestion, I would wean off of them. I would take 20mg every other day even if its just for a week. Again this is only my suggestion. As for Entocort I am on it. It does work but sometimes I feel like it gives me a sense of false security. I want to get my diet under control because after the new year I want to come off of it.

Welcome Again
All the best of Health and Happiness
Robin

brownie · Post by **brownie** » Thu Dec 08, 2011 5:47 am

Whew! Thanks all for the information and encouragement. I don't think I've had any serious side effects except I did get a monster headache one day briefly and DH will be glad to hear that he was right about my grumpiness being caused by meds.
So it's all about the diet and healing and getting the lab test done to see if other foods need to be avoided. Thanks again.

Gabes-Apg · Post by **Gabes-Apg** » Thu Dec 08, 2011 12:15 pm

Hi there Brownie, welcome to the group!

:greatwave:

I have been quite lucky and have met three people face to face that are part of this forum (all from different countries)

Bifcus16 - lives 2 states away, i met her and her DH when I travelled there for my work
Ant - lives in Hong Kong (8 hours flying time) i met him as I transitted through hong kong for a work trip
Joe - First came to Aus for work related visit, and then returned 8 months later to try and finalise a relocation here.

Also - I have spoken to Polly and Barbara on the phone. Barbara on the phone sounds 'exactly' the same as her posts on the forum.

Having friendships with people that 'get it' has been integral part of coming to terms with accepting this condition into your life,

Getting to the USA and trying duck bacon is a new addition to my bucket list,,,
(i only heard about duck bacon via this forum)

humbird753 · Post by **humbird753** » Sat Dec 10, 2011 11:20 am

Hi Brownie,

Welcome!

I am fairly new here (11/28/11), but want to share my experience with Pepto tablets. After my colonoscopy and diagnosis of MC, I was told to take up to 10 Pepto tablets for approximately 8 weeks. It was during that time that my D got worse. After the 8-week period of time, I was referred to a gastroenterologist specialist. I was not ready to try Entecort, so he told me to up my Pepto tablets to 12 to 15 per day to see what results I would get from that. NOT GOOD - D was up to 25 or more times a day!! This, of course, is only my experience. There may be others who can tolerate it better than I did.

For now, I am trying the gluten-free diet, and hope to get results from that.

There are a lot of great suggestions, recipes, and wisdom here. In time I am sure you will find what works for you.

Paula

Gloria · Post by **Gloria** » Sat Dec 10, 2011 8:25 pm

Hi Paula,

Nice picture!

Polly and I also were worse on Pepto Bismol, so you aren't alone. I took it for 2-3 days and realized it was making me feel a lot worse. I tried it again a week later and had the same results. I've never taken it again. As with any medication, there will always be a few people who can't tolerate it.

I hope diet-only works for you.

Gloria