1 week update

suzieq · Post by **suzieq** » Sun Jun 26, 2011 12:19 pm

Hi all,

I have been on the Entocort for just over 1 week now, 4 days at 9 mg and 4 days at 6 mg. Today I noticed an itchy/hive looking rash by both of my ears. Is this a side effect of the Entocort? I never get hives.

I have been slowly going gluten free, not quite there yet. Last night we attended a wedding, needless to say it wasn't a gluten free menu. I ate what was served, my tummy felt terrible last night and I was expecting the worse this morning. To my surprise, I had a normal stool for once. Is that the entocort kicking in? I have eliminated eggs, as I was previously tested for allergys and I was told I was allergic to egg whites. The other allergys were seasonal. I don't remember what other foods might have been tested but that was the only one I was informed about.

I have been reading through the website. I read about NSIDS. I had been taking Advil for years for whatever aches and pains I have, I have now discontinued it, now I'm taking Tylenol instead. I also read about the osteoporosis medications. I took Fosamax for 7 years and had Reclast infusions the past two years. To read that both of these contribute to MC was an eye opener. I also read about TMJ being associated to gluten sensitivity. I was diagnosed with TMJ back in the 90's, had 2 episodes about two years ago where I could barely open my mouth to speak or eat and it hurt so bad. I only have minor problems lately with the TMJ.

I am thinking about going through with being tested by Enterolab for gluten, soy, diary and eggs. I haven't decided if I will get the gene testing. I think I should because my 26 year old daughter has some tummy issues. When she was a baby she had to have soy formula. She notices when she has something like a slice of pizza, she pays for it later. Sometimes she doesn't know what sets it off, like mother, like daughter.

Thanks for everything, the support and information are great.

Susanne

Post by **tex** » Sun Jun 26, 2011 1:09 pm

Hi Suzanne,

Good for you for taking the time to read all that information. Knowledge is power in any situation, but it's even more important when it comes to dealing with this disease, because of the fact that we have to take an active role in our own treatment, if we hope to achieve remission, and get our life back. Many members begin to see some benefits from Entocort within about a week, so yes, it might be beginning to help.

Skin problems such as a rash, are often associated with MC/gluten-sensitivity, and/or mast cell issues. If it's caused by Entocort, that's not a good sign, because it would be an indication that you may be allergic to it, which would open the door to the possibility of an anaphylactic reaction, if the allergy worsens. Keep an eye out for associated symptoms, such as breathing problems, tachycardia, (elevated heart rate), etc., and if they should appear, stop taking the Entocort immediately. Hopefully, the rash is just a coincidence, and it was caused by something else.

Concerning drug-induced MC, remember that each of those drugs certainly don't cause MC for everyone here - there's just an increased risk of developing the disease, for someone taking any of those drugs. NSAIDs are such a common trigger for the disease, though, that even most GI specialists are well aware of the connection. It would seem logical, I suppose, to assume that the more of those drugs that someone takes, the higher the odds would be for developing the disease. Usually, MC is triggered after long-term use, but occasionally the disease may be triggered after one of the suspect drugs is taken for only a few weeks. Obviously, some individuals are much more vulnerable/susceptible than others, to the effects of certain drugs.

Half of your daughter's genes came from you, of course, but if you want to see exactly which genes she might have, that's easy to do, because the test is very unobtrusive. All it requires is a simple cheek swab, (just rub a cotton swab inside the cheeks), to get a DNA sample for the test, air dry it, drop it in an envelope, and send it to Enterolab. There are several other labs that do the DNA testing, but Enterolab has by far the lowest cost, (about half the cost of the Promethius Labs test, the last time I checked).

Thanks for the update, and I hope that the Entocort is indeed beginning to work.

Tex

Joefnh · Post by **Joefnh** » Sun Jun 26, 2011 7:20 pm

Hi Suanne and thanks for the update. Certainly keep an eye on that rash, as Tex pointed out if that is an allergic reaction to the entocort, it can turn into anaphylaxis if it worsens. If yiu notice any other symptoms related to breathing or even a sore throat call your doctor right away.

That's great though that you were able to a handle on the D fairly quickly

Joe

Sheila · Post by **Sheila** » Mon Jun 27, 2011 6:38 am

Hi Susanne
I'm following your posts with interest. I'm still on Asacol which is not working. My GI wants to try the asacol for another couple of weeks. I'm not happy about it. I started GF a week ago and still have D although it hasn't been as bad the past 2 days. I have stopped and started Celebrex a few times. Celebrex works wonders on my arthritis pain but it probably exacerbates the CC. I'm off it for now. I am waiting for results from Entero Lab and I did request the gene testing. My youngest son was allergic from the time he was an infant and was put on soy milk back then. He is pretty private and had not mentioned the problems he was having with D until I told him what was happening in my life. He is going 8-10 times a day and primarily D and always right after he eats. I also have a 4 year old grandson who quite enjoys his "farts" but I think he probably has food allergies, too. My mother had CC and passed it to me and I guess I've done the same to my children. I've asked Entero Lab to try to find my Mom's lab results so I can compare them to mine. It would certainly be interesting. Good luck with your entocort and GF diet. It is just awful to pass up food you love but worth it in the "end".
Sheila

MaggieRedwings · Post by **MaggieRedwings** » Tue Jun 28, 2011 4:47 am

Thanks for the update Susanne and do keep an eye on the rash. It is different roads for most of us to good health but it will come. I can attest to that. Think I set the record for the longest time to remission.

Maggie

Sheila · Post by **Sheila** » Tue Jun 28, 2011 6:20 am

Maggie, how long did it take you to get into remission? The fact that you did finally go into remission is good news but I really want to know how long it took you to get there. Do you have any tips that would help others get to remission more quickly?

This flare is really miserable and nothing I do seems to change anything. I'm hoping the Entocort will be a magic bullet, calm down my gut and give the GF diet a chance to do its work. If only my doc would prescribe Entocort! :-( He insists on a trial of asacol which is not helping at all. My husband is having surgery next Thursday and I need to be able to be there for him. Lately, the immodium takes more time to kick in and that is scary.

Sheila

PS Early this a.m. a black crowned night heron was looking for lizards in the grass. He's a beauty!

suzieq · Post by **suzieq** » Tue Jun 28, 2011 7:26 am

Hi all,

It has been three good mornings for me, 11 days of Entocort. I had D (2-4 x's a day) every day from December to mid February, then a break for some unknown reason, and it started again mid March until it stopped just three days ago. I'm hoping that I have turned the corner.

I called the Dr. about the rash, he doesn't feel it is related to the Entocort. The rash is no better or worse for that matter, it is just there. I don't know what else it could be from.

Still working on going totally gluten free and will be ordering the Enterolab test today.

Sheila, when do you expect your lab results back? I wish you luck when your husband has surgery. Maybe take alot of Immodium? That's what I did for a 12 hr. road trip recently.

Be well,
Susanne

Post by **tex** » Tue Jun 28, 2011 7:43 am

"Susanne"I called the Dr. about the rash, he doesn't feel it is related to the Entocort.

He may well be correct, but that seems to be their default response, unfortunately. I've found that doctors are almost never willing to admit that a specific side effect could be connected with a drug they have prescribed, unless the response is life-threatening, or very serious, so that they can't afford to blow it off. I've even had doctors warn me, when they prescribe a drug, that it can cause certain side effects, (which they specifically named), and yet, when I showed up with one or more of the side effects, I got the same response that you did - they didn't feel that the side effects were caused by the drug they prescribed.

I'm guessing that's just their convoluted way of trying to convince us to continue taking the drug, despite minor side effects, but frankly, I'd rather hear the truth.

Tex

Sheila · Post by **Sheila** » Tue Jun 28, 2011 10:36 am

I sent my Entero lab stuff back yesterday. You have to freeze the stool specimens and then can only mail them on a Monday or Tuesday. I ran out of time and had to wait until yesterday to send both samples. I expect to hear within 3 weeks. In one way, I can't wait to find out the results and yet I'm terrified. I can deal with gluten free but when intolerances pile up it makes life and eating difficult. I'm also hypoglycemic and need to eat several small meals a day or I don't feel well. My husband thinks I have a tape worm. ;=)

I took 11 immodium one day in February while my husband and I were at a conference of his. I sat outside the ladies room of the hotel and just ran back and forth until it was time to go home. Fortunately, by that time the D had pretty much run out of steam. I had to take immodium about 2 1/2 hours ago and I can already feel the gurgling starting. Boy am I tired of this!! It's been going on since after Christmas with only a few short breaks of normal in between.

I'm glad you are feeling better and not having any D. I look forward to that day. Hallelujah!!!

Sheila

MaggieRedwings · Post by **MaggieRedwings** » Tue Jun 28, 2011 11:21 am

Hi Sheila,

Please do not let me be a measuring stick for remission! It took me over 10 years with faithful diet. I was a vegan for over 30 years and was very heavy into grain and soy prior to getting CC. Therefore, we have discussed my slow healing her over the years and it seems that my gut was just very ravished by the diet and could have resulted in a harder road to remission. I also had trouble with drugs described along the way and went to diet alone. Much time in sorting out the diet, etc.

I knew it would always come but just had to stay determined. Not really good tips for me to give anyone.

A BCNH is such a gorgeous bird.

Love, Maggie

Sheila · Post by **Sheila** » Tue Jun 28, 2011 1:16 pm

Just heard from my GI doc and he's calling in the prescription for Entocort. :-))) I'm hoping this will be the beginning of the end of endless D. I know the diet is the really hard work but if there is some respite from the D, it is worth the effort.

Sheila

Gloria · Post by **Gloria** » Tue Jun 28, 2011 5:22 pm

Great news, Sheila! I hope Entocort does the trick for you.

Suzanne - Yea! Entocort sounds like it's finally working. Now you can focus on diet and have a life again. I agree with Tex. Docs never want to admit that something they prescribed is causing you problems. My PCP prescribed several types of antibiotics which gave me a rash, but denied that the antibiotic was the cause.

Gloria