Entocort Update

grannyh · Post by **grannyh** » Wed Sep 06, 2006 5:18 am

In May I had a steroid OD when the doctor gave me the wrong pills to take when I hurt my back. I was in remission from the steroid OD for almost 4 months to the day.. then the D came back!

Going back to diapers after a 4 month reprieve was horrible!

I just started the entocort again yesterday.... 3 pills a day... have no idea how long it will take to kick in.

Lucy is right... be very careful with the prednisone.. it and entocort are both steroids. The steroid OD darn near killed me and I ended up with heart problems... both entocort and prednisone are steroids although you absorb very little from the entocort.

If you start feeling "weird" or your blood pressure shoots up contact your doctor right away.. !

grannyh

JJ · Post by JJ » Wed Sep 06, 2006 7:31 am

Wow...very scary...hope the Entocort kicks-in soon...take care...JJ

cludwig · Post by **cludwig** » Wed Sep 06, 2006 12:07 pm

Hi Everyone,

I am back from the San Juans....had a wonderful time. I'd like to just go there and disappear....leave reality behind. It is so ralaxing there...so peaceful....time just slows down.

Hi Grannyh,

I am so sorry to hear that the D is back. This disease is so frustrating and unpredictable. I am still having puffy poop...larger diameter ...so I assume that indicates that the entocort is calming the inflamation some...just not enough yet to get normans. I've been taking the 9mg for a week. Do you have any idea how your MC was triggered in the first place? The steroid OD sounds scary...definitely will be careful if I need to go the prednisone route.

Hi Bob,

I wish you good luck with the prednisone/entocort. I am glad you're working with a doctor on the dosing so you don't have problems like Grannyh. I am still not having any side effects on the medication and while it hasn't given me normans yet...I do seem to be feeling better more often.I am still hopeful for all of us. Please let me know how you are doing.

I met with my GP yesterday...explained my symptoms and that I continued to lose weight....his response was of course you are losing weight ....you're on the atkins diet. I don't know why I bother. He wants me to do a fat absorption test...where I think I have to ingest large amounts of fat. My stools never float but that didn't seem to matter to him. I see my GI in a couple of weeks...hopefully he'll be more helpful.

I keep praying for us all. I am so thankful to have you guys to share progress with. Take care.

Love,
Cristi

mle_ii · Post by **mle_ii** » Wed Sep 06, 2006 12:17 pm

cludwig wrote: I met with my GP yesterday...explained my symptoms and that I continued to lose weight....his response was of course you are losing weight ....you're on the atkins diet. I don't know why I bother.

LOL What a nut!

Hello! Dr, of course she's loosing weight because her body doesn't get a chance to absorbe everything due to digestive problems. Ugg!

grannyh · Post by **grannyh** » Wed Sep 06, 2006 12:25 pm

Christi,

I am pretty sure I know what triggered by colitis in the first place... I took 28 visicol pills before a colonoscopy... cleared out my colon and Norman took a hike for over three years!

I think traumatic shocks to the system can bring out something that has been more or less dormant.... just my guess. Especially since the steroid shock in put me in remission... the steroids wore off and left me sort of back at square one. But at least now I know what is wrong and had the entocort on hand to start taking it...

Now to see what happens next.....
grannyh

bobh · Post by **bobh** » Thu Sep 07, 2006 9:56 am

cludwig - Cristi wrote:Hi Bob, I wish you good luck with the prednisone/entocort. ... Please let me know how you are doing.

Yesterday was the first day of the protocol (short run of Prednisone, then pass the torch to Entocort after 8 days, as noted above). This is the first morning in many years that I woke up and didn't feel like a car wreck.

I have never taken a steroid before - and now I fully understand the "systemic" effect of the anti-inflammatory. My joints don't hurt, I don't ache all over. I am not fatigued. Like the pharmacist said, take it all early in the day or you will have trouble sleeping - and I still had trouble going to sleep because I wasn't fatigued. Very different.

Just wanted to pass this along - I have a lot of auto-immune problems in addition to the MC and it is real to me that this protocol should HALT the flare, and allow healing to take place. I have been awake for 2 hours and had only one BM, without urgency. It was oatmeal, not "pressurized paint", and my guts feel calm. This is after just one day.

I will do a separate post in a few weeks after doing the full protocol, but just wanted to comment that if the Entocort alone isn't halting the flair, you may want to ask about a short run of Prednisone.

starfire · Post by **starfire** » Thu Sep 07, 2006 10:04 am

Yes, that Prednisone is powerful stuff.

I'd advise doing whatever it took to make sure it is a SHORT course though.

I'd take Entocort again if I needed it but I hope I never have to take prednisone again.

Love, Shirley

thedell19 · Post by **thedell19** » Thu Sep 07, 2006 12:10 pm

I was on Entocort for a month before it started to kick in; and it kicked inthe day before my wedding which I was so happy about.

I really think the Entocort helped me heal and I was GF for the last 2 months on Entocort. I love Entocort and will go back on it in a heart beat if I needed to. But all in all it did a great job.

Polly · Post by **Polly** » Thu Sep 07, 2006 1:02 pm

Bob,

Just wanted to let you know how happy I am to hear about your improvement on steroids. WAHOO! HOORAY! THREE CHEERS! Hopefully it will be all downhill from here.

Isn't it a wonderful experience to be able to delay that mad dash to the toilet ?- even for a few extra seconds.

Love,

Polly

grannyh · Post by **grannyh** » Thu Sep 07, 2006 1:05 pm

I had immediate remission when on the dexpak (steroids) for my back.. the problem was the course of treatment was 13 days and by day 8 I was in trouble with my heart....

I am on day two starting back on entorcort.. no bloating and feeling a bit better...
grannyh

starfire · Post by **starfire** » Thu Sep 07, 2006 4:08 pm

I am sooooooo glad you have started feeling better grannyh. You sure have had some ups and downs. Hope its clear sailing for you now.

Love, Shirley

grannyh · Post by **grannyh** » Thu Sep 07, 2006 4:19 pm

NOTHING is ever clear sailing with CC..LOL But I hope I can get back to some kind of "normal":)
grannyh

JJ · Post by JJ » Fri Sep 08, 2006 8:16 am

Glad to hear things are starting to improve...hang in there.

JJ

bobh · Post by **bobh** » Fri Sep 08, 2006 12:19 pm

Polly wrote:Bob, Just wanted to let you know how happy I am to hear about your improvement on steroids. WAHOO!

Yeah, this is the 2nd morning since starting the short run on Prednisone, and I started having some dry farts last night, and again this morning. After 6 months of "Squirt City", a dry fart is a very welcome sign.

It's after 11am and I have only had one BM, currently no bowel distress or urgency, the raging proctitis "vanished".

I am just amazed at how fast the Prednisone worked, and am already winding down on it - towards the transition to Entocort. For years I was very, very reluctant to use meds. You folks have helped me make some educated decisions, and I appreciate it.

I am simply posting on this thread in case it helps others who are considering Entocort - the idea of a short burst of Prednisone first (to halt the flare)

cludwig · Post by **cludwig** » Fri Sep 08, 2006 12:50 pm

Thanks for the update Bob. So glad you are finding relief.
I am continueing with the 9mg Entocort and the diet...still with some improvement but not enough yet. I see my GI soon and will mention the Prednisone. I am also going to start Methimazole this weekend (can you believe it...I finally got the Dr. to agree to have it compounded without the lactose). 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. I'll let you know how it goes. Take care.

Love,
Cristi