Update (back on Entocort but ok)

[ant]

Many thanks everyone for your kind responses and good wishes. It is good to be back posting a bit.

Dear Granny,

It is good to hear your advocacy and be reminded of your positive experience on Entocort. And I certainly agree that Imodium makes one sleepy (even more than the exhaustion that come with a flare).

Dear Joe,

Thanks for the stats on Entocort and your experience about a reduction in aches and pains. Last time I was tapering off Entocort, it was only when I got to 3mg a day that the morning finger joint aching started.

I believe that when I first talked to my GI about treatments (a year and a half ago) he said 4 months of high dose pepto; and then if that did not work, three months of Entocort – with a taper off; and if that did not work, a transition to Mesalazine; and then if that did not work, Imuran. As you know I diverted from that path and stuck with diet and Entocort.
I am interested to see how you get on with Imuran. You have so much to deal with I am so impressed with how you cope. Hopefully your current flare is nothing to do with the switch and was because of a food slip up.

Dear Polly,

I agree with you. I should have fired the big gun a few days earlier……but of course was hoping against hope that pepto would end the flare. A lesson learned there. I believe (hope) you are right about my gut having already healed somewhat – I have been on the diet for a year and a half now so it should have!!! But, I have a theory that if we have high Anti-tissue Transglutaminase IgA (mine was 70 Units) it takes longer for healing to take place.

Anyway, I am on 6mg of Entocort now which is a good sign. But, I am going to take the tapering slowly.

How are you doing now?

Dear Ginny,

I guess my question would be is this another intolerance or we just have longer to go to heal?

That is indeed the question……..Sorry you, too, are experiencing difficulties after coming off Entocort. (Thank goodness we have it as an option if we need it).


Dear Linda,

Thanks for the positive vibes…..I will let my body tell me when next to taper down. Maybe I went too fast last time for my particular circumstances (but too slow for my GI )


Dear Kari,

I agree about the stress management. I will try not to be too hard on myself. How are you doing now?

Dear Rosie,

You have a great sign off quote from Thomas Edison......spot on – we have to not give up and keep trying.

Dear Joe,

Thanks for your prayers and such a comprehensive post on your history. It is encouraging for me to read and full of good sense on how I should go about this little setback.

Dear Tex,

That is a really useful set of reports on prednisolone and budesonide effects on BMD. Many thanks for spending the time to pull the information and commentary together.

You have given me a full answer to my main concern about going back onto Entocort. It is so good to review these data and helps me know better how to take decisions.

As a Brit, I am a fan of Churchill (whose mother like mine was born in America, which makes me even more of a fan). I still remember as a child watching his funeral.

I must have had that great speech at the back of my mind..... when I think of the History of WW2…..Britain......until the US joined us to drive back evil and win......stood alone against seemingly impossible odds….. I see a parallel with the few of us, alone, standing up against this cruel disease.

Dear Rich,

I see no problem reaching for the big guns when you need to. If only our doctors understood this. They would if they had our symptoms.

Absolutely! I hope you, too, get some improvement soon

Dear Mary Beth,

Well yes, I am still enjoying wine!! That better NOT be my next intolerance. Wine as an “immune suppressant”….. now we are talking.

However, I have heard some think it contributes to leaky gut? Hmmm

Dear Gloria,

Your on-going roller-coaster ride of trying to get off Entocort is what I first read on joining this board. So my eyes were wide open from the start about the realities and potential for setbacks. But, also your determined spirit was and is a great example.

I hope that your gut has made good healing progress and slowly, slowly you are getting closer to the time you can control though diet alone.

Best, Ant

[hoosier1]

Ant,

You are so thoughtful the way you responded, specifically, to everyone's responses. I don't know how you keep track of all of them. You are way ahead of me, buddy.

Hang in there. You have been an inspiration to me so you simply have to persevere :)

Rich

[ant]

Rich,

Actually I am not so organized in my responses. .....Cos.... JoAnn.... I called you 'Joe' when I thanked you .... "for your prayers and such a comprehensive post on your history.... etc."

I blame the "immune surprised" wine therapy!

Best, Ant

[Ginny]

Ant, I couldn't agree more......

Well yes, I am still enjoying wine!! That better NOT be my next intolerance

Although after discovering that I probably have Mast cell issues, I gave up wine but gin was acceptable. Not being able to eat a variety of food, I still would like to enjoy coffee and a glass of gin and perrier

GrannyH and Gloria and, even Dee at last report, are examples of people who are doing okay with extended use of Entocort. I tell my DH all the time...........I have to be able to function and I will keep using Entocort when needed and taper off until one day I might be totally successful.

Wishing you the very best and support your decisions. Ginny

[JoAnn]

Hi Ant, it sounds like you're back in the saddle again. I ate a sweet potato today, something I haven't tried in a year thinking I'd probably be fine. NOT! I ate it this morning and had D this evening from it. Now that it's out of my system, I'm fine. I just can't figure out why I can eat refried beans with tons of fiber but a sweet potato does me in. Maybe it's something else in it. I won't be having that for Thanksgiving. Hope you're feeling better and it's good to see your posts again, JoAnn

Ginny, I found that I was always a bit "wobbly" when I would reduce entocort and when I finally went off. I often resorted to immodium and pepto to get me through things. I really don't need to now, so just know it doesn't seem to be a smooth transition and there are times you just might need to go back to a higher dose of entocort. I think I tapered down a few times and then had to go back up as I experimented with getting off. Good luck, JoAnn

[Robbie]

Add me to the list of people wondering where you were. I'm so glad you're back!!!

[Gloria]

I ate a sweet potato today, something I haven't tried in a year thinking I'd probably be fine. NOT! I ate it this morning and had D this evening from it.

I don't understand why I can't eat sweet potatoes, either. About a month ago I bought some baby food carrots and sweet potatoes. I put just two tablespoons in my turkey soup, and had problems the next day. I thought it was the fiber, but Brussels sprouts and cauliflower both have fiber and I can eat them.

Gloria

[Kari]

Ant - the care you take with thoughtful responses to everyone is really touching - thanks. So glad you can have wine - had to give it up a few weeks ago - but, like Ginny, I have now discovered that I'm fine with Gin - last night I had a refreshing gin and tonic - yeah!!! Anyhow, to answer your question of how I'm doing now - in general, pretty good. However, I did manage to get glutened 4 days ago, and all my cockiness about how well I'm doing went right out the window - it's amazing how humbling this disease can be. So, I've been taking pepto to get back on track, and feel improvement for the first time this morning - we'll see how the day goes ......... I'm thinking of trying Immodium for these pesky flares ???

JoAnn and Gloria - I've had the same experience with yams - was so sure they would become one of my staples, but, alas, inexplicably bad reaction - go figure ?????

Ant - hope your recovery from your latest debacle continues to go well - I tend to also withdraw to my "private cave" when feeling bad - can't quite bring myself to post while in that dark place.

Warm regards,
Kari

[JoAnn]

I'm glad I'm not the only one perplexed about the sweet potato/yam thing. Any thoughts Tex on why it seems so problematic? JoAnn

[ant]

Dear Kari

Glad you can have G&T. I have just discovered a fun plan B if I have to give up wine.....

There is a little Thai restaurant around the corner from my home that has just opened (already trained on all my intolerances). They have a vodka cocktail with fresh lime, a peeled prawn, crushed lemon grass, galangal, kaffir lime leaves, mint and ice.... delicious !!

Best, ant

[Kari]

Sounds absolutely delightful - if I'm ever in HK, I'll have to join you for one of those :):):)!!!

[tex]

I'm glad I'm not the only one perplexed about the sweet potato/yam thing. Any thoughts Tex on why it seems so problematic?

I have no idea. I can see nothing in it's chemical or nutritional composition that should cause problems.

Tex

[Linda in BC]

Ditto on the yam thing for me. I had it with dinner two nights ago and was a bit "wobbly" as Joanne says, the next day. Better by the next one though, thank goodness. Weird.

Ater trying so long to control this basically just with diet, I sure am appreciating the "protective backup" that Entocort gives me. An "oops" on food that might have taken days to get over before, seems to correct itself in a day or so now.

Linda

[ant]

if I'm ever in HK, I'll have to join you for one of those :):):)!!!

Absolutely. If anyone visits Hong Kong, drinks and/or a GF, DF, SF meal is waiting.

Best, ant

[Polly]

I'll drink to that!

What is galangal?

Love,

Polly