Tough Choices

nerdhume · Post by **nerdhume** » Wed Nov 05, 2014 5:21 am

I have been building to a flare for a couple of weeks now. I have been under more stress than usual, but haven't eaten anything off my plan.
Finally back to WD about 12 times Monday and 4 more during the night.
My GI had told me to call him if I relapsed and we would discuss treatment. Yesterday I tried to call my GI every 15-30 minutes all day and the line was busy. I don't know if the phone was out of order or not.
Uceris worked very well for me before. I have taken 1 here and there when I have had a bad day. I was so miserable that I just went ahead and took one with lunch. Within 3-4 hours I was all better and full of energy. The energy being the plus side of it, the insomnia being the down side.
I will be working at church all day today with our ladies group, we have a lot to do. My plan is to go ahead and take another pill this morning. And try the GI again tomorrow because I don't have time today to do anything else.
I have read of others tapering the drug by taking one every other day, then every 3rd day. I may just do that and see how it works. I have an appointment Dec 9th anyway.
I really think the fact that Uceris worked so well and so fast might mean it does get into the blood stream and also that my problem might be allergic.
Anyone have any advice?

Post by **tex** » Wed Nov 05, 2014 10:08 am

Hi Theresa,

That's a heck of a note, and I hope that you can quickly nip this relapse in the bud. It sounds as though you're off to a good start with your treatment.

I notice that pollen counts have been winding down around here for at least 2 or 3 weeks now as the ragweeds die off. I'm not sure if that has been happening in East Texas also, but have you by any chance been reducing your antihistamine usage during the past few weeks?

Tex

Gabes-Apg · Post by **Gabes-Apg** » Wed Nov 05, 2014 10:27 am

Theresa,
Histamine is what came to my mind first, any different plants in bloom?
Any dental work? Had your hair dyed? Had contact with more chemicals recently?

The other things that comes to mind,
- a food/ingredient you thought was safe, is no longer safe.
- Or a supplement that maybe is a different batch, and has different inactive ingredients
- contamination in the kitchen

Hope you feel better today and the spaced dosage works.

nerdhume · Post by **nerdhume** » Thu Nov 06, 2014 5:19 am

Tex,
Our pollen counts have been down the last couple of weeks so I did reduce my dosage of antihistamines....could this be rebound? I am still taking Zyrtec in the morning and Benadryl at bedtime. I had been taking another Zyrtec in the afternoon if I felt like the first one had worn off.

Gabes,
We have had new carpet installed in the parish hall at church and I have been helping to get everything back in order. The carpet / glue smelled horrible.

Maybe this is just a perfect storm of allergies. I will skip the Uceris today and take an extra antihistamine.
Thanks for the good advice.

Post by **tex** » Thu Nov 06, 2014 10:32 am

Theresa wrote:Our pollen counts have been down the last couple of weeks so I did reduce my dosage of antihistamines....could this be rebound? I am still taking Zyrtec in the morning and Benadryl at bedtime. I had been taking another Zyrtec in the afternoon if I felt like the first one had worn off.

That was my initial thought — that it might be a rebound effect. But if you only reduced your dosage (rather than stopping it completely), that makes a rebound effect less likely. As you say though, it could be a combination of things.

Tex

UkuleleLady · Post by **UkuleleLady** » Thu Nov 06, 2014 4:14 pm

Hi Theresa,

so sorry to hear of your flare. And that you can't get in touch with your doc.

I have had two flares with multiple WD since achieving a good "remission" in March. (my remission is normal life, pain free, good energy but soft BM each day. Sometimes normal BM)

Anyway, each time I took 9mg Entocort for two days, 6mg for two days and 3mg for two days. This has NOT been cleared with my doctor. I basically treat an MC flare the way my allergist would treat me having an asthma attack, with a dose of steroids asap, then a taper. I have seen how my body reacts to inflammation and it is a self-perpetuating cycle sometimes if I don't knock it down to baseline.

Taking only one Entocort would just be 3mg and that probably wouldn't knock me out of a flare...I do not know the mg of Uceris but I think it's the same?

I recently had an asthma attack and waited too long to get on a steroid (Asmanex inhaler, localized steroid) and had to take a double dose for two weeks, not ideal. This WAS under my allergist's care and treatment recommendation.

Anyway, I hope you find your answer -- this is just what worked for me twice. And I have no idea how safe this is. I would ask my GI but we do not get along very well, and i haven't found a new one who isn't his partner yet. The GI community in Austin seems to be interrelated..

Nancy

Post by **tex** » Thu Nov 06, 2014 4:26 pm

Nancy wrote:Anyway, each time I took 9mg Entocort for two days, 6mg for two days and 3mg for two days. This has NOT been cleared with my doctor. I basically treat an MC flare the way my allergist would treat me having an asthma attack, with a dose of steroids asap, then a taper. I have seen how my body reacts to inflammation and it is a self-perpetuating cycle sometimes if I don't knock it down to baseline.

That makes a lot of sense to me, because it is indeed the way that corticosteroids work best.

Nancy wrote:I would ask my GI but we do not get along very well, and i haven't found a new one who isn't his partner yet. The GI community in Austin seems to be interrelated..

I get the impression that's a common problem in many areas of the country.

Tex

lisaw · Post by **lisaw** » Thu Nov 06, 2014 6:19 pm

Nancy:

That is an interesting approach, and really good to hear it has worked to get you back on track both times. I will definitely keep that in mind.

Lisa

nerdhume · Post by **nerdhume** » Fri Nov 07, 2014 5:12 am

Nancy,

Anyway, each time I took 9mg Entocort for two days, 6mg for two days and 3mg for two days. This has NOT been cleared with my doctor. I basically treat an MC flare the way my allergist would treat me having an asthma attack, with a dose of steroids asap, then a taper. I have seen how my body reacts to inflammation and it is a self-perpetuating cycle sometimes if I don't knock it down to baseline.

Taking only one Entocort would just be 3mg and that probably wouldn't knock me out of a flare...I do not know the mg of Uceris but I think it's the same?

That is what I thought! I wanted to get it under control before it caused serious inflammation and caused real problems!

Haven't even tried to get my GI again, he had previously wanted to put me on Humira and I am not ready to go there. He has acknowledged that diet has an effect.

DH sometimes has skin allergies and his Dr. gives him prednisone in a pack which has 6 pills the first day and then reducing one per day til gone. It is the only med that will help and, of course, has serious side effects.

Uceris is 9 mg and the pills are coated and designed not to dissolve until they get to the colon, so I can't cut them in half. I took one Tuesday and Wednesday, then skipped yesterday. I was OK yesterday, but will take one this morning and do every 2 days for a week.

I know there are others on Uceris, I will post my results with my taper.

Gabes-Apg · Post by **Gabes-Apg** » Fri Nov 07, 2014 7:05 pm

Theresa
I think the combo of the sleep patterns (as per the other thread) and the glue would be enough to cause inflammation. we are sensitive little souls arent we??!!

Albeit the reaction is an indicator that there is still some healing to happen, and with thanksgiving and christmas approaching be on guard for triggers etc.

hope the uceris every second day works out for you.

take care