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Posted 9/19/2013 5:39 PM (GMT 0)
Went better than I expected. He agreed to do everything I asked:

Switching Asacol HD to Lialda

Switching Bentyl to Levsin

After seeing how these med switches effect me we are going to try a moderate dose pred taper beginning at 20mgs for a week, 10mgs for a week, and then 5mgs for a week. Have never tried pred before for UC. That's it for the pred though. It either works or it doesn't. No more. Back in January of this year I took a Medrol dose pack for something else, which is 4mg pred tablets. You take 6 the first day and then cut by one pill per day until it is gone. Did wonders for my UC but it quickly returned shortly after the dose pack was finished, so, this prescription is a small step up from that. As I suspected, my doc is not a pred believer at all. He says it works great as long as you are on it but almost never keeps you in remission once tapered low or off. He rarely prescribes it for anyone. He is supposedly one of the better GI's in my area.

I was worried that he might want to do a colonoscopy but he didn't see the point as with no diarrhea or blood my colon is obviously doing better than my first colonoscopy 3 years ago. He would only do it to verify if my condition was worse, as a prestep to beginning the harsher drugs, which neither one of us feel I am in need of yet. He had mentioned Imuran before in the past so I'm glad he did not bring it up this time around as I would have shot it down anyway.

I am going to finish out my current prescriptions (which will happen very soon) before starting my new meds and continue taking the CCHerbal up to that point. I seem to do a little better on it so will re-evaluate when I make the med switch to see if I continue with it or not.

 

Posted 9/19/2013 5:44 PM (GMT 0)
I still think you should try rectal meds.

I know you've said in the past that your doc thinks your urgency and frequency problems are IBS. Well, I think that's a load of BS because the Medrol dose pack helped your UC. If the pred also helps your symptoms, then to me, that confirms that your problems are due to inflammation/UC, not IBS. And, as studies have shown time and time again, those who use rectal meds in conjunction with oral meds reach remission more quickly and stay in remission longer than those who only use oral meds.
Posted 9/19/2013 5:52 PM (GMT 0)
I actually agree with you, totally. To be honest, really honest, it didn't even occur to me this time around to ask him about rectals and he didn't bring it up either. I did make it a point to ask him last time around and he said what you remember. Funny thing is this time around he didn't mention one word about IBS although it is clearly listed as one of my diagnosis. We only talked about UC. Another appt in 6 months. Will have to reconsider bringing up the rectals next time around.
Posted 9/19/2013 5:56 PM (GMT 0)
Why not give him a call now and ask him for a script? I think that your pred treatment/taper is much, much more likely to be successful if you're also on mesalamine enemas. And don't just let him give you a couple of months...ask him to write it for nightly for at least six months. I'd use them nightly, too, until you've been symptom-free for a few weeks. Then you can start to taper.
Posted 9/19/2013 6:06 PM (GMT 0)
what she said.
Posted 9/19/2013 6:12 PM (GMT 0)
And guess what? I sometimes get rectal symptoms from IBS (no mucus, bleeding, pain or other UC findings) and hydrocortisone suppositories for a few days seem to me to help. My GI has no problem with this, doesn't make any comment on whether he agrees with my opinion, but says if they help me it's fine to use them short term.

That smart man knows I was living with UC before he was a gastroenterologist.
Posted 9/19/2013 6:18 PM (GMT 0)
I'm starting to finally click with my GI as our relationship got off to a slow start. Since I have previous experience with another autoimmune disease, and I realize that you have to self advocate, I am a difficult patient as I want to call the shots and have the doctor follow my lead and this took him aback at first with me being a new patient. I think he is getting more used to me having the knowledge to call my own shots. If I read him right, he will not be comfortable with me trying to change the game plan that we already layed out in his office and I don't want to appear to be irratic and all over the map. It is important to me to establish a rapport with him where we both feel comfortable with him being the doctor and me being an actively participating patient. I know you are right but my condition is much better than most UC'rs and I have the time to wait until next time around when we can again formulate a game plan together in an office visit, if needed. Maybe I'll get lucky and a new game plan won't be needed. I was going to ask him today about his opinion on Uceris and I forgot so that will have to wait until next time as well.
Posted 9/19/2013 6:21 PM (GMT 0)
I guess I just don't see the point in trying pred if you're also not on enemas.
Posted 9/19/2013 9:59 PM (GMT 0)
I would just call and say I forgot to bring up the enemas at my visit. Your pred doseage is also kind of low but I guess that is because its going to be such a quick thing. I can call and request things from my doctor in between appts, you should be able to also.
Posted 9/19/2013 10:35 PM (GMT 0)
so who is calling the shots ? apparently gary doesn't want to put things up his butt or he would tell the dr to give it to him -
Posted 9/19/2013 11:50 PM (GMT 0)
Hi Gary,
So glad your appt went well and you feel good about it. I hope you get great results. I also am a big believe in rectal meds as they have helped me more than anything else.

Pls keep us posted on how you are doing and good luck!
B
Posted 9/20/2013 6:02 AM (GMT 0)
Good luck Gary. Let us know how Lialda is wworking for you as I was thinking of trying it too.
Posted 9/20/2013 7:57 AM (GMT 0)
Good luck Gary.  Tell us how you get on with Lialda?  How many mg are you taking?

After my review with my GI in June, I am doing worse.  He put me on 40mg of Pred and changed me from Pentassa to Mezavant (same as Lialda I believe).  After the Pred finished, I am a lot less consistent and seem to be having a lot of mini flares. I think the Pred doesn't suit everyone, and seemed very toxic and upsetting to my body.  I also think the Mezavant is not doing as good job as the Pentassa.  Yes, the Mezavant is a convenient single dose, but I think the Pentassa covered my problem area better.

Anyway, I will tough it out on the Mezavant, and if no change, will ask to go back on Pentassa in December when my new script is due.

Good luck.. 

Posted 9/20/2013 12:14 PM (GMT 0)
I will be taking 3 Lialda in the mornings when I start, which is close to the amount I was taking with ASacol. I was going to finish my Asacol first, which has about 1 week left although, I have been thinking about starting it right away and if it didn't work out then I would still have some Asacol I could start on ASAP if the Lialda backfires. I am wavering back and forth on that idea since I still have refills on my Asacol available and could refill it same day or next anyway. I came up with the idea of switching because I have always thought Asacol was increasing my BM's and I noticed several on here recently who seemed to be doing better after making this switch.
Posted 9/21/2013 3:23 AM (GMT 0)
Gary, if the pred helps and then you get sicker again after the taper, I might ask for steroid enemas. Way fewer systemic effects, so in my experience you can take them for longer (tapering is easy too). Remicade at a double dose every 6 weeks PLUS 6MP wasn't getting me in remission, but the steroid enemas managed to knock down the inflammation enough to get me there.

I haaaaaaate rectal meds, so I'm always slightly astounded that I recommend them so often ...

Anyway, hope Lialda works for you!!
Posted 9/21/2013 4:40 AM (GMT 0)
I've been thinking about what the others said about Mesalamine enemas and it occurred to me that this makes sense if you are treating with both oral and rectal Mesalamines and no pred but if the pred works well then it will work well along the whole colon and rectal Mesalamine and probably oral too would not actually be needed if the pred is working well. After the pred was tapered low or off then you would need to do something to remain in remission. Right now I am hoping that the Lialda will be enough.

I had originally planned on asking the doc for a Uceris prescription to start as soon as the pred was tapered very low or off but forgot about asking him about that too. It would seem to me that something would have to be done after the two months of Uceris is up. If the Uceris actually worked I would think you should do one or two days a week of Uceris forever but that's not what the docs do right now. Lots of different possibilities. Since I do way better than most I have more leeway and time to try things out and not be in such a panic that I need complete remission tomorrow.

As a matter of fact the CCHerbal I have been taking has actually done the best for me of anything I have done in a long time. I'm hoping I keep on improving with that. I have a week of my old meds left (Asacol & Bentyl) and I'm not going to start any of these new meds, including prednisone, until they are used up first. I may actually change my planned gameplan if the CCHerbal continues doing this well, including maybe postponing the pred. I promise that if needed then rectals of different kinds will be considered at some time in the future but not only I am not crazy about doing them short term but I'm definitely not crazy about doing them long term at all. Like I said, I actually do better than most. The only symptoms I have are frequency and urgency. I have never been in the hospital for UC, never had any pains, weight loss, or anemia and have had solid stools with no blood for probably two years.
Posted 9/21/2013 4:57 AM (GMT 0)
" The only symptoms I have are frequency and urgency. I have never been in the hospital for UC, never had any pains, weight loss, or anemia and have had solid stools with no blood for probably two years."

I think they have a word for that ................ ibs -

Posted 9/21/2013 4:59 AM (GMT 0)
I meant to mention earlier that my first GI put me on Levsin at one point. I've never taken Bentyl, but Levsin never helped me and cost $45 even with insurance. I wish it had helped, since urgency was really my least favorite symptom. Let us know if it helps you!
Posted 9/21/2013 1:34 PM (GMT 0)
MY GI first prescribed generic Robinul but it did nothing for me and gave me side effects. Took nothing for a while and then he prescribed the Bentyl. I never saw much difference with Bentyl either but it did not give me side effects. I stopped the Bentyl somewhat recently because I didn't think it was doing anything but I got slightly worse so I resumed. Still don't think it does much of anything. After reading a few people on here recently who said Levsin worked better for them than Bentyl I decided to ask for a switch. I will begin taking it after the Bentyl runs out in a few days and will let you know how it goes. I'm not very confident in any of these drugs as so far none of them has made a noticeable difference. By the way, my doc actually prescribed a generic for Levsin so there is a generic version available.
Posted 9/21/2013 3:48 PM (GMT 0)
I think it was a generic that I was on, too. Levsin isn't FDA approved, so not all insurance companies cover it. When they do cover it, they don't usually cover it to the extent that they cover other meds.
Posted 9/25/2013 6:17 PM (GMT 0)
@gary thanks for sharing your full update with us. I hope you are able to find a way to totall end your urgency issues and am glad to read CCHerbal has helped too. One other question I have for you which I can't remember if we covered on the other forum, have you ever tried some diet changes to see if that helps?
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