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Posted 10/9/2013 4:19 PM (GMT 0)
CC Herbal worked great for me abt 3wks, then had Flare of IBS started Fri evening, kept get worse, D, cramping & nausea, soo I finally started the Pred yesterday, that my Dr. Had prescribed back in Aug and I was resisting. First dose stopped my cramping & nausea, have a lotta gas tho & bloated...my husband left this morning for rest of wk, Lucky for him!! I was able to get off the sofa & do more yesterday, but heating pad on my tummy is still my Best Friend!
Giving Lialda one more shot also, if this doesn't work may be changing GI's, wish there was list of those specializing in UC.
Any ideas to make my Pred Trip any easier, would be greatly appreciated!!
Posted 10/9/2013 4:34 PM (GMT 0)
Try to eat as low salt as possible. Choose foods low in sodium and don't add salt to anything. Eat bananas to keep up your potassium levels from falling, which can cause excruciating muscle cramps. I don't think changing GI's will help anything. A UC specialist doesn't have any different magic pills than anyone else. They all get their info from the same medical book. Sorry the CC didn't work for you. I'm still on it along with recently starting pred myself but I have not had the bad flare that both you and plumsmom report. I only started the pred for the first time hoping to kick myself into my first remission. Can't say if the CC is helping or not but it is not hurting.
Posted 10/9/2013 5:08 PM (GMT 0)
I am trying to hard to stay away from bananas because that gave me such a scare while i was at the hospital, such indigestion, it was horrible..any other ideas for potassium? Someone mentioned almond butter and i have had a couple of little bagels with less than half a spoon of that just to see, but there is nothing on the label about potassium, i mean, there is, but no specific amount. Anyone know anything very safe with potassium?
Thanks.
Posted 10/9/2013 5:14 PM (GMT 0)
Just google potassium and foods and a bunch of things should pop up. Potassium supplements can be very dangerous though so stay away from them.
Posted 10/9/2013 6:45 PM (GMT 0)
@julie Down on prednisone road with me and @gary ... good to read that is helping you a bit already too. Did you stop the CCherbal? I kept at it for a few days then decided yesterday to quick three of the alternative herbs I was taking til I find more stabilization: CCherbal, triphala and the inflammi-GI. The pred worked for me within a day I had such relief. I'm really now focused on what my new GI will say on Tues and know I'm anxious to find a better long term solution to taper off as there are a lot of bad side effects for long term use. I am thankful for having the pred though, I just couldn't survive without the relief and it was nearly instant help to what really battling. Keep us updated on all of your progress. Today and yesterday were very good days for me, I'm feeling very optimistic and just being very careful about what I'm eating and also managing stress and just staying positive and happy as much as possible. I have been counting my blessings for all the amazing wonderful things my body has done for me, like my baby, and not focus on any negative and the fruit-loopy positive thinking has really lifted my spirits, plus the fact I'm not seeing so much blood anymore in the bathroom. That was just a true horror. Sending healing thoughts out to all of you!
Posted 10/9/2013 8:28 PM (GMT 0)
There are some great low salt recipies on the Davita kidney website, I'm going to make some soy-less soy sauce, hope it's good! I also read a book I think it was called 'Coping with Prednisone' it helped me to not feel so crazy! Btw, I'm 11 weeks pregnant w/twins and prednisone made me way more emotional!

Trader Joe's is great for low sodium foods, they have a low sodium tomato soup w/90mg per cup. I add chili flakes to make it spicy. Hope you are better soon!
Posted 10/9/2013 8:31 PM (GMT 0)
@gary, Thanks, I've read on here, slightly green bananas are best, right? Will watch the salt too, I do like it!

@plumsmom, yep, I'm on this path with Y'all, bad as I hated to start it, was afraid I was gonna continue downhill. I'm off the CC for now, more pills than I wanna deal with now....like you I'm holding on to it and hope when I'm more stable, can try it again.
Kinda had a ass chewing from my Dr.'s nurse this morning, told me since I had been off the Lialda, it could've gotten serious fast, that Meds couldn't stop. Scheduled another appt with GI for 29th, I told her so he can give me ass chewing too!! Will actually be starting 10 mg Pred that day... I'm making a list of questions for him, feel I'm a little more educated since reading so much on this forum!! He just said my UC is Universal, wanna know exactly where it is!
Posted 10/9/2013 8:52 PM (GMT 0)
@Beth, Congrats on your Twins! Amazing to me how many Brave souls are on this site!! Thanks for pointers too! Warned my husband last nite, I read Pred could make me more emotional, he said, More emotional!! mostly you've been pissed off! :) May need to double up on Lexapro!
He likes his projects tho, so I'm sure he can find an escape!!
Posted 10/9/2013 9:39 PM (GMT 0)
gary - earlier in this post you mentioned to avoid salts, I was just wondering the reasoning behind that. Thanks.

Mike
Posted 10/9/2013 10:25 PM (GMT 0)
Prednisone causes water retention. Salt causes water retention. It's like a double whammy. This can sometimes lead to blood pressure issues. Most people have to really watch their weight while on prednisone (except maybe for those who lost a lot due to their UC). It will help with the blood pressure and weight and I believe it can mitigate moonface and other side effects, at least to small degree anyway. Nothing will totally eliminate the onslaught of prednisone side effects but if you eat a normal American salt diet this just multiplies your issues.
Posted 10/9/2013 10:29 PM (GMT 0)
Got it, thanks for the info.
Posted 10/9/2013 10:58 PM (GMT 0)
Mike, fyi, i have not changed my salt intake at all on prednisone. Still salt my foods liberally and havent had water retention or blood pressure issues. Quite the opposite- i have extremely low blood pressure. I blame it on prednisone.
Posted 10/9/2013 11:00 PM (GMT 0)
I haven't been watching my salt intake either, but its good to know if for some reason down the road I start running into a problem, I can try and lower the salt intake to see if it helps.
Posted 10/10/2013 1:08 PM (GMT 0)
@Beth, @MikeSoCal, I'm abt as concerned abt Lialda as Pred, could you tell me more abt your problems with it, how long u were on it, etc. I std on 3, he increased it to 4, didn't stop my B, only symptom I had at time, maybe it's helping with inflamation...he seems determined to keep me on it...I've been concerned abt it affecting my kidneys, had few twinges in that area after being on it 6mos. Have night sweats with it a lot and only slept @ 4 1/2 hrs last nite, prob due to Pred. Thought I would sleep good, cause actually did little housework, worked in yard a little, walked & no nap yesterday!
Posted 10/10/2013 2:23 PM (GMT 0)
Julie - Issues I had with Lialda or Prednisone?
Posted 10/10/2013 2:25 PM (GMT 0)
Lialda
Posted 10/10/2013 2:36 PM (GMT 0)
After my first hospital stay I wasn't getting better, I was currently taking AsacolHD for my anti-inflammatory and they decided it wasn't working good/fast enough so they gave me Lialda to try. The next few days I began deteriorating very quickly. Terrible joint/muscle/stomach/intestinal pain, it was a significant increase, couldn't get out of bed by the 3rd day. BMs got worse, more often and more painful. They told me to go back to the AsacolHD. I ended up back in the hospital anyways, but have just continued taking Asacol (except for about 8 days in the hospital when they stopped carrying Asacol and were giving me Delzicol) and never had those symptoms again.

I believe your sleep issues are with the Pred, I suffer the same exact issues.

Posted 10/10/2013 3:13 PM (GMT 0)
have u ever used rowasa or hydrocortisone? worked for me
Posted 10/10/2013 7:14 PM (GMT 0)
@MikeSoCal, Thanks for ur response. Sorry u have Severe UC, glad you've found Meds that are working for you.

Yes, just my 3rd day on Pred, but have had more energy and appetite than I've had in awhile! Not sure when the Bad stuff will hit, just have to take it one day at a time & get thru it!
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