flaring, need advice (prednisone. Lialda. Remicade)

Need advice…

Been flaring for 3 full months now.
(immense urgency, some blood periodically, cramps/pain, loose stools, frequent trips to bathroom- sometimes with nothing coming out,…)

First month tried to treat myself by using Rowasa Enemeas and Canasa suppositories.
Helped for awhile, then not as much.

Couldn’t get in to see GI Dr, therefore saw primary care Dr. Got Primary Dr to prescribe prednisone. Also, asked for him to submit prescription for more Rowasa enemas and canasa suppositories. Insurance denied the Rowasa and Canasa; not covered. (Guess, I had received under previous ins)
Prednsione used to work like magic for me. This time not so much. The first few weeks (40mg) it seemed to work ok. Then I dropped myself down to 30mg, thinking I was almost there. Then started taking steps backwards.

Finally got in to see GI Dr. He instructed me to stay at 30mg prednisone for at least a month, and once I am completely out of flare, stay on the 30mg pred for a lil while before tapering. He also prescribed Lialda (4/day). This was denied by ins. It took about 3 weeks for the Dr to submit a pre-auth form to Ins, and once they did ins approved. I have now been on the Lialda for a week. Not showing any improvement as of yet.

So currently on 30mg prednisone and Lialda 4/day.
Remicade (every 6 weeks)

Diet currently during flare consists of chicken, bananas, rice, Think Thin protein bars, and some g-free chips (I know this isn’t great; but I know isn’t causing flare or making it worse)

I’m hoping to get GI Dr to submit auth to ins to approve the Rowasa enemas and Canasa suppositories to add to the regimen and perhaps heal things better/quicker.

Any suggestions on where to go from here … primarily to get out of current flare;
Once I am out of flare I need to examine what next options are to keep flares at bay.

Thank you in advance.
Keep fighting.

Hi SurferChick, sorry to hear you are having such a hard time right now. I was flaring for about 6-8 months (it's still hard for me to tell when exactly I'm having one) with symptoms very similar to yours. During the worst weeks the pain was so bad I had to stay home in bed with a heated pad on my stomach/back.

It's weird that Rowasa was denied, as it usually comes in generic when I get it. It may be worth calling and having your insurance research alternatives.

The way I was able to get better was through 4 Lialda/day and Uceris for 5 months, and eating very, healthy simple foods. The Lialda alone was not effective enough, but adding some Rowasa seemed to do it. I also took VSL and turmeric.

During the worst weeks I would go on a juice diet and make a big container of carrot/apple/celery juice for the day. I'd also eat some small amounts (a few bites) of hummus and greek yogurt. This worked wonders for giving my insides time to rest (though others say juice bothered them). Eventually I started adding in smoothies and noodle soups and small salads and steamed veggies. Sauteed spinach and salmon were also good. I did that and juicing for about 3 months, slowly adding more and more types of foods (but all very healthy). I see that you already have some diet restrictions, but perhaps you could try your own version of this?

I also did my best to rest as much as possible and avoid stress. I am an active person, but learned to enjoy watching movies and reading books in bed.

I hope that you can find some relief soon!

parallelograms said...
Hi SurferChick, sorry to hear you are having such a hard time right now. I was flaring for about 6-8 months (it's still hard for me to tell when exactly I'm having one) with symptoms very similar to yours. During the worst weeks the pain was so bad I had to stay home in bed with a heated pad on my stomach/back.

It's weird that Rowasa was denied, as it usually comes in generic when I get it. It may be worth calling and having your insurance research alternatives.

The way I was able to get better was through 4 Lialda/day and Uceris for 5 months, and eating very, healthy simple foods. The Lialda alone was not effective enough, but adding some Rowasa seemed to do it. I also took VSL and turmeric.

During the worst weeks I would go on a juice diet and make a big container of carrot/apple/celery juice for the day. I'd also eat some small amounts (a few bites) of hummus and greek yogurt. This worked wonders for giving my insides time to rest (though others say juice bothered them). Eventually I started adding in smoothies and noodle soups and small salads and steamed veggies. Sauteed spinach and salmon were also good. I did that and juicing for about 3 months, slowly adding more and more types of foods (but all very healthy). I see that you already have some diet restrictions, but perhaps you could try your own version of this?

I also did my best to rest as much as possible and avoid stress. I am an active person, but learned to enjoy watching movies and reading books in bed.

I hope that you can find some relief soon!

Flaring sucks. I wish I could stay home with my heating pad. I use it every night.

Yes. I have been dealing with a lot of issues right now in regards to being able to get my meds approved thru ins and having the dr submit authorization to get ins to approve. Soooo FRUSTRATING, as I am getting WORSE, every day.

I have now been on Lialda 4/day for a week, but see your note that Lialda alone wasn’t enough. I am hoping I may find similar success once I can get the Rowasa approved, and in my hands to start.

Is Uceris, like prednisone?

Due to my restrictions I would not be able to try your juice idea, but thanks for suggestion.

I also avoid stress and am an active person, but have had a hard time adjusting to sedentary life. I’m used to working out 5-7days/week. So hard.