scared about taking new meds

I've been on Lialda since I was diagnosed with UC 4 years ago. (I'm 27 year old, female) I started with 1 pill 2x a day then I had more diarrhea so they increased my dose to 2 pills 2x a day. Ever since then, I have been great! No flares, some occasional bloating but nothing bad at all. After 4 years of feeling great I got a flare up. It started out as just some nausea and a slight stomach ache so I thought it was a virus. Then I began have diarrhea, and having urgency to go. I was going about 16 times a day and having blood. I was weak. When I went to see my doctor he said that he didn't think the lialda was working anymore and he admitted me to the hospital because I lost 5 pounds and he wanted me on IV fluids and IV steroids to take down inflammation. Once there I talked to my doctor about biologics. Which I am very reluctant about. The fact that it suppresses the immune system scares me and so do the side effects. I asked my dr if I could have a flare up and still go back to Lialda but he said it was unlikely the lialda was still working. So he said I could try it by putting me on prednisone at home for 5 weeks, slowly weaning down to 0 pills while still taking my lialda and then if I still don't feel good I have to get a colonoscopy and if it's inflamed I'll have to take the biologics. I am very nervous, I'm afraid that I will be sick all the time taking these new meds but there doesn't seem to be many other options. Does anyone have any advice or opinions? I have been crying since I got home from the hospital, I am young and feel like I'll have a terrible quality of life later on since I'm only 27.

I'm most worried about the fact that it suppresses my immune system. I'm afraid I'll get sick all the time :-/

Haven't you been on any rectal meds? You should be taking 4 Lialda per day plus doing rectal meds too. I would personally try that first before jumping to biologics. By the way, Lialda is designed to take all at once, not twice daily. You may want to try that as well.

I agree 4 Lialda when flaring. After a while in remission, you can go down to two. I question that you were started at one. Nobody recommends that dose.

If the biologic of choice is Remicade, it is recommended to take it with an additional immune suppressant to avoid forming antibodies. SO, it might be worth trying just the immune suppressant before Remicade. The most common one is 6mp.

You can also discuss a longer pred taper. It is sometimes done. Or you could start with pred for quick action, than switch to Uceris (a less problematic sterroid) for the long taper.

Also, if there is urgency, a few months of steroid enemas or Rowasa enemas might be all that is needed.

The decision to go right to a biologic needs to be made case by case looking at how much inflammation and how much symptoms.

Good luck

Hi, I think I would want to try another 5-ASA with rectal Meds before committing to a stronger medication. Also remember that you do have a voice, and therefore you do not have to agree with everything your GI says, the decision is ultimately yours at the end of the day on what medication you are happy and comfortable taking.

Agree with Gary and Poppie: I wouldn't go to biologicals after one flare in four years. People flare for all kinds of reasons -hormones, stomach bug, food poisoning, eating a lot of something that your gut doesn't like - not because they're getting worse. Often, you can treat a flare and be back to the way you were for long periods of time.

I've had two major flares in four years but have gotten to 100% normal in-between. I eat anything, poop once a day, no urgency, scopes look good. And I'm learning more every day about what non-medication related things I can try to keep me in remission. I expect to go even longer between flares the next time.

Here's what I would do:

1). I question the judgement of any doctor that recommends biologics before trying rectal meds. Get hydrocortisone and mesalamine enemas and use them daily. The hydrocortisone enemas will help you get into remission (use for a few months) and the mesalamine enemas will keep you there (use daily or almost daily forever)

2) have a plan of action for the next flare. Within a week of having flare symptoms, get on hydrocortisone enemas and, if necessary, oral Pred. Treat it fast and with every option you have. I learned this the hard way. I ignored my first big flare and was hospitalized and had to take Pred for seven months. The second bad flare, I stared high doses of Pred, hydrocortisone enemas (for the first time), and increased my maintenance "drug" curcumin and I was off oral Pred in seven weeks. It's much easier to prevent a severe flare than to get out of one.

3) research "alternative" options to try along with your meds. Curcumin, resistant starch, and grape seed extract have helped me a lot. Others are helped with probiotics and diet changes. Do your research and try something. But be sure to start at very small doses and add only one thing at a time so you know what's working.

I tried Remicade at the insistence of my former GI. I really didn't want to but felt I was very sick and felt i had no other choice. I had an allergic reaction at the second infusion and I was SO relieved that I never had to do Remicade again. It sounds like you feel strongly against it so you should follow your instinct. Try rectals and a second opinion before you do the Remicade.

If you are having too many BMs a day they don't like to give rectal medications as they wont all be absorbed and they won't know how much you had
I was having a really bad flair and they didn't even bother giving me the enemas and foams till I stopped having 15-25 BMs a day
Good luck
Talk to your doc and make sure you have good communication
You can always ask for a second opinion but if your inflammatory markers are really high than biologics may be the best choice

Stay hydrated the best you can, as a bad flare can dehydrate you quick. My worst flare, I was going 20+ times a day, and I'd drink a small glass of water every time I pooped.

There's no harm in learning more about surgery and what it entails, however, I think there are a lot more medications you can try before it, should you choose to. Both stronger uc medications and surgery have risks, and benefits. Many of us have been through these tough decisions and it's certainly not easy (I know I was impatient, cursing my large intestine and wishing it gone, when I was last flaring as badly).

First meds, you've tried lialda, the first class of uc medications which are anti-inflammatory medications. You haven't tried either the second class of uc medications (immunosuppressive: imuran, 6mp, aza) or the third class biologics (remicade, simponi, humira, or entvyio). Many like to try all three classes of uc medications, and sometimes nearly all of those meds listed, before going the surgery route. It's frustrating, time consuming, and trial-and-error. Some choose surgery earlier in the process; personal preference. The goal is remission (1 or 2 nonurgent bms a day) throug medications.

Second surgery, the j-pouch is the standard go to for uc patients. A j-pouch involves 2-3 surgeries to complete based on patient health and surgeon discretion. Uc attacks only the large intestine, so it's removed in the first surgery and a temporary colostomy bag is given. The end of the small intestine is made into a pouch/reservoir (as part of surgery 1 or 2). The pouch is attached to the anus in the final surgery, and you poop as you do now. Multiple surgeries, recovery for each, and a period where your new j-pouch must adapt. In the end, you'll have 4-6 nonurgent bms a day. Visit j-pouch.org, the ostomies forum here on healingwell, learn what you can.

Know your options, do your research, talk with your gastroenterologist and choose what you think is best.

Hi there,

I had in remission 10 years and it flared up last year after a colonoscopy. I just used asacol during 6 months flare up and one month predisone but no help. After a sigmo back in February, My GI gave me mesalamine enema(Salofax) and said I needed to start Imuran. I read about Imuran and chosen not to start and give a try to alternative.
I have changed my diet completely.
No eating outside, coffee , any alcohol, any meat, raw fruit, no sugar,no bread
eating a lot of home made goat milk yogurt, cooked fruit, home made bread, buckwheat usually nad lot of vegies, all cooked, or steamed
since sigmo, I am using Mesalamine enema before bed., asacol 3x3
In 2 weeks blood in my bm disapeared and reduced to 2-3 bowel movements per day., diarrhea was gone in 3 weeks.
I did acupuncture as well twice a week for 4 weeks in March
since mid- march 1-2 bm everday, sometime I have pencil thick bm but usually better, I notice a little puss time to time. My GI said it is severe but it seems that I am doing fine for the moment.

I think mesalamine enema is helping me a lot along with the diet.
I understand that every one is different and there is no one solution for this.
My UC become 35cm long in during 6 months flare up. If I can not hold the remission with this way I may start using Imuran. We will see I guess.

Post Edited (ozzie_oz) : 6/4/2015 1:54:14 PM (GMT-6)