NEED YOUR GUIDANCE!

Hi, everyone:

Just discovered this board and I'm eager to join, talk and share stories – good and bad. 1.5 years ago, i was diagnosed with Indeterminate Colitis, which, I'm told, is when you have characteristics of both UC and Chrohn's. After being on Asacol (still), Courtenema (going off) and 6MP (going off), things are only getting worse. Now, I'm due to have another scope on Monday to determine whether things have changed or if my inflammation is still localized. My doctor is suggesting that I go on Prednisone as a short-term fix. I'm worried about this. It seems that the drugs I'll now be getting into – including the 6MP, which didn't work and was starting to affect my liver – are more serious and come with a lot of potential scary side effects, Prednisone included.

So, I guess, my questions are this: What's your experience with Prednisone? And what is your experience with the heavy hitters like Remicade, Imuran and Humira? Also, have any of you tried any alternative treatments and, if so, what is your POV on these?

I view the next week or two as pivotal in terms of determining where all this will take me in the long term. And I'm very concerned about the potential long term problems associated with some of these more serious drugs.

Any thoughts for me?

Now I know everyone has their own reactions on Prednisone good and bad. However, my experience was bad. I had every side effect and then some. All I did was cry the whole time. I was depressed. I remember being at work--and I'm a cashier--and I would stand there doing orders and cry--I told customers that it was my meds and not to worry. Embarassing! Moonface, hair growth..and loss. Gained 30lb in 2 weeks--AND then the large appetite side effect kicked in.

The WORST part of pred for me was coming off of it. My depression got much worse. I couldn't sleep at all--I was prescibed sleeping pills. All they did was relax my body while my brain whizzed away wide awake (of course I'd still be crying too). I started at 40mg. I started to taper and when I got to 35mg I got a violent shake in my leg. NONSTOP shake. It shook for about 4 weeks as I eased off my pred. Drug addict much?! By the second week of shaking I took sick leave from work. By this point not only did my leg constantly shake, it HURT. And what did the doctors say??!! "Are you really doing that?? STOP SHAKING YOUR LEG" Oh my God!! ANNNNYWAY, by the end of my taper my leg stopped shaking.

This was almost 2 years ago. I can't work full time anymore because I can't stand for long periods of time. Pred messed me up. In the long run it didn't even really work. The ONLY circumstance that I would EVER take pred again is if something very bad happended and it was the only way to save my life.

Like I said though, everyone has different experiences, so I don't want to scare you. I haven't talked to anyone else who's had the same experience.

Luckily I haven't had Remicade yet. I still have a few more med options before I get hardcore. As for Imuran, I've tried it 3 or 4 times...it makes my stomach hurt. GI doesn't believe me though 'cause he's always trying to put me on it.

Well I will start with the Prednisone. I took it for the 1st time about 7 years ago. I don't remember having too many problems back then, my main problem was that every time I would taper down, I would get a lot worse and it seemed like the GI kept upping it instead of lowering it. I also had the moonface. I didn't gain a ton of weight and don't remember problems sleeping. I was emotionally a wreck with depression. I ended up talking it again for 2 weeks this past December. Totally different side effects! I was ANGRY, all the time! And hungry, ripping through the cabinets day and night. Then I started having horrible nightmares and I felt awake the whole night! I was able to do the taper sucessfully, what a relief.

Onto Remicade... It only worked REALLY well for me for a few months. I used to feel great after the infusions, more energy, able to eat more foods I usually can't, and no more D. After having my dose increased to see if I could get into remission, I started having a lot of fatigue and intense joint pain. Last infusion I got itchy all over and had severe calf pain for 15 hours straight. I still am not certain the problems I had were from the Remicade, my doctors say no, but we'll see. Next up is Humira for me. I have been having trouble getting it because of my insurance but hopefully I will get it this week. I've been off Remicade for 2 months and I am having more mini-flares.

I was on and off prednisone for over 11 yrs out of my 16ish years of having crohns, and the one and only side effect I ever got from it sometimes, not always, was tiny acne all over my back, other than that I never got any side-effects from it...everyone's different, and it was often a life saver for me over the years...unfortunately it no longer has any affect on me but I'm okay with that too since I now use the natural route.

Indeterminite colitis is what they call it when they cannot distinguish between either CD or UC...

With CD the inflammation can affect the many layers of the intestinal tissues, with UC, inflammation remains on the surface of the lining only...

With CD there are skipped patterns of inflammation with healthy tissue in between, with UC the entire area will be inflammed...

CD can affect the entire GI tract from mouth to anus, UC is limited to the colon, sometimes involving the rectom.

:)

Welcome to HealingWell, MarkG. You'll get a lot of different experiences and opinions here, and being informed is your best defense now.

Prednisone can be a blessing when used for short periods of time. It will snap most people out of a bad flare within a week or two, and the short-term side effects are usually just a nuisance. It definitely isn't for maintenance, as the long-term side effects can be horrendous. Also, some people become steroid-dependent and can't taper off the steroids without flaring badly again. And the sad fact is that normally, over the course of time, it loses its effectiveness.

I was on Imuran for several years. It made me a little less sick, but no remission. I was lucky and had no side effects from it.

I've been on Remicade for two years now, and am finally in remission after being in a constant flare for five years. As you can imagine, I think it's the best thing on earth. In my case I've had no adverse reactions so far. They tell you it can lower your immunity, but I never get infections. I've had one cold in the past two years, and was recently on antibiotics for the first time since being on the Remi. With a little boost of taking extra probiotics, I made it through the abx without going into a flare.

There are others here who can tell you more than I about alternative treatments and diets. Do be sure you're taking a good probiotic, though, as IBD is characterized by a decrease in the bacteria found in a healthy colon.

Have you tried Rowasa enemas? Oral medications don't really treat the rectal area because they're largely disolved and absorbed before they get there. Providing the same meds directly to the area can be very helpful in bringing things under control.

If you do need to use one of the second-tier drugs, just remember that all drugs, whether natural or pharmaceutical, have potential bad effects. My pharmacology professor once told us that when we take a drug, we're always balancing the potential good against the potential bad effects. I invite you to look up the possible side effects of aspirin: hemorrhage, swelling of the throat and trouble breathing, unconsciousness and coma, and so on. Companies are required to list every side effect that has ever been seen.

I hope you soon find the right combination for you, and are feeling much better.

Thank you all for your wonderful insight. It's very encouraging to have discovered this community and also helpful emotionally to see you all helping one another. I'm touched.

As I mentioned earlier, I really feel as this is a pivotal decision for me. Get on these drugs – the real serious ones – and I may be on them for a long time and have trouble coming off of them. That's why I'm really wondering about alternative approaches. I think I owe it to my body to try something different before becoming even more dependent on drugs.

I do understand that the everyone's experience is different. But after being on 6MP for a little while, seeing no improvement AND having it affect my liver enzymes, I'm worried that others may do the same. Or worse. Asacol + Courtenema aren't solving the problem either. And, in the last two weeks, things seem to be getting worse. For example, I have pain now when before, I never did. I have more emergency bathroom runs that ever and I'm much more gaseous. (A trifecta!)

It's been 1.5 years since being diagnosed and I don't see the light at the end of the tunnel. Very frustrating!