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MarkG
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/15/2008 8:01 PM (GMT -6)   
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?

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 2/15/2008 8:19 PM (GMT -6)   
Hi MarkG--welcome to the board! I don't have much information to offer you, as prednisone is the only med I've been on you've asked about. I'm sure others will chime in soon with the stories they have for the other meds. Prednisone is it's own animal. It can cause one to be more anxious, sleepless, have unsatiable hunger (which comes the famous moon face for some) and also can be something your body can become very dependent upon. It can also cause bone loss, in higher doses for longer periods of time. There are things you can do to combat some of those symptoms: decrease salt and sugars, exercise more, drink plenty of water, take calcium supplements, take your prednisone early in the morning and maybe even get a sleep prescription.

I will say that my three months on prednisone was worth it, although I fought it tooth and nail. It went to work within a few days and really eased my flare. I was able to taper without any dependency.

You can try a search at the top for prednisone and lots of posts will come up to help you see what the struggles are. You can do that for each of the meds you are talking about. Keep us posted!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!Canasa suppositories 1000mg 2X/day as of 1/22/08
 


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 2/15/2008 8:23 PM (GMT -6)   
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.
Diagnosed with UC in August 2005. 
Suffered for my whole life before being diagnosed. 
Told to "Eat more fibre." 
 
Currently on:

Salofalk 1500mg x 4/day
Entocort
6mg x 1/day


MarkG
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/15/2008 10:00 PM (GMT -6)   
Wow, Prednisone doesn't sound like too much fun. Has anyone tried an elemental diet as an alternative to, or in conjunction with, medication?

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/15/2008 10:00 PM (GMT -6)   
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.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/15/2008 10:51 PM (GMT -6)   
Hey Mark - for clarification, Imuran and 6-MP are actually the same drug. It is just one has a "tail" that leads it to be metabolized slightly differently than the other. for this reason, some people who can't tolerate one can tolerate the other. But, unlike Remicade and Humira, neither 6-MP nor Imuran are biologics. Remi and Humira are a differently family of drugs. I am on Imuran and have no problems with it at all. I can't speak to remicade, which I think is usually the next step before humira since humira in UC is off-label whereas it's on-label for remicade...

as for pred, it isn't a long term option but it is a very valuable tool when you need some immediate relief. I am really surprised you got on 6-MP without pred, as usually pred is prescribed to keep the person well while the other drug kicks in. pred has lots of really hard short-term side effects - anciety, mood swings, weight loss/gain, inability to sleep - and some long term problems that are more serious - osteporosis, diabetes, blindness - but in short courses it is useful. for me, it is great. awful, but also great, if that makes sense. bad side effects, but absolutely no signs of UC.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/16/2008 1:48 AM (GMT -6)   
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.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 2/16/2008 2:53 AM (GMT -6)   
Hey MarkG,
First, I think Pred may be a good choice just to get things under control. If you search Prednisone on this forum, you'll see tons and tons of posts on it with widely varying responses. Some people have no side effects, others have them all. I like to think I was kind of in the middle (weight gain, joint pain sometimes, moonface, but NO emotional mood swings--if anything I was more euphoric.)

However, another drug you may want to ask about is Prograf (Tacrolimus), which is similar to Cyclosporine. I'm not sure how good it is at healing flares, but it's kept me in remission for almost 8 months now! Truly my miracle drug! And I have no side effects, though some experience headaches or don't tolerate it well.

Anyway, as long as you're with a good GI guy who is an IBD/Colitis/Crohn's specialist you should be in pretty good hands! And never be afraid to ask for a second opinion from another doc.

Good luck!
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/16/2008 4:15 AM (GMT -6)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 2/16/2008 5:21 AM (GMT -6)   
Hi Mark and welcome!
I am currently on prednisone for a flare that I just had. I've been on and off the drug ever since I was diagnosed.
I for one don't seem to have any problems with it. I do experience many of the things others have talked about but, it helps me get my flare under control for the time needed. The other things are nothing to me compared to being in a flare and the pain that comes with that. I am also very active...I exercise a lot and so I think this helps me make it through the bad things about this drug.
I also do think that it works to help you get back in control during a flare. It does for me anyway. I realize that everyone is different however this is just my experience.
I am also on Remicade, however, I just had a pretty bad flare and I really don't think it's working. I had a scope done two weeks ago and the doctor thinks we may need to increase my dosage. I will find out soon how that goes. I had to have some blood work done first and then she'll determine if it's still working for me. I do believe that it worked for a little bit when I first started it but now I really don't think it's working. So, technically it only worked for me maybe a few months.
Best of luck to you and all of the decisions you'll need to make.
This board is wonderful and has helped me so much. I hope you find it helpful too!
UC diagnosed in 1985...22 years.


Remicade


50 mg 6mp, Rowasa and Cortenemas as needed.
Probiotics and Aloe Vera Gel, Chlorella and digestive enzymes.


MarkG
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/16/2008 7:43 AM (GMT -6)   
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!
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