Scared about starting Pred. but making progress...

Hello all....

Well my gut still has'nt mellowed and now the doc has issued me Pred. 20mg x 2 / day.  I am quite nervous about taking it as I have seen a lot of people discussing the side effect of it.  Also the doctor told me about the other side effect of brittle bones or joints (mainly hips) 

Is there any suggestions or advice any of you that have taken it, can give a first timer to maybe make the experience as pain free as possible?

Thanks...

Hi...were you on rectal meds as well?

you don't HAVE to take the pred if you don't want to.... you could ask for Entocort pills and use the steroid rectal meds in conjunction if the 5ASA meds aren't working for you.

Did your doc not offer you other options? Pred is a high price to pay if there are other options.

Just an alternative perspective.

q

Thanks guys....
Lets see....Ive been on Asacol for 4 weeks and it seems to have helped a little and Ive only been on the Cortofoam for 4 days and havent really noticed a difference. (not enough time Im guessing) The problem is that I am still unable to eat. I will be doing fine with almost no blood and little mucos and the urgencies very limited (probably because I have nothing in my system) but as soon as I eat anything, everything gets escallated. The mucos and blood increases quite a bit and the urgencies become much worse. I have now lost 31lbs in 4 weeks and my system is no longer absorbing the Ensure, it just goes straight through me now. My doctor did not give me any other alternatives, he just said that I need to start on the Pred. for approx. 2 weeks. I dont know were else to turn or what to do. My dietition gave me a big list of foods that I can eat but also suggested that I talk with my doctor about Pred. when I talk to my doctor he said that he does not want me to eat until this gets under control. I asked for an alternative to the Ensure and he said that I can eat banana, rice pablom and applesauce. He also told me to continue my other meds while on Pred.

Thanks...

I've tolerated Prednisone pretty well. I've had three courses this year; finally getting off one (hopefully.) As pointed out, just because you hear a lot of nasty stuff about pred. doesn't mean it will happen to you. The only immediate problems I have had is sleep issues, some minor acne, increased appetite, and some minor moodiness (wife might beg to differ "minor".) I can handle all of these if it means putting a stop to a flare, which it always does. Be cautious, but not scared.

I didn't know alot about UC when I had my first major flare. My GI put me on pred. and it almost immediately stopped my symptoms. My side effects were insomnia, shakiness and head in the clouds feeling.

The second time i went on pred. I had to use a higher dosage to get the same results. I also became steriod dependent and eventually went on Imuran.

I have never once had a GI (I'm on my second) to tell me not to eat. It seems like you have lost a ton of weight. Have you considered a second opinion?

I wouldn't worry too much about it - it sounds like you need pred to me. I agree with what Old Hat says in terms of what to do when you are taking it. The tricky part is how to get off it once you are on, if you are on it for more than two weeks or so. But, when you need it you need it. I lost a bunch of weight too, but it was not so much due to a flair as to a bad reaction to Lialda that even 40mg of pred could only partially help. Once I went off the Lialda, I had perfect bm's/urgency, etc like I had never had for years - and I only got diagnosed UC last spring! Problem is, I dropped the pred too quick and the symptoms returned around 6.5mg. Plus, pred isn't a cure anyway, I still need to find a long term solution.

As for side effects, I do wake up earlier. Face puffing (some) after three weeks, acne after a few months. But when you've lost weight, face puffing is okay. You get a little jittery, but you sort of have more energy. I didn't have much emotional change. Knees are affected a little, but this went away at smaller doses.

Foster Dad

You really need to get under control and eat. So don't panic.
I took pred.....at a pretty high dose when I was fifteen and was on it for over a year.
I had lost 30 lbs and needed six blood transfusions.

Pred got me out of the hospital and back on track. Within a year, 98% of the inflammation was gone. I was left with mild, left side UC.
I hated the moon face (but I was a 16 year old girl) and I had the appetite of ten men. I once ate an entire angel food cake.

Once I started tapering, so did the side effects. Long term has not been all that bad. I am 61 and my bone density is great for my age group...I walk a lot. I have these goofy bumps on my wrists and ankles and there was premature lines on the face...stretch marks from moon face.

However, the trade off was worth it for me. To be able to go back to a relatively normal life was great.

And when I was having a lot of trouble with foods, my docs suggested baby foods. It wasn't all that bad,

I forgot to mention - after being on the prednisone off and on for almost a year I discussed with his doctor getting a bone scan done to establish a base line and it's a good thing as it shows some osteopenia in his low spine - the other areas are ok. This can be reversed from what I understand with the fosamax once a week and hopefully getting back into some weight bearing exercise at some point.

If your insurance allows it might not be a bad idea to get one now and keep tabs on it later if you get on the prednisone and need it to help bring about remission(s). The calcium supplements is most important as mentioned to keep your bones as healthy as possible.

Hey guys....

Well, lets see.  I started pred. almost a week ago as recomended by my dietition, naturalpath and my doctor.  I was so excited when I was talking to my dietition because she gave me a list of safe foods that I could eat which sounded great, but then 15 minutes after talking with her, I was talking with my doctor to get my pred. prescription and told him about the list of foods and he told me that the only thing I was aloud to eat was apple sauce, banana and rice pablum. (how freakin disheartening)  Ive now lost 37 lbs. thats approx. 14% of my body mass.  My energy level is very low, my mood is spuratic and now this crap that the doctor has me eating is making me bunged up which makes me feel sick.  Im still getting a little mucos and blood in the morning, but the urgency's have subsided slightly but I feel so bloated.  I have a appointment with my GP today, so hopefully we can get something figured out.

With regards to my UC.  All I know is that its from my rectum to my transvercolon.  How much of the transverscolon it has affected, I dont know.

The thing I found kinda weird is that the pred. that I am taking are little white 5 mg pills with no coating, so the pretty much disolve as soon as I put them in my mouth.  Is that normal?

Im still taking my Asacol and Cortofoam as well.

The last couple days I have been on a very low pitty party. I feel so bad for my wife and baby.  Im almost ready to give up and book the surgery.  I dont know how you long timers managed to do this.  Ive only been diagnosed for 3 weeks today and Ive about had it.

Thanks again for all your support people.

Hope to talk to you soon.

 

Foster Dad...what did the dietitian suggest for you to eat?

Are you following the doctor's suggestion or the dietitian's? You need protein to help you heal.

You'll be malnutritioned before you get better....something seems off..maybe you need to seek out another doctor?

q

Hey Guys....

Well I just got back from my doctor and I had a good LLOOONNNGG talk with him about the doctor that was covering for him. My doctor has changed a couple things for me. He has told me to take my Pred. once a day in the morning instead of spliting them up. He also says that I can eat blan foods (ie rice, potato, apple sauce, banana) just for the next couple of days because then I have another appointment with him on Thursday. He wants to see how Im doing after being on the Pred. for 1 week. He is hooking me up with a good GI and we will be working together with him. I will be taking the list of foods, that the dietition recomended for me, in on Thursday and will have him check off what he thinks I can eat. Right now I am following my doctors orders as long as the recomendations are moving forward as today is the first time I have actually seen MY doctor, and not the fill in doctor. My doctor just found out today that I have UC.
Oh ya....and just to add insult to injury, I thought I might have a roid and it turns out that my doc says it a freakin fisher (?spelling?) and probably gonna need surgery on that. Cmon already enough is enough.

The foods that the dietition recomended for me were.......Yogurt(with no berry seeds) cheese, egg, banana, 100% whole wheat bread (with no seeds) cereals (rice crispy's, chex, special K) chicken, fish, smooth peanut butter, crakers (ritz, soda) potato's, rice (white or brown) apple sauce, canned fruit, soups(chicken noodle, vegitable) pasta, carrots, squash, beats, yams (all veggies steamed soft) margerine, mayo (small amounts for fat intake because of the drastic weight loss) No heavy seasonings or anything like that.

Anyways, thats what I know now.....and I think I see a slight little glimmer of hope coming. I will let you know what happens after my next appointment on Thursday.

Thanks again for all your advice and links...keep em coming KNOWLEDGE IS POWER.

Ok....newest update....

Just had another doctor visit this afternoon.  My doc apparently pulled some strings for me and instead of having to wait 4 - 8 months to get in to see a GI, I have an appointment in 1 month with one of the best on the island.  Guess its better than a kick in the crotch.  My doctor also appoligized for the mess up when I was first diagnosed (while he was on vacation) because I was only give Asacol.  He said that I should have been given steroids right then instead of having to wait 3 weeks till he got back.  So it was nice to at least hear someone acknowleging the mess-up.  He says, for only being on Pred for 1 week, I am showing signs of improvement.  He also said that I will probably be on Pred. for approx. 1 month....give or take, and he has changed it from 8 - 5mg tabs in the morning to 1 - 50mg tab in the morning.  Im guessing that the slightly higher does wont be that noticable. **fingers crossed**

With regards to the fissure, my doc is going to let my GI deal with that.  Im guessing I will probably need surgury as I have had one before. Can always hope it goes away though.

I finally got him to sit down with me and go over the food list that my dietition gave me and he gave the ok for everything except bread and prawns.  He wants me to wait a bit for that.  I also have to go easy on the oils, cheese and yogurt.  I was exstatic to have a little food list anyways.  Now I just have to try and control myself so I dont go too nuts.

So....it seems that now that my actually doctor is involved, things are starting to take a turn into the right direction.

Thanks for all your input support and kind words.