HealingWell
Search Close Search
☰

Just DX with UC

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/5/2012 2:53 AM (GMT 0)
:-)  i,

I was newly diagnosed with UC.  I started my prednisone about a week and a half ago.  It worked so fast in making me feel better.  I start the Asacol in a few days.  I know everyone is different...but I guess what I was wondering....is what is life like from here? 

I will be starting to taper the prednisone for another 7 weeks.

I believe the only side effects I have experienced is hair loss and (slight) weight gain.  Do the side effects keep getting worse with the tapering?

Is life "normal" with the Asacol maintenance?  Or do you have good and bad days?  I guess I thought everything would be normal unless I would have a flare up? 

Any comments would be greatly appreciated.

Thanks!! :-)

Posted 11/5/2012 3:12 AM (GMT 0)
Everyone's case is different but UC is generally classified as a chronic life long disease with periods of remission and periods of flares. It is best to read up on it as much as you can. Your pred withdrawl symptoms will probably get worse and worse as you taper. Most don't realize it but your very worst time is probably going to be tapering at the lower doses. Asacol may or may not keep you in remission. Even though you can obviously have good days and bad days there is no guarantee you will be able to get off the pred, use Asacol, and be normal. It may happen, it may not. Hopefully it will. I have had UC and been on Asacol for over two years and have been in a flare the whole time. It's never stopped. I never took pred though and right now I don't intend to. I took it several years ago for another autoimmune disease and know that long term use can give you more problems than just living with the UC, which is what I do. The Asacol helps. The trouble with pred is that it is evil and plays tricks on you. It seems to work fine and then when you get to too low of a dose your troubles kick back in again and they up your dose and start all over again. Before you know it you have been kicked back up to a higher dose several times and find that you can't ever get off of it or, if the doctor is "smart enough", they try even more dangerous drugs and get you off the pred. I'm not saying that this is going to happen to you but you do have to read up on this stuff and be prepared ahead of time. Good luck.
Posted 11/5/2012 3:24 AM (GMT 0)
Thanks so much for all the info!

There is so much to learn right now and it all helps.

I'm hoping for the best :-)

 

Posted 11/5/2012 4:33 AM (GMT 0)
Everyone is different but just keep reading info on here, asking questions and see how things go for you.
I haven't felt "normal" since the onset of symptoms. But I do have long periods of feeling totally fine, just not like it used to be.
Posted 11/5/2012 5:16 AM (GMT 0)
THANKS!

I appreciate the help and comments.

Posted 11/5/2012 5:20 AM (GMT 0)
Goldenlover, if the pred is making you feel much better so far, I'm hopeful that you will continue to improve. What dose are you taking? The amount of side effects you get from the pred are really dependent on how high the dose is and how sensitive you are. For example, I took pred for 3 months several years ago, starting with a dose of 60 mg/day for 1 month. The worst side effect I had was some problems sleeping at the end of that first month. I tapered off fine and haven't been back on it since. Most people these days start at 40 mg/day and taper from there.

You do have to be careful with your taper and make sure you don't go too fast.

Also, I want you to talk to your DR about using mesalamine enemas to help maintain your remission. The oral Asacol is great for treating inflammation in the colon, up to the point you get to the sigmoid colon and rectum. The oral meds don't really work there. You'll be more successful if you "treat from both ends," as they say around here.

And yes, when you get into a complete remission you will feel fine. But you should continue taking your meds anyway to stay that way.

Welcome to the forum!
Posted 11/5/2012 5:29 AM (GMT 0)
kazbern,

Thanks for the advice and info.

I started with 40mg for 2 weeks and then each week 5mg less for 7 weeks.

I'm not sure for the Asacol...I'll fill the prescription on Wed.

Posted 11/5/2012 7:32 AM (GMT 0)

I am also recently diagnosed. Do you know about the CCFA (Chron's and Colitis Foundation of America)? They have informational symposiums in different parts of the country for patients and their families, seems like a great resource.  Good info on their site too. I was supposed to go today to the San Francisco Symposium, registration was only 10 dlls. but ended up not being able to go and I am sorry I missed it.  Being proactive is the way to go. Best wishes to you.

Posted 11/5/2012 2:05 PM (GMT 0)
Goldenlover and NomasUC,

Wecome to the forum.

Glad you found us. This is a great place to ask questions, get support and even whine.

We all do differently on the meds.

Sounds like goldenlover, you are already doing better on prednisone, and hopefully it will kick-start your recovery.

As far as long term prospects, that is all dependent on:

- meds you're on and if you tolerate them well

- stress level in your life and your ability to handle it

- finding and working  with a good GI

- being pro-active as to what flares might come one, and jumping on the slightest symptom that resembles a flare and: add rectal meds, perhaps increase meds, do some diet modification

- finding out what your body likes and doesn't like in terms of food - a good way to learn this is via a food journal

- certain supplements help alot: L-Glutamine amino acid powder, slippery elm powder, and probiotics

- ensuring your Vit. D3 levels remain at a good level (your doc will need blood work for this determination)

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 11/5/2012 2:08 PM (GMT 0)
Hi and welcome.

Ditto kazbern on the mesalamine enemas. Studies show they help patients reach remission more quickly when used in conjunction with oral meds (vs. oral meds alone) and that patients in remission who use them twice weekly along with daily oral meds, stay in remission longer than those only using oral meds.

I've been in remission (ie, no symptoms, no inflammation on a c-scope last October) for 3.5 years now with this combo, plus a good-quality probiotic.
Posted 11/5/2012 2:22 PM (GMT 0)
a short taper of pred is generally not a problem unless you are particularly sensitive. also, tapering is critical, but the gradual pace is less needed the shorter time you have been on the pred.

you sound like you are in a good position. good response. tolerating 5-asa. getting educated ... etc.

2nd flares are usually worse and sometimes less responsive to pred. So, maintence is important. You can do this with 5-asa, or some supplements with anti-inflammatory properties do about as well for remission.

If you have lots of urgency and pronounced inflammation/ulceration in the rectum or sigmoid colon, the 5-asa enemas do make sense for maintence. If your worst inflammation was higher up the left colon, the 5-asa can be a toss up - but best to have some in case another flare begins.

There are some interesting nutritional approaches that are just starting to get attention. You can find some articles cited on this board. Try to learn, but understand some of these contradict each other, ad more controlled trials are still lacking for some things.

I would recommend a followup scoping in about 18 months to understand if you treatment is healing/clearing all affected areas, or if there are hot spots persisting.

Post Edited (DBwithUC) : 11/5/2012 11:49:52 AM (GMT-7)

Posted 11/5/2012 3:21 PM (GMT 0)
NomasUC, InSoFla, Fruitgirl, DBwithUC

Thank you all for the help and advice!  There is so much to learn!

There is a part of me that wishes I had a "crystal ball" to see the future of what will come of this, but then again, not knowing can be good too :-)   One day at a time.

I am happy that these resources are available for newbies and veterans as well.

 

Post Edited (Goldenlover) : 11/5/2012 8:46:03 AM (GMT-7)

✚ New Topic ✚ Reply