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Flare taking a turn for the worse I think..

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Ulcerative Colitis
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Posted 6/8/2010 2:00 PM (GMT 0)
so this flare started in early may..since then I have had eye surgery and my nonno died last week increaseing the stress in my life three fold. I have since changed meds to PEntasa and was taking 8 daily to see if that could get it under control along with my nightly enemas and morning suppositories...I just upped the Pentasa to 12 a day late last

week to see if that would help. So far not much change.

I went to see my GI yesterday. I guess he is concerned with how often I flare and suggested Imuran. I turned him down. He wanted to take a look inside and did with the rigid scope. He said that down below looked normal to him and is probably thanks to the enemas and suppositories that I use daily. He thinks at this point it is a waste to be using them as things are fine down there..I am going to continue despite what he said. He thinks that probably is higher up especially cause I am having D and cramping up higher. He also suggested a short course of prednisone starting at around 30mg. I am not sure what a short course would do..I would probably flare again shortly after if its too short..What exactly is a short course and how is it tapered when its short?

I was a little tempted to say yes as I could use some extra weight right now and really just want to nip this as I feel it is getting a bit worse now. I have not been faithfully taking 2 vsl a day as I cant afford to right now :(

We left off that I would call him if things got worse and lets see what happens with 12 pentasa a day..he also prescribed cortenemas which I will start tonight on my request. He doesnt think they will help much..he said at best the left side only.

What do you thihnk?

take the steroids or wait?

Posted 6/8/2010 2:12 PM (GMT 0)
His concerns about the frequency of your flares are valid. You need to get in remission. Personally, and from my experience, prednisone is not the way to do this in your case. It appears that the ASAs are not doing their job and you need to consider the next step; Imuran or 6MP. I don't know what your fears are related to those drugs but you should fear prednisone far more than the immunosuppressants. Iy will take months to see if Imuran or 6MP will work so the sooner you start the sooner you will know if you are going to respond.

Sue
Posted 6/8/2010 3:51 PM (GMT 0)
I was on Humira and hated how I felt. Plus I still flared anyway with blood and urgency so always ended up on prednisone as well. I dont like the suppression of the immune system and how those drugs work systemically.
Posted 6/8/2010 4:01 PM (GMT 0)
I would follow your GI's suggestion. If you do not like the way he is managing you you should find another Dr. I am not saying you never question your Dr or make your own suggestions. But you are flaring right now and you MUST stop it. If the cortenemas fail to do the trick you must take it to the next step asap! When was your last scope..???
Posted 6/8/2010 4:27 PM (GMT 0)
last scope was in April it was not a full scope.it was flex sig and as high as they could go things looked fine. I am going to try the cortenema and if they dont work I will do the steroids.
Posted 6/8/2010 4:45 PM (GMT 0)
more pred 30mg does not do much try something more like 50mg to 75mg for 2 to 5 weeks then taper it off over at lest 8 weeks or u will get headaches and the rest

i can see ur on Salofalk 4g Enemas why not also take 3g Salofalk oral (6 tablets) to treat the UC higher up i see u stopped it but why it is safe to do the 4g enemas and the 3g oral at the same time

also it might be a idea to try a different immune suppressive drug. may i suggest azathioprine or puri-nethiol

the pred is a good idea to have when trying these other drugs as it will limit any reaction to them making it safer

Post Edited (08yannch) : 6/8/2010 10:48:17 AM (GMT-6)

Posted 6/8/2010 4:51 PM (GMT 0)
I would probably consider the prednisone right now to help you temporarily while your under such considerable stress. Maybe also try a cheaper probiotic. The ultimate flora critical care is what I take and it really seemed to help me throught the worst of my flare. Also I would continue the Pentasa too... It is hard to get a flare under control while you are grieving...I know I went through it last year when my nana passed away. Sending you hugs! Take care!
Posted 6/8/2010 4:54 PM (GMT 0)
I'm confused about why you're going to try cort enemas? It sounds like the Mesalamine ones are doing a good job. If things are higher up, then maybe the Pentasa increase will help?
Posted 6/8/2010 5:02 PM (GMT 0)

The only downfall of pred in my opinion is the side effects. With regards to helping UC, I think pred is the best option.

I think I may have done what your doc is referring to with the "short cycle." I did prednisone starting at 20mg and tapering down every 4 four days. It started to work instantly, like after the first day, but after that everything came back.

I'm thinking of asking the doc to do another round of pred because I'm still having pain and blood, even though he says its not the UC causing it.

Posted 6/8/2010 6:09 PM (GMT 0)
UGh- going to try the enemnas cause although the rectum looks clear there could be inflammation right above as I am getting left sided pain and low back pain as well..

08yannch- I stopped salofalk but started pentasa 12 tablets a day. I want to give them some time. Its an extra 2g I added so hopefully it helps some.

I am going to consider the prednisone..I just want to give the cortenemas a chance first before I move on to something systemic.

Maybe I should try a cheaper probiotic..but wouldbt the more expensive ones with more bacteria work better?

Posted 6/8/2010 6:23 PM (GMT 0)
If the short course he wants to try doesn't work, no harm done. You can then go to a bigger, longer regimen or something else. But if it nips it...then great!

VSL is not the only probiotic with tons/billions of good live bacteria, but it might be the most expensive.
Posted 6/8/2010 6:28 PM (GMT 0)
What other good probiotic do you all suggest that is cheaper?
Posted 6/8/2010 6:51 PM (GMT 0)
Have you considered any of the alternative treatments like fecal transplant or whipworms?
Posted 6/9/2010 12:41 PM (GMT 0)
Levi- no I have not.

I have no idea what to do here. I dont think VSL is doing anything and Im spending so much money on it. this morning I woke up with cramping and dark red blood that was even there when I wiped.

I didnt pick up the cortenema yesterday cause some here made me feel like it wasnt really worth trying including my doc but I dont know now...

I am scared of what is coming..prednisone..or something worse...:(
Posted 6/9/2010 1:49 PM (GMT 0)
Have you been on oral pred before? Yes, the side effects suck and you won't feel good on it, but I think you should consider going ahead and doing the course now before this flare gets any worse. Or maybe give the pentasa a little longer but don't be scared of the pred. It's not fun but it's not as doom and gloom as people make it out to be. Even with me being stuck on it for gosh 3.5 months now I would do another course of pred in the future if I had to. I wouldn't do 60mg starting dose again and I won't ever taper 10mg at a time again, though. Definitely don't be scared by stories like mine. I am stuck on pred. because of a mesalamine intolerance. Lots of people have good success getting on and off pred. onto maintenance drugs. In fact my doctor told me the other day all of his other recent pred. people were on about half as long as I have been and he had them off and onto maintenance drugs. I am a fun, special case.
Posted 6/9/2010 3:28 PM (GMT 0)

I have been on oral prednisone a few times before. The first time I was on 40mg for 3weeks..blew up like a whale and was a mad lady according to my family. I tapered at 5 mg a week until 20mg where I stayed for 2 weeks, then 25 for two weeks, and on like that until I was at 5mg for a bit and then off..I think I even split pills towards the end. The whole thing took from Feb to end of May...I flared again end of June.

However...at that point I was never on rectal meds. My scope showed severe UC in the rectum and sigmoid and the rest was mild.

The other times I tried oral pred was while I was on Humira..again I was never on rectal meds at those times either.

So I know what its all about ..am thinking that if the Pentasa doesnt help within  a few days..I may call in for a prednisone rx OR start the cortenemas and see if that helps any ..

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