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Pred taper

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Posted 2/3/2016 4:31 PM (GMT 0)
Hi all, I have just finished my 3rd loading dose for remicade on Jan 15 and have been doing fine since then; however, I have also been tapering down off of my pred as well and ever since tapering to 20mg a few days ago I have not been feeling so well. I was on 5 pills (25mg) since Jan 1st I believe so it has been 4 weeks. It is not like I have been tapering down real fast but since going to 4 pills I have been experiencing some diarrhea which I usually do not exeperience. In fact most of my BM's are on the harder side of the block. Since going down to 4 I have also been putting in mild suppositories and every morning I usually have diahheria and bloating which I think is from them since they are the only change in medication that I have.

This really worries me and I don't know what to do because I am anxious to get off the pred since I have really bad acne and have gained some weight while being on pred. So I'm kinda looking forward to getting off of it, not only that but I've been on it since last year October everyday but have been on it all of last year on and off. I know that it is hard to taper the longer you're on pred but I thought I was going slow as I was feeling well and was on 25mg for almost a month yet when I reduced to 20mg I am now experiencing some tiredness and stomach pain but I know they can be caused from the pred taper as well.

Any thoughts on what to do? My mom told me to start cutting them in half so I am now taking 4 and a half as opposed to climbing back up to 5 pills again. I am also taking iron pills (I have for awhile and they do not hurt me), vitamin C and calcium. My remicade is every 8 weeks and just finished the loading doses. I know it is working as when I was on 40mg of pred I had some blood and some muscous still but ever since remicade it has stopped the past few weeks. Now I see a little bit of blood in me stools again and I don't know what to do.

Any help is appreciated, thank you. cry cry

Post Edited (michys-mom) : 2/3/2016 9:34:11 AM (GMT-7)

Posted 2/3/2016 5:50 PM (GMT 0)
I believe Vitamin C can cause diarrhea, I would try stopping that for a while and see what happens. Also do you take any anti diarrhea medicine?
Posted 2/3/2016 6:18 PM (GMT 0)
How much vitamin c are you taking, because if it's not a lot...it won't cause you diarrhea.

I'd suggest you ask your gi for stool sample testing kit just in case something else is going on.

You could consider to add rectal meds, even a steroid to give a bit of a boost but not having to totally increase the pred.

You could increase the pred, but a half dosage by cutting the pill in half.

q
Posted 2/3/2016 6:53 PM (GMT 0)
Pred pills come in 1mg and 2mg as well as 5mg. Recommend getting lower dose pills rather than cutting in half. Then you can probably manage a slow decent.
Posted 2/3/2016 8:30 PM (GMT 0)
Ugh, I am sorry to hear this -- I've been struggling to get off the pred as well, and the doc decided to "advance my treatment" this week.

I did try (carefully) adding some fiber back into my diet with steel-cut oatmeal, that seemed to help some with the diarrhea. Other than that, I don't have much advice, I'm too new at this. :-)
Posted 2/4/2016 2:14 AM (GMT 0)
It's probably just the pred taper that is making symptoms come back. Most people have a certain amount of mgs that they are dependent on. For me, whenever I got below 15mgs, symptoms would come back. Have you been below 20 mgs of pred before and felt okay? If you haven't ever been under 20mgs of pred before and felt well then I wouldn't be so quick to blame the D on the suppositories. It is probably just the pred taper and you are dependent at 25 mgs.

You might try moving your remicade up to every 6 weeks if the loading doses didn't get you relatively better. Keep in mind, it is a little more difficult to gauge exactly what the remicade or any other medication is doing while you are on prednisone, unless of course you know the amount at which you are dependent on. For instance, I did a quick taper of prednisone starting at 20 mgs a little over a month ago, I was feeling great within days but knew that judgement day would come a few days after tapering down to 10mgs. After I tapered down to 10mgs, eventually 5mgs then completely off without symptoms returning, I knew the remicade was working well.
Posted 2/4/2016 2:30 AM (GMT 0)
I agree with The stool test.
Also Get some steroid enemas those will help with symptoms and make the taper easier.
Posted 2/5/2016 4:50 PM (GMT 0)
Hi - thanks all for the replies.

I didn't know vit c can cause diarrhea, but I am taking 1000 mg or icu or whatever it is.
I agree on the stool test as I did just come back from Niagara Falls ( went out of town for 3 days) and ate out all the time but I am celiac as well. I am 99% sure I did not gluten myself and so am feeling the side effects from my colitis. Unfortunately, it is not like I went to a different country so c diff I think is not a viable option but if this continues I will get a stool sample. My mother is away for 2 weeks so I guess I will have to wait until she gets back to be able to do that lol.....
Maybe just the stress of work and her departure on vacation has led me to flare while on pred and remicade (I am 19), but otherwise I do not know why suddenly I am not feeling that good.

I don't want to try steroid enemas because I feel like it will be another thing I have to taper off of, and also my doc will not be called for every 6 weeks on remicade when I just started and we are testing to see whether I can last the 8 weeks. I went back up to 4 and a half pills not 5 and am waiting so I can get my hands on 1mg pills but I am also starting to feel the side effects of the withdrawal (as in, extremely extremely tired, my body aches everywhere, and I have massive headaches these days), any advice anyone?

-I did stop taking the vit c, but I am looking for alternatives as I am low in calcium and my bones are hurting so I do not want to have other problems in the future as well.
-Maybe the supps are not working as the next morning I always feel really bloated and the need to go more than usual.
-I went today this morning and there was, sadly, more blood than usual which scares me because I think either the remi is not working or I am prednisone dependent (which I wouldnt be surprised since I've been on it for months now)

Just confused and frustrated and tired.
Posted 2/6/2016 8:27 AM (GMT 0)
Hiya. I am on a Pred taper as well and have just had my third remicade, as well as starting azathioprine 4 weeks ago. I am at 15 and about to go down to 10mg. I am now steroid resistant and even 400mg steroid ivs in hospital weren't working! I had the same problem tapering a year ago due to my resistance and I just had to hold steady on the same dose for a little longer, then taper v slowly. I have just emerged from my worst flare ever but I have to say that diet has really helped whilst the remicade kicked in. The SCD diet with no grains, no alcohol, very low sugar, no dairy has really put me in a good place. I am done with Pred - it doesn't work now anyway and wrecks your health!!!

Good luck…

Catherine
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