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Ulcerative Colitis
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Posted 6/12/2014 1:14 AM (GMT 0)
Hi all,
I always read posts and find everyone so intelligent and informative . I've asked questions before , but here I go again . After reading so many negative posts about prednisone and it's horrible horrible side effects , I wonder about my decision making . I have been on and off prednisone for approx 10 years . It has always helped with flares . My problem has always been when I try to get off completely I flare up. I seem to be ok on 2.5 mg, with no side effects . I can live a very normal life . I have in the past tried Imuran/6mp but I got very sick from it . I am now on 5 mg of prednisone and asacol , as well as mesalamine enemas . My Dr kept pushing remicade on me for years , but just recently said he thinks it's ok for me to stay on 2.5 mg of prednisone long term . Firstly , to get from 5 mg to 2.5 how long would you take to decrease ? Would you take 1 mg pills ? Also do you think the long term side effects from that amount would be very dangerous ? Everyone is kind of scaring me with how evil a drug this is . Am I better off just starting remicade ?i would really appreciate any input from you intelligent well informed ucers!


Ulceratice Pancolitis- for 21 years
47 year old female
Current meds- asacol, prednisone 5 mg, mesalamine enemas
Posted 6/12/2014 1:29 AM (GMT 0)
Tough question. Almost impossible to answer, even for professionals. Not much info on it either. I will say this. Your body makes somewhere between 8mgs and 12 mgs of cortisol every day all by itself. Whenever you take more than that dosage your adrenal glands shut down and quit making it. When you taper lower than that dosage your body should start manufacturing cortisol again on it's own. If it doesn't, that's not good. Taking prednisone at that magic dosage or higher for long periods in unquestionably a very bad thing. Taking dosages lower than that I don't believe has enough studies to say one way or the other. If I were in your shoes I would try it and see what happens but I would get regular tests for bone density and blood sugars as long as you do this up to forever. I actually made a post on this a long time ago asking about long term low dose prednisone usage. There have been a few doctors who believe in long term low dose prednisone but I don't think that there are any stats to prove it is a good thing or a bad thing. Most all stats badmouthing long term prednisone usage assume you are taking that magic dosage amount or higher.
Posted 6/12/2014 1:41 AM (GMT 0)
I agree with everything Gary said, its a tough call and it will vary from person to person.

That being said, you have to weigh the long term effects of chronic inflammation against the possible long term effects of low dose pred. Chronic inflammation can lead to all sorts of other issues (scar tissue, other immune disorders, autoimmunity, etc) so its not like not taking pred is going to leave you without damage.

If I were in your shoes, I would honestly consider a biologic; whether it be Remicade or Vedo. They arent safe, but the risks associated with them long term as certainly less than the potential risk with pred. But thats just me.
Posted 6/12/2014 1:44 AM (GMT 0)
Thanks Gary, you are very helpful! How would I know if my body stopped manufacturing cortisol on its own when I taper lower then 8-12 mgs. Would there be specific side effects that I would feel or wouid it be invisible ? I wish there was more info out there on this subject for the few of us who do well on this amount .
Posted 6/12/2014 1:49 AM (GMT 0)
@ marauder I'm scared to try biologics . Any major drug I've tried I've gotten really sick from. I'm scared the same thing will happen with remicade . I'm mostly afraid that it can cause other auto immune disorders such as lupus, arthritis . I would be so devastated if that happened . At least I have a normal active life right now .run marathons have a great appetite and feel normal . I'm afraid of the what ifs .
Posted 6/12/2014 2:03 AM (GMT 0)

Marathon 5 said...
@ marauder I'm scared to try biologics . Any major drug I've tried I've gotten really sick from. I'm scared the same thing will happen with remicade . I'm mostly afraid that it can cause other auto immune disorders such as lupus, arthritis . I would be so devastated if that happened . At least I have a normal active life right now .run marathons have a great appetite and feel normal . I'm afraid of the what ifs .

The good news is that the biologics act through a very difference mechanism than imuran, 6mp etc, so getting sick from one of those will not correlate with the chances of getting sick on a biologic. In my opinion, the biologics are actually safer (and less likely to make you sick) because they only act on proteins (cytokines) while imuran and 6-mp work on suppressing the bone marrow.

And are you afraid of remicade causing those disorders or the chronic inflammation? Because chronic inflammation can definitely lead to those, but Im not sure Ive ever heard of Remicade being a direct cause (could be wrong though, Ill look into it just in case). Either way, assuming it does increase your risk of those diseases, your still at a higher risk with the inflammation anyway, so theres really not much to loose.

So ya, obviously its totally your choice if you want to avoid biologics, some people just dont feel comfortable with them and thats cool; it just limits treatment options. I just want to put the dangers and risks into realistic terms so that you can make an informed decision about your health based on facts and your own wants/desires : )
Posted 6/12/2014 2:07 AM (GMT 0)
Your body could go into adrenal shock. I'm not really sure what those exact symptoms are but they would not be invisible. You would definitely know it. That rarely happens but it does happen and it's not good. You should be able to google adrenal shock.
Posted 6/12/2014 2:16 AM (GMT 0)
@ marauder : I see you were on
Remicade- why did you stop it ? I also want to
Leave Remicade for a last resort drug in case I'm in a very
bad state and I've got nothing left .
Posted 6/12/2014 2:19 AM (GMT 0)
@ Gary I am going to google adrenal
Shock so that I am aleast aware of what it is . Thanks I appreciate all your help.
Posted 6/12/2014 10:53 AM (GMT 0)

Marathon 5 said...
@ marauder : I see you were on
Remicade- why did you stop it ? I also want to
Leave Remicade for a last resort drug in case I'm in a very
bad state and I've got nothing left .

Unfortunately Remicade never did anything for me. I was on it for almost 2.5 years and felt nothing from it; no side effects and no effects on UC. I probably should have gotten off of it way sooner but I didnt want to give up on it because once you get off of it its tough to get back on.

If your not feeling too sick now then saving the Remicade is definitely a good idea for the reason you mentioned. However, keep in mind that there are other drugs coming down the pipeline for UC as we speak. THe main one now that everyone is excited about is Vedolizumab which is another biologic that many think (including myself) is actually better than Remicade. Additionally, some people on here are in clinical trials for a drug (non-biologic) called Tofacitinib which should be out around 2016-2017 from what Ive read. So you arent on your last options yet thankfully : )
Posted 6/12/2014 5:39 PM (GMT 0)
I had some time and came up with this link for you, which I think you will find interesting. It actually refers to a different disease for which prednisone is also taken but talks mostly about prednisone itself and it's effects on the adrenal glands. One thing I noticed while reading it, which I forgot, is it might be best to eventually take 5mgs every other day and take zero on the other days instead of taking 2.5mgs every day. Here is the link:

http://www.cssassociation.org/patient-stories-reader/items/reducing-steroids-while-on-a-low-dose-activating-the-adrenal-glands-by-marian-mesker.html
Posted 6/12/2014 6:07 PM (GMT 0)
@ Gary, thank you so much ! Interesting how my own G.I doesn't even bother to give me this important information .This is Very very helpful. I will do that and perhaps the side effects will be lessened . I've learnt way more from this forum then I have in 21 years with the same doctor . I so appreciate your help.
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