Afraid to keep tapering... is that normal?

Okay so I been posting about how well I have been feeling.... well I have been tapering Pred and now tomorrow I go to 10mg. I am scared to do it. Not sure why. I think I feel a few twinges in my belly around my ulcerations but it could be my gall baldder... it could be my mind. I also have an increase in fatigue this week. I am due for my Humira on Sunday so that feels like a long time away. I think I am afraid that if I go down to 10mg I am going to get sick again. Is this a silly thought? I haven't been on Pred in 12 years.... so the whole situation with the side effects etc is driving me up the wall and I just wanta get off the stuff... but there is a little voice in my head telling me that if I wean off Pred even further I am gonna get sick. I am afraid and unsure what to do, still feeling pretty good but there is something telling me to stay at 15mg. Maybe I am just scared to get back to being so bad that I can't live my life. Maybe I am recognizing that it is more the Pred than the Humira that is working. I feel bad telling anyone around me that I might not be as well as I thought. My hubbie, my family, my friends, they all were so supportive over last few months and I just don't want to disappoint them if I get sick again. Is it okay to stay at 15mg until I am ready or is that just silly? Oh my I am not sure what to do. Feeling very scared and unsure.

Any thoughts?

B

I know when I get below 20mg I start tapering by 2.5 mg instead of 5mg. My doc kind of leaves it up to me. We taper by 5 mg until I get to 20 mg and then he says to go by my comfort level. I usually do 2.5 mg because I get nervous and don't want to have to go back up even 5 mg.

What does your doc think? If you are really nervous about it, you could drop to 12.5 mg this week and see how you feel, it is less of a drop.

my gi is the same with me, I'm 60 and have had cd for 40 years, dr's look at you a little different, my gi figures I know my gut better than anybody else, I'm one of those people who can't handle the hyperness of roid's, the night sweats, it atually caused more c than anything else, also when I would get gas, and this huge gas bubble would rumble around, I would think ok I've got to get this gas out,and it would fizzle out and I couldn't get gas out, that small little thing caused so much gas pain, where it would drop me to the ground or floor, and then I would just get in bed, it was horrible, it got the flare down in my throat and mouth (cankers) so once that got under control, I just told my gi, can't take roids, so we're at 10mg rem and pain med's, when needed

According to 3 different endocrinologists who have treated my son, most GI's taper their patients way too fast for comfort and safety. Endocrinologist's are the experts on the use and effects of prednisone.

This info is not meant to tell you what to do, just pass on the pattern that we have been told to use in the past. You should of course consult your own doctor about whether this kind of weaning schedule is OK with him.

We have been told that, if you have been on pred for more than 2 weeks you need to taper slowly. The following schedule has been prescribed by endocrinology in the past:

Pred doses greater than 10 mg should be taken in split dosing. If you are on 20 mg then you should take 10 mg in the am and 10 mg in later afternoon. At 15 mg the dosing would be 10 mg in the am and 5 mg in late afternoon. This most closely mimics your body's normal pattern.

The split doses should be reduced by first reducing the afternoon dose and then the morning dose. Assuming you start at 15 mg total with split dosing:

10mg am and 5mg pm for one week then
10mg am and 2.5mg pm for one week then
7.5mg am and 2.5mg pm for one week then
7.5mg am and -0- pm for one week then (stop evening dose)
5mg am for one week then
4mg am for one week then
2.5mg am for one week then
1 mg for one week then
stop.

This type of schedule can be slowed down or you can go back up in small increments if you feel bad or have recurrence of symptoms.

To follow this schedule your doctor needs to prescribe you both 5 mg tabs which you can break in half to make 2.5 mg and 1 mg tabs that you can use to go up or down by smaller amounts.

And you should expect that it will take you another 6+ weeks to completely wean off pred.

Remember that you may be having aches and pains because you are weaning - this is common. That may be making you feel a little bad. And it's OK to be anxious. It's not the end of the world if you have some CD symptoms return as you reduce your dose.

I would check with your doctor and see what he wants you to do if mild symptoms return following a dose reduction. You could wait a day or two and see if they persist or get worse before you go back up.

The endocrinologist told us that, if CD symptoms returned when a dose was reduced, that a return to the previous dose level for 2 weeks was a good idea and then start weaning again and go slower - perhaps only 1 mg a week reduction in dose.

In my experience, anxiety alone can make me sick to my stomach and give me D. Don't know if it works that way with you but maybe it would help if you found some way to distract yourself or reduce your anxiety. Talk therapy can be really effective for this kind of anxiety as well as relaxation exercises/meditation.

Hope you feel better soon and your wean goes fine.

My daughter tapered by 2.5 mg weekly when she got down to below 20. It makes sense to be a little scared, as the closer the taper gets to zero, the more problematic it is. 

Once I get to 10 mg, I have to taper 1 mg at a time, or I really feel it.  And, as many times as we've tried to get me completely off of it (on it for crohn's related arthritis), we've never been able to keep me under 10 mg for long.  So, if you try it and start to flare, see if the dr will let you go back up for a little while longer.  We've been going back and forth on the dosage for almost 2 years now but I've been on it the whole time, and the only chance I will get off of it anytime soon is if my GI allows me to stop Humira and try Enbrel instead.  Should find out after the results of my capsule endoscopy tomorrow come back. 

rls, I see an endocrinologist for thyroid disease and she has never said anything.  With the battery of tests she's done over the years on my thyroid, would she have tested for that already?