Prednisone Q and A

[MarkyB86]

prednisone Q and A

Q: When tapering off of prednisone, does your body tend to do weird things?
[woke up at 4am this morning with severe knee pain in both legs, cant barely stand. took double dosage of liquid tylenol at 5, no relief. its 7:21 am now and still have the pain. Just took todays 30mg dosage. This is only the second day of 30mg, was 40 mg but 20 in the morning and 20 in the afternoon.]

 

[MarkyB86]

around 8:15 the pain went away for about 45 minutes (I guess my body got the steroids it wanted) but at 9:15 pain came right back. called my dr. the nurses said they've heard of it before but are going to check with the dr. and call me back. It's quite upsetting I thought things were OK, yesterday dr. told me I was going to be just fine and didn't think It was bad to start weaning... ughhhhh. Thanks for the quick response peaches!

 

[MarkyB86]

Right after I wrote that, BAM DIARRHEA. I'm guessing 30mg just isnt enough, and my body's done with the med. I can't believe this. Didn't think it would be so instant like that. Sorry I am a whiner, but I think I got that from my family.

 

[saidinstouch]

going from 40->30 shouldnt lead to your crohns coming back since they are both extremely high doses (your body makes about 3-5mg of cortisol a day when not on pred). You are probably experiencing the typical rebound we all go through when you taper too fast and as stated above will need to slow down. Pred changes a lot of things in your body at the doses we take it at (this is what I study for my ph.d) so lowering the amount available really does some funky things to us. I would recommend three things: 1)slow the taper to 5mg per week, a lot of us can do 10mg a week down to around 20 or 25mg, but not everyone can; 2) go back to 40mg for a couple days and restart the taper at 5mg a week; and 3) split your dose evenly until you are down to 10mg a day (i.e. only take half in morning and half a night 15/15 for 30 or 20/15 for 35.

Hope that helps!

 

[imisspopcorn]

I will recommend something silly, Drink pedialyte. You might have low potassium. Mike used to get severe cramps while on pred. I know it is your joints that are hurting, but this cant hurt.

That is a great suggestion....pedialyte is much easier on the gut compared to gatorade.

 

[saidinstouch]

On the same note as to what Kimberlie said, for me it wasn't a potassium issue, but rather a calcium issue. I'm not sure how low calcium lead to cramps, but changing my calcium to a liquid source helped a ton.

Another VERY important note DO NOT TAKE POTASSIUM WITHOUT TALKING TO YOUR DOCTOR FIRST. Or take extremely low doses of it. The FDA limits each pill to 3% of your daily value for a good reason, if you try adding it only take 1-2 pills in a day if you don't talk to a doctor for your own safety. Potassium overdose leads to heart damage.

Also, you are taking a calcium supplement while on the pred right? You should be getting 1200mg a day or more and if you aren't then add it immediately. Don't get the big tablets either, smaller tablets are easier to digest and more orally available. Liquid calcium is the best form though and I suggest you look into that. Bluebonnet is the brand I use, but others are available too.

 

[bella_sky]

Omygosh, so glad I read this thread. Just wanted to say thanks for posting, they just started me on 40 mg of prednisone to counteract BAD joint pain from Remicade reaction and/or A..... Spondylitis (??) cant remember what its called. Anyways, have a great weekend!

 

[MarkyB86]

Actually I don't take a calcium supplement or potassium. I do drink alot of ensure and I have a good amount of milk every day. My dr. said to take 1-2 200mg pills of motrin every 8 hrs when the pain starts, so I got childrens motrin and just took 400mg this morning and it actually stopped the pain which was cool.

 

[MarkyB86]

Thank you!

 

[MarkyB86]

Pretty sure the motrin just made the pain worse because i think it was making my left leg swell up. I'm never taking it again, it doesnt help. I dont know why the doctor said to take it. I got the chewable calciums with vitamin d&k (there for ladies but I dont care) I'll take 3 of those daily with my other gummy vitamins, and i got some ace knee braces. I think I will get through this. I dont want to go back up 10mg on the pred and do this over again when i come back down half a tablet. Today the pain was the worst its ever been, from 330 am to 830 am I thought I just wanted to die. at 830 I had (READER DISCRETION ADVISED) The largest bowel movement of my life, im talking you cant see any of the toilet beyond the waters.... and when I stood up, pain is gone. It's back now but that made my day. I slept from 840-11 and that's enough sleep for the steroids I guess. what a day....
We'll see how it goes from here on out. Kind of skeptic on my drs advices that I could get in the future now. However I may not be able to even go to them soon, insurance doesnt cover that much( Ididnt know how this works, they pay a little and then the dr. sends you a big bill for the rest )

 

[MarkyB86]

Mark, I hope this helps for the future. If your dr recommends more progressive drugs, a lot of them offer assistance as far as the cost of the treatment. Remicade, Humira all have programs of their own. I believe Cimzia does also. Maybe you can bring this up to your dr. so you can get some relief and not be on pred. I hope your Dr. is interested in helping you do these things to bring you a better quality of life.

That's good to know!! Thanks! Dec 1. is my next appt and im supposed to be done with prednisone by then. I'm gonna take 20mg of it starting on the 13th until the 1st. then we discuss what comes next, he didnt really have any input on what it could be other then "we have options"

 

[Chuck2008]

Motrin and other anti-inflammatory drugs (NSAIDs) make Crohn's symptoms worse and have been known to cause Crohn's flare-ups, its common knowledge in the medical community. I'm surprised your doctor suggested you take it!

 

[MarkyB86]

I had my monthly appointment yesterday and when I told him motrin made me sick, he didnt even flinch like thats ok or something.
anyway he kept me on pred until jan 12, and put me on 6mp 50mg a day. so pred will be 3 1/2 months when I am done :-(

 

[imisspopcorn]

Good luck Marky...Three months of Pred. is really a short time for many IBD people. Are you having any other problems with it besides the joint pain. The joint pain can be from the Crohn's, not necessarily Prednisone.....I hope the 6mp helps you. Does tylenol help you at all?

 

[saidinstouch]

Since it sounds like your doctor is somewhat incompetent, you have to be careful with the 6mp. Did he have you take a blood test before telling you the dose or did he just prescribe it? We all metabolize the drug differently and a blood test is needed to determine the necessary dose to get a safe and effective level in your blood. The reason this is so important is the drug can do serious damage to your liver if I'm not mistaken and you can easily get too much of it if your doctor is telling you a dose without the proper information. It isn't something you can determine just by gender or body weight, so you really should consider the blood test to be safe (though it will cost some money).

Aside from that, regardless of whether you can afford the test or not or if you have had the test or not, you need to watch out for certain symptoms that your body isn't handling the drug well. These symptoms are nausea and fever primarily and darkening of the urine can also happen. When I tried this medication, within a couple days I had a fever over 100 and was throwing up. I stopped the medication and improved drastically. Please be careful taking this medication. It can work well for many, I'm just concerned your doctor may not be looking out for your best interests.

 

[mwb3779]

I'm on 100 mg of 6 mp a day. So far most people I know are only on 50 mg a day. Any idea why mine might be higher? I know they did do some blood work in the hospital.

 

[shazamataz]

Could be your size Mike? Also different people have different abilities to metabolise these things and so you may be able to handle more than someone else.

 

[mwb3779]

Well I'm 6'4" and weigh around 265. Is that pretty big?

 

[Sue-2009]

Been tapering off prednisone, down to 25 mg, pentassa & mesalmine (I have a jpouch--no colon) I notice some extra pain...sound normal? Sound like the pentassa not working? Whats the thoughts? Sue

 

[Peaches]

Mark - that is a pretty good weight yes - but I'm thinking I've seen other people at that dose as well, might be wrong on that. The important thing is that you seem to be tolerating it well and your blood work comes back ok.

Sue - I'd watch the pain. If it keeps up over the weekend, I'd call your doctor on Monday and ask. Maybe they will slow your taper. Hopefully it will just be a blip for today and you can keep tapering.

 

[imisspopcorn]

The max dose is 5mg/kg /day..Maintanence is 1.5mg-2.5mg/kg/day
You are roughly 120kg...
Your doc may even up your dose if it is not working. Like Peaches said, it all depends on how you are tolerating the drug.
At one point I was on 150mg of imuran, and I was at my lowest wt. of 115lbs. Different people can tolerate different things.

 

[saidinstouch]

Body weight is only one factor in determining dose, since a larger person needs more drug to reach the needed concentration just like a smaller person needs less of the drug to reach the same concentration. What is more important for 6mp is how you metabolize it as we all metabolize it at significantly different rates and that leads to the ability to have large variation in the concentration we keep in our blood since the half life can be higher or lower than "average". The blood work helps tell you the expected metabolism level and what dose you should start with. You can tweak it from there with your doctor, but be good getting the bloodwork done and watch for fever and nausea symptoms.

 

[mwb3779]

Thanks