Tapering off Prednisone and Effects?!

[Momof2EW]

Afternoon all!

So, a few questions for those who have had to taper off the prednisone and what your side effects were??? I have been on the steroids since July now and the highest was 180mg through my IV at the hospital... now my GI has me coming down 5mg a week... since I have been home from the hospital September 19th, I was at my highest dose being 60mg. He just started to taper me this past month... yesterday was the first day at 15mg.

Saying that I took my dose in the am and by yesterday afternoon my face was blood red and I started back all the twitching and shakes I get normally. So, last night they didnt get any better. I could barely eat dinner I was shaking so bad. I took my Ambien, went to sleep, woke up and my stomach was killing me, was on the toilet for about an hour on and off. I have had to go alot today, not really the "D" everytime but close to it.

Anyways, so i guess Im asking, Is is normal to have all my symtoms to somewhat start coming back again? Will the shaking continue, I go down to 10mg next Monday and my GI wants me stay on that until Nov.17th when I see him again. I dont know if Im doing this bad already 2 days into the 15mg then Im scared 10mg may cause a major problem. Is this considered a flare up? Im so new to this, I just need some guidance or something. I dont know if I should call my doctor or just wait it out and see if it improves. I just also did my Humeria injection last Wednesday, I dont know if that helps the situation any or not.

Any advice, tips?
Thanks so much!
Elise

 

[Babs1957]

You are tapering from 60 to 15??? That seems to be quite a jump downward.

I've heard some doctors take it really slowly, especially if a patient is having problems, like reducing by 5 mg increments when taking less than 40mg of prednisone, 2.5 mg when on 20 mg of prednisone, and 1 mg increments once at 10 mg.

You may want to call your doctor and see if s/he wants to slow your taper.

Good luck!

 

[Momof2EW]

You are tapering from 60 to 15??? That seems to be quite a jump downward.

I've heard some doctors take it really slowly, especially if a patient is having problems, like reducing by 5 mg increments when taking less than 40mg of prednisone, 2.5 mg when on 20 mg of prednisone, and 1 mg increments once at 10 mg.

You may want to call your doctor and see if s/he wants to slow your taper.

Good luck!

No...no. Sorry I didnt write that correctly it seems. I started on 60mg.... then he has worked me down slowly... it was like 50 for 3weeks then 40 for 2 weeks and then so on now that Im under 20mg it has been 5mg down each week. And now that Im at 15mg, Im showing bad side effects again.

 

[Babs1957]

Whew...that's good. I'd still call you doctor if side effects continue to trouble you.

 

[Squadinho]

I started on 40mg and am reducing by 5mg every 7 days. I'm currently on 10mg and starting to flare, so yes it is normal to start flaring as you're coming off Pred.

However, I've really had direct side-effects to Pred or withdrawal symptoms so can't really comment on that.

 

[Astra]

Hiya Elise

So from July-Sept you've tapered from 40mg to 15mg? That is quick!!
I was put on 50mg back in January and finished in July, then all the symptoms came back so I tried Entocort for 2 months, that didn't work neither. I tried the Pred again end of August, at 30mg and I finish next week, that's nearly 10 months on and off this year. I only tapered by 5mg every month, not week.
I believe the Pred hasn't finished doing it's work with you, and I would chat to the doc, maybe he can up it up? Then start tapering again?
BTW, I have no symptoms now, no pain, no D, no nothing, (except a bit of joint pain) I'm hoping I'm in remission.
hope you can get there too hun
xxx

 

[NicoleKS]

I've been tapering down by 5mg a week. I haven't noticed any side effects. But then again Prednisone didn't do a darn thing for me in the first place other than make me gain 20 pounds and break out with acne. =( And the weight and acne haven't gone away yet.

 

[Momof2EW]

Hiya Elise

So from July-Sept you've tapered from 40mg to 15mg? That is quick!!
I was put on 50mg back in January and finished in July, then all the symptoms came back so I tried Entocort for 2 months, that didn't work neither. I tried the Pred again end of August, at 30mg and I finish next week, that's nearly 10 months on and off this year. I only tapered by 5mg every month, not week.
I believe the Pred hasn't finished doing it's work with you, and I would chat to the doc, maybe he can up it up? Then start tapering again?
BTW, I have no symptoms now, no pain, no D, no nothing, (except a bit of joint pain) I'm hoping I'm in remission.
hope you can get there too hun
xxx

Hey hun,
Yes, it was around 60mg when I first started after this last hospital stay which was Sept. 14th ish of this year..... and then I was at that for like a week or two and then 50mg for about the same time and then I did 40mg then I think I kinda flared when we started dropping 10mg for those 2weeks. I went from 40 to 30mg and that hit my body hard, then it seemed like it got a back normal and then Ive gradually came down since 30... to 25, 20, 15(now). I think I am going to call my GI tmrw and tell him Im starting to either have pred withdrawls kicking in or its the Crohns flaring up real bad.

Thanks for your response.

Elise

 

[Momof2EW]

Whew...that's good. I'd still call you doctor if side effects continue to trouble you.

I am going to give him a call tmrw I think... Thanks for your response

 

[Momof2EW]

I started on 40mg and am reducing by 5mg every 7 days. I'm currently on 10mg and starting to flare, so yes it is normal to start flaring as you're coming off Pred.

However, I've really had direct side-effects to Pred or withdrawal symptoms so can't really comment on that.

I thought...well knew.. that you have some side effects. It just kinda bothered me some.

Thanks for the reply

 

[vonfunk]

for me whenever I've tapered down I was told if I started flaring to go back up to the previous dose I was on. So if I started flaring at 15mg, immediately go up to 20mg, and then make an appointment.

 

[acg101]

Hi Elise, Sorry to hear all the troubles you are going through AND having two kids to take care of.
I must say that I had the worst side effects from the Pred, while taking it and coming off it. In my case I startedlike you with 180 mg at the hospital and tappered off. Eventually I took myself off it (not recommended) because I could not deal with the side effects of tremors, agitations.. just not feeling right.
I also took Ambien 15mg per night and Diazapen .
luckly for me my Doc also did not like the Pred.
take care,

 

[MADiMarc]

Dear Elise,
I would talk to the doc about the Pred. If it is doing nothing for you at the high doses, then I would seriously talk to him about something else perhaps. Prednisone worked well for me but I was on it on and off for so long that I have severe ostoperosis (spelling?). I am 44 and have the bones of a 90 year old. It is from the Prednisone. I do not for one instant regret taking it as it saved my life on numerous occasions. However, if you get no relief from it, what is the point??
Just my two cents.
Best of luck to you and wishing you a pain-free and shake-free day,
Michele

 

[Momof2EW]

Thanks for the replies! I am doing much better coming off of it now, I am now down to 10mg until I see my GI on the 17th of this month. I have learned to deal with the shakes and the mood swings, but I understand that it is also just part of coming off the pred. I am excited to get off this stuff and hopefully the Humeria will keep doing its job by keeping me well and no flare ups.

Thanks again for the help you all