HealingWell
Search Close Search
☰

Pred taper/withdrawal help

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/24/2019 8:10 AM (GMT 0)
Hi all,

So I'm finally managing to reduce pred after being on it just over 5 months. about a month and a half ago I couldn't get lower than 30mg without my symptoms returning but I'm now at 17.5mg and doing OK. I've been on 50mg 6mp for 6 weeks and had my loading dose of humira 9 days ago (second one will be next week). I'm also using budenofalk enemas nightly.

I've decided to taper by 2.5mg/week on pred and wondering if this seems sensible? My consultant wanted me to just drop by 5mg/week to get off them ASAP but I'm concerned about going too quickly. Since I dropped to 17.5mg on Sunday I have been feeling achy and flu like, could this be from dropping? I'm starting to worry about withdrawal symptoms because I've been on them so long.

Can anyone advise/reassure me?

Thanks everyone smile
Posted 4/24/2019 12:24 PM (GMT 0)
Hmmm I'd agree with you on a bit more caution on tapering. Humira takes 6 weeks or less to work (you're 9 days in) and 6mp takes 3 months to work (you're at 6 weeks). I'd wait another week or two before getting much below your current level.

As far as pred tapers go, being between 10mgs and 20mgs is the dangerzone of tapers, where most of us flare again. 2.5mgs seems logical, I did the same.

You generally want a fat-tail, the closer you get to zero. Meaning, go slower and smaller drops as you get closer to zero. I was cutting my 2.5 tabs in half on the last 5mgs or so.

As far as withdrawal goes, it is generalized aches and pains, and fatigue that you'll experience.
Posted 4/24/2019 2:19 PM (GMT 0)
I've always had more luck going slowly, although you are taking both a biologic and 6 MP which are powerful anti-inflammatory drugs.

You will probably have to slow down even more once you get below 7.5 mg since it will take a while for your body to start making cortisol again. Be patient, it will take a some time to feel normal again. Hopefully your G.I. doc has a lot of experience with pred tapers.

And yes, at 17.5 mg, you are probably experiencing some early withdrawal symptoms which will intensify as you continue to drop.
Posted 4/24/2019 3:12 PM (GMT 0)
Thank you both. No my GI doc doesn't seem very good. Not giving me much advice and just saying to get off as quick as possible... Which I don't think is helpful. The last thing I want to do is taper off quickly and for my uc to reflare and to feel awful. Do you have any advice on how to deal with the withdrawal symptoms?
Posted 4/24/2019 3:16 PM (GMT 0)
Its one taper but two reasons.

Down to about 10mg (or maybe 7.5mg) slowness is to allow you to gauge that other meds are doing the job. If symptoms return during this part of taper, it means you started tapering too soon (your meds need more time), or you meds are not strong enough to do job without pred. Nothing about the speed of the taper is strongly related to symptoms returning - it is all about whether the other meds are doing the job. Some people who begin to taper before meds fully kick in, do have to go down in proportion to the degree other meds have kicked in.

As you taper down to 5mg and below, the reason for the taper includes allowing time for you body to wake up and make cortisol. Going slow here is not related to UC symptoms, because you don't get this low unless meds are doing the job. If you remove the low levels of pred too fast you could become cortisol deficient for a short time if your body does not wake up fast enough. This is associated with "withdrawal" symptoms, but they are really better called "cortisol deficiency" symptoms.

Some people whose body is very stubborn to wake up are switched from pred to hydrocortisol because it has more of a 1-to-1 relation with cortisol. Pred has a 4-to-1 ratio with cortisol. The GI then manages the hydrocortisol taper with more precision (less cutting pills in half).

good luck
Posted 4/24/2019 3:24 PM (GMT 0)
Pred withdrawal symptoms cannot be mitigated. Generally you're talking minor aches and pains and a bit of milder fatigue. Sometimes they last a day or two when dropping your pred dosage, but should not be a constant thing.

You don't want to be much below 20mgs of pred UNTIL you know your maintenance meds are working. If you said "I'm starting to feel better on humira and 6mp, and have less flare symptoms now," then that would be a good time to start reducing pred below 20mgs. If you haven't yet noticed a difference from taking humira and 6mp, then it is a bit too soon to march ahead with a taper of pred.

Generally, it's much, much better to be the turtle, rather than the hare in the prednisone taper race. As the hare is going to suffer a lot of withdrawal and possibly flare again for being so hasty on the taper before his/her maintenance meds have kicked in.
Posted 4/24/2019 3:32 PM (GMT 0)
Thanks John. It's hard to say but something is definitely working as about 6 weeks ago I was on 30ng pred and when I went down to 25mg, I immediately bled the next day and had pain. At the moment I seem stable having 2 bms a day with no blood and have very little discomfort. But who knows. Today is my 4th day on 17.5mg and nothing has changed since 20mg except the aches and pains.
Posted 4/24/2019 3:56 PM (GMT 0)
Every GI i worked with has asked me to taper pred faster than i wanted to (and i ignored their advice and went more slowly). 2.5mg per week is reasonable. When you get below 10mg you may consider going even slower, e.g. 2.5 mg every 2 weeks. I would know within 3-10 days if decreasing pred was making my symptoms worse. You don't need to be in full remission before you drop each time since if the meds are working they will take care of that, but you should avoid letting symptoms get worse.
Posted 4/24/2019 5:34 PM (GMT 0)
I am also in process of a prednisone taper and decreasing by 2.5mg per week until I hit 10mg. I am currently 3 days in at 17.5mg and doing well so far. From what I have read online, 2.5mg reduction per week is the suggested rate when decreasing from 20mg to 10mg and once you hit 10mg, a 1 to 2mg reduction is suggested. I, too, would prefer to take it slow and reduce the chance of issues with reoccurrence of UC related symptoms. My GI didn't provide taper guidance and I initially went too fast with 5mg reductions and had some bleeding appear. I had to jump back up and restart the taper, once things were under control again.
Posted 4/24/2019 7:04 PM (GMT 0)
The pace in which you taper pred is entirely based on the cumulative time you've been on pred.
  • After 10-months of pred, I had to do 2.5 mg drops, then 1-mg steps at the end.
  • After a 2-month course of pred, 10-mg drops high up are fine, and 5-mg drops are fine at the end.
  • After 2 week course of pred, no taper is needed at all.
Going slow doesn't guarantee you won't flare (you will flare regardless of pace when your maintenance meds aren't sufficient). Rather going slowly is a way of reducing the odds of withdrawal, and easing withdrawal symptoms. As the longer your adrenals have been asleep while on pred, the harder it is to reawaken your adrenals during a pred taper.

And you do not want to be on very low dosages of pred until your new maintenance dosages have been given a reasonable amount of time to work.
Posted 4/24/2019 7:33 PM (GMT 0)

iPoop said...
Going slow doesn't guarantee you won't flare (you will flare regardless of pace when your maintenance meds aren't sufficient)


Going slow doesn't prevent a flare but it reduces the severity. I flared up so many times when trying to wean off pred. When I did big jumps I had a more catastrophic return of symptoms than when I did it slowly....the latter helped me to feel the effect of each decrease, so that i could stay on top of any flares.
Once it became clear that pred would not put me in remission, I was always encouraged by docs to take the lowest dose that I could tolerate b/c of side effects.
Immunosuppressant drugs can put you in remission on their own. Pred mostly helps to make the transition period more comfortable.
Posted 4/24/2019 11:10 PM (GMT 0)
I was lucky enough to be a patient of Dr. Carr in Vancouver when I was first diagnosed. He has been recognized posthumously as one of the best GI docs in Vancouver, and even had a wing of the hospital named after him. Unfortunately he died of brain cancer right when he turned 65. Anyways he was the one who told me that most people who have problems tapering, have those problems because they tried to taper too fast. That is advice I have never forgot. It is so true.
Just to be argumentative smile I think it's quite possible to have a recurrence of symptoms if you taper too fast that you otherwise would not have had. It takes your body some time to adjust to the lower cortisol levels, and some of the withdrawal symptoms mimic UC symptoms. The other reason I believe this is I have had a recurrence of symptoms during a fast taper that did not recur again after going back up and re-tapering.
Posted 5/2/2019 8:14 AM (GMT 0)
Thanks everyone for the advice. Just an update: I'm now down to 15mg pred for past 5 days and had my second loading dose (2 shots) humira on Monday.

I'm doing OK but struggling not to worry over every little symptom. At the moment I'm mostly having 2bms in the morning with no blood or mucus but it's a little looser than I would like. I'm not sure if this is of major concern? I'm having a little discomfort/pain but nothing compared to how I was a few months ago.

Has anyone got any experiences of humira and how long it takes to notice a difference? I'm worried it's not going to work. I'm still on 50mg of mercaptopurine which I've been on 7 weeks. Am waiting for results of blood test to see if the dose needs to be adjusted.

Thanks everyone
Posted 5/2/2019 12:17 PM (GMT 0)
I was at 20-mgs of pred when starring remicade. I noticed my first positive improvement from remicade at week 3, and a much bigger improvement at week 7, and I was off of pred by about week 8-9. I had a slow, steady improvement thereafter until I reached a remission a number of months later. Similar meds. Some respond quicker while others respond slower, dependent on how bad the flare is and how much damage has been done. Humira doesn't directly heal you, rather it just stops the immune attack and your body is then left to heal itself once the attack ceases.
Posted 5/3/2019 7:39 AM (GMT 0)
Thanks John. I just hope the humira will eventually kick in. It's just frustrating as I guess I'm impatient and want to see improvements straightaway...

Do you know how humira works exactly and why it takes time to work?
Posted 5/3/2019 6:05 PM (GMT 0)
It takes time because it takes time for your gut to heal. The worse off you are, the longer healing takes.
Posted 5/3/2019 8:17 PM (GMT 0)
Humira is a TNF-alpha blocker. When your immune system wants to attack an area, tnf-alpha proteins are sent as messengers. Humira blocks that battle cry and stops the rallying of WBCs. Humira should stop the battle cry which enables your body to begin internal healing. How long it takes to heal depends on the extent and severity of your inflammation. Some feel better fast, others take up to 6 weeks for an initial response.

Humira works for about 65% of us, the majority but not all.
✚ New Topic ✚ Reply