Uh oh, am i in prednisone withdrawal?

[cheeky]

uh oh, am i in prednisone withdrawal?

when should i be concerned enough to go to the hospital?

it's been 5 days of me being off of prednisone, and the symptoms are getting worse.... here's what i've been experiencing:

- bad headaches, feeling like i have kind of a sinus headache but also sometimes a sharp pain in the back of my head sort of on the side... the headaches feel like pressure in my head, it's difficult when i have to bend over or lay down, makes me feel like i'm gonna pass out from the pressure.... i normally do not get headaches at all.

- joint pain in my knees, also my shoulders are very sore, all the way up my neck... and i have soreness in my body in general, sometimes this includes my lower back

- occasionally sudden sharp yet not severe pain in my chest (but this is not consistent or i'd be more scared)

- my fatigue is back

- last night i woke up around 1 am and was vomiting




i may have been lucky while i was on the pred, cuz i didn't get too many side effects (nothing severe), but maybe my body can't handle the pred leaving my system...

has anyone else experienced this? i heard the first few days off of pred can be pretty brutal.

please let me know.


oh and i went to the walk in clinic and the doctor checked my blood pressure, and it 's fine...and he checked my sinuses which are fine... and he said i'm ok... he could give me headache pills if i want blah blah... if i'm 'ok' i shouldn't be feeling like this.

 

[cheeky]

How fast did you cut out the Pred? Did you taper down or did you go "Cold Turkey"?

Last couple of times I got off pred, I wasn't bad... Fatigue and headaches, but not too uncommon, for me.

If you go from a few pills straight to none, it can be dangerous.

i did the tapering... but the directions told me that after the 5 mg taper, i could stop... i see that some people continue to taper down to 2.5 mg but that's not what was recommended for me.

and i wasn't on pred for that long (just under 2 months).

maybe i should mention that i'm also on Imuran... but i don't think these side effects are from Imuran.... i really suspect it's withdrawal from pred.

maybe some people are just more sensitive to pred leaving the system than others

 

[cheeky]

i will say at the moment, i feel much better... not 100% but the headache isn't there, just a runny nose and my joint pain isn't as bad. hopefully it only got worse before getting better and i'll continue to feel better.

 

[PENWESTERN]

Hello,

What you describe sounds familiar for people who have told me they ache after Prednisone. You could see if you can drag the taper out a little longer. I have had horrible headaches and stiffness but it goes away in a couple of days. Tylenol helps me.

I doubt it is the Imuran. I am on that too and feel nothing.

 

[Colt]

I've been through an addisonian crisis twice (what it's called when you have acute adrenal insufficiency) and was very prednisone dependent. Tapering took forever but I still found success dropping by 5mgs including at the end when I did 10 days of 5mg every other day.

It doesn't really sound like an addisonian crisis to me. It could still be minor withdraw issues but nothing dangerous and it will go away as your body readjusts. It's when your blood pressure and pulse slow down that you need to head for the hospital or urgent care to have a cortisol level done. If that level's too low they'll give you some prednisone and you'll probably have to taper some more.

An addisonian crisis will leave you weak, confused, unsteady on your feet and generally clumsy, it'll cause tremors (hand shakes), you'll pee like a maniac, be less able to speak clearly and articulately, etc. In a lot of ways you'll look like you're drunk to the people around you.

On one of those instances I was at a high dose and simply forgot to take it that morning at 4AM. I went to work and by noon I couldn't successfully put on a pair of gloves or assemble a butterfly needle. Luckily my wife showed up with my prednisone just in time. If she'd been unavailable I'd probably have had to go to the ER to get some since my doctor hadn't put any refills on my prescription and he's a little hard to get ahold of on that short of a notice.

The other time I'd been tapered too fast. From 40mg to 20 in 2 weeks. I ended up just going back up to 30 on my own until I could see my doctor on Monday and then we set up a new, slower taper.

 

[cheeky]

I've been through an addisonian crisis twice (what it's called when you have acute adrenal insufficiency) and was very prednisone dependent. Tapering took forever but I still found success dropping by 5mgs including at the end when I did 10 days of 5mg every other day.

It doesn't really sound like an addisonian crisis to me. It could still be minor withdraw issues but nothing dangerous and it will go away as your body readjusts. It's when your blood pressure and pulse slow down that you need to head for the hospital or urgent care to have a cortisol level done. If that level's too low they'll give you some prednisone and you'll probably have to taper some more.

An addisonian crisis will leave you weak, confused, unsteady on your feet and generally clumsy, it'll cause tremors (hand shakes), you'll pee like a maniac, be less able to speak clearly and articulately, etc. In a lot of ways you'll look like you're drunk to the people around you.

On one of those instances I was at a high dose and simply forgot to take it that morning at 4AM. I went to work and by noon I couldn't successfully put on a pair of gloves or assemble a butterfly needle. Luckily my wife showed up with my prednisone just in time. If she'd been unavailable I'd probably have had to go to the ER to get some since my doctor hadn't put any refills on my prescription and he's a little hard to get ahold of on that short of a notice.

The other time I'd been tapered too fast. From 40mg to 20 in 2 weeks. I ended up just going back up to 30 on my own until I could see my doctor on Monday and then we set up a new, slower taper.

thanks colt, i was hoping you'd reply in this thread... i did look up the adrenal crisis symptoms, and even though i have a few, it's not THAT bad...and the doctor at the walk-in clinic checked my temperature and blood pressure and said i was fine.

but i spoke too soon when i said i was 'feeling better', yesterday during the day i felt pretty good, the headache wasn't really there... but i went to bed last night and it's like immediately the headache was back.... i was having the shakes and at around 1 am i started vomiting repeatedly... this time i had a bit of stomach ache with the urge to vomit.

and of course my shoulder joints were very sore.

also, i'm noticing that i'm getting erythema nodosum again... on my left ankle.

thankfully i see the rheumatologist this tuesday.

gawd i wish this would go away already.

 

[cheeky]

Hello,

What you describe sounds familiar for people who have told me they ache after Prednisone. You could see if you can drag the taper out a little longer. I have had horrible headaches and stiffness but it goes away in a couple of days. Tylenol helps me.

I doubt it is the Imuran. I am on that too and feel nothing.

yeah but i really don't wanna go back on prednisone... especially seeing how strong it is and the way it's messing me up now because i'm off it.

i'll try to rough it out and hope to get better soon.

today i'll just eat soup and melba toast today.

 

[Kittee]

Yep I just went down to 2.5 yesterday and went to bed with a headache and woke up with it and have gone all day with it...

see the pattern here? lol

 

[Colt]

Normal cortisol levels are generally around the equivalent of 3mg per day of prednisone. If your adrenal gland hasn't completely woken up yet you can start getting some problems with that 2.5mg dose but 5mg and below it should be waking up. It's just a matter of how long it's going to need to get to full strength.

If you really want my opinion on something feel free to PM me and point me to the thread so I'll make a point of reading it when I'm on here. I'm not reading and responding to as many threads as I used to since my health has kind of tanked thanks to lack of treatment. I've been spending more time laying around in a stupor doing nothing and less time on the computer researching and typing up long answers.

 

[mRae85]

I am on 40 mgs a day and I had a really bad time not too long ago... bout 2 weeks ago actually. It all began with my old Dr, i called her a week before my script ran out to remind her to refill it... she was apparently too bz... 3 weeks later is when she refilled it.... I had horriable headaches and i broke out in a rash like... I cant really explain it except to say I was one big red dot basically... my skin hurt and itched at the same time, I'd want to scratch the itch but then as soon as I'd touch it i felt like my skin was gonna fall off in chunks! Just having on cloths hurt! Needless to say I got a new Dr after that, had my first appt with him just 2 weeks ago and I go back on the 16th to see him again. Here is the ironic part that looking back on I can laugh at.... finally when the Dr refilled the script, she said to me "you can't just stop taking this, it can hurt you" ... at the time i felt like going completely off the deep end as I am sure you can imagine, but all I could do was let her know I had called everyday for almost 3 weeks :yfaint:

over all, week 1 I got headaches right away and just felt wierd by day 5 I noticed little red bumps and I not only itched but i hurt... by week 2 and I'd say day 4 of week 2 I was going completely out of my mind!

Also I forgot to mention... a side effect of the side effect is that once I got back on it again, i got super sick with bronchitus... go figure... I am sure someone around here has been through at least one immune crash due to thier meds and I am just now getting better. A simple cough can become anything no matter how many vitemins ya take when your immune system dont wanna work right

 

[fenway1971]

this is a great thread...i'm getting nervous about potential withdrawal as well.

went from 40 to 5 over 3 months (no issues) then back to 20 when i flared. been at 20 for 3 months and begin tapering in two weeks. afraid the extended stay on 20 may make withdrawal not fun.

 

[Colt]

Other than when I withdrew entirely too fast or forgot my pills the tapering experience was fine for me. No problems.

 

[cheeky]

just an update, it's now been 13 days since i've been off of pred, i haven't puked for the past 3 nights...and for the past 2 nights, my headaches have pretty much faded.

i still have bad muscle aches in my shoulders (at my rheumatologist appt i found out that the shoulders are muscle pain not joint pain) and my knee joints are pretty sore after long periods of sitting but tolerable nothing severe...

but my erythema nodosum is TERRIBLE! it looks like someone beat the crap out of me lol... but as of today, i noticed a tiny improvement, the swelling went down a bit on my legs... i think it's the Imuran starting to kick in now.

i'm still getting a chest pain, but i think it's my upper back coming through.

my eyes are better now, i had some inflammation in my left eye, but my prescription eye drops have helped...so i predict that'll be compeletly better in another couple days.

but all this time, my stomache has been tolerating food... no cramping at all. so i'm glad....and today my appetite is back again... the past few days it was gone.

 

[mRae85]

Glad to hear you are doing better, I know all too well that stuff sucks!

 

[cheeky]

update: 16 days off pred... headaches haven't returned, still no vomiting, joint pain in the knee is pretty much gone...the muscle pain has calmed down quite a bit, i was able to sleep without muscle relaxers/pain killers... my eyes are cleared up now thanks to the prednisolone eye drops, (eye specialist confirmed today that my eye is good again)...

only things bugging me at the moment - my nose (runny/congested/bloody - see other thread about sinuses), my erythema nodosum (a bit better but hasn't cleared up yet) and very small hints of discomfort and gas in my stomach that tell me a flare may be coming soon... i have to be very careful.

thanks to everyone for replying.

 

[cheeky]

final update - so i'm happy to say, my withdrawal symptoms are all officially GONE! it's been a few days now... no more headaches, no more joint or muscle pain, no vomiting/nausea... my appetite is back... my eye inflammation is gone (thanks to eye drops), my EN on my skin has finally calmed down and in the process of healing...

right now i feel good... thought a flare might've been on it's way a few days ago because my stomach felt sort of tight, but lately my stomach has been fine and comfortable... seems to be that the Imuran has finally kicked in... i've been on Imuran for just over 4 weeks... currently my only issues are sinus problems (which i think i'll go get checked out and hope to clear up) and fatigue.

just thought i'd share and give some of you hope...

 

[fenway1971]

cheeky,
thanks for posting. I just started tapering last week and migrating to 6-mp. Have been on pred since Sept and on 20mg since xmas. So, I'm anxious to see how I fare. Today I was completely beat.

 

[mRae85]

woohoo, some good news around here

Glad to see you have made it! I have been tapering now for a week and I know the flair is getting stonger, the pred only slowed it down so I know Im in for it soon, but I'll be on something else soon also so hopefully I won't crash and burn too bad.

 

[fenway1971]

I started experiencing symptoms of withdrawal last night and today. Severe fatigue and woke up with headaches. That's going from 20mg to 15mg having been on 20 for 3 months.

 

[cheeky]

mRae85, good luck to you... hope you don't have a bad flare and your other drugs do the job right.

fenway, sorry that you've started to get the withdrawal... how long is each taper period for you? mine was only a week per taper, maybe if you're tapering for a longer time, it may help you... hope you feel better soon.

 

[Colt]

Wow, that's pretty impressive dependency for such a short period and such a low dose. Did you have any kind of hormone issues before this?

 

[fenway1971]

Colt - not sure if your comment was directed at me or not. I've been on 20mg since xmas. My headaches, etc. lasted for about 2 days. Today I feel great. I think it had more to do with length of time on dosage than anything else. I had tapered from 40mg to 5mg from Sept - Dec but then reflared and had to kick up pred back to 20mg.

MRAE - thanks. i'm tapering 2 weeks at 15, 2 weeks at 10 then a week each at 7.5, 5 and 2.5.

 

[Colt]

That makes more sense. That's a higher dosage and longer time period than I got from your earlier post. The 40mg is probably what really knocked out your adrenal gland and then it just didn't wake back up before you brought the dosage back up to 20mg.

 

[Leafy2]

I never liked the bruising with the meds.... side effects were nasty.... used to take it for asthma.

 

[bronxbomber]

Hey all...just have a question I was wondering anyone could help with:

I was on Prednisone (40mg) and Advair (100/50 twice a day) for 4 days and 6 days respectively. Also on Clyndimiacin for about a week and a half during this. I dropped them both cold turkey without tapering and have been struggling for a bit. I had headaches similar to Cheekys, nausea, and dizziness for the past 6 days since being off them osince New Years. New Years was especially bad. The nausea and headaches have tapered a bit as well as the dizziness, but I'm still nervous. The fact that I've got a panic disorder/GAD situation going on too isn't helping matters.

Any idea if this makes sense? I'm pretty sensitive to meds but this had me a little worried.

Thanks in advance!