Prednisone Withdrawal Bad! Help!

JaynesInPain
  • By JaynesInPain · September 10, 2009 at 11:41 am · 43 replies
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My docs & I have agreed that I need to get off prednisone as it is hurting more than helping. At 1st I was on 60mg wk, then 40mg for 3-1/2 mos, then 20mg mo, then 17-1/2 mo, 15wk, now 10mg. I am really suffering. I have extreme fatigue/weakness, feverish, muscle/joint pain, can't sleep, sweats then chills, worst is the mental part: anxiety & depressing feeling. This is day 4 of 10mg. Each day is tiny bit better, but yikes. My pulm. doc wants me to go down to 5mg next wk, then none. My PCP says that's way too aggressive. I agree. So I am trying to come up w/better plan. Any tips from any of you who have done this is greatly appreciated!

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43 replies   

BUNKIE

It is my experience that coming down is an awful thing to do. You might have to go a bit slower. Talk to your doctor. Also I noticed it takes my body about 2 weeks to adjust to each lower dose. Then I have 2 stable weeks and go down another. Worst is that I am going down only 1mg at a time and still feel it. I had an easier time coming down on the higher dose than now. Good luck and hang in there.
Really watch your salt and sugar right now and drink water.
Bunkie

Paradox

In general, Steroid rebound hurts. The symptoms you describe are very typical and in essence, it is a bit like starting high dose steroid. People can always expect the joint aches and pains and often can anticipate the anxiety and mood swings. The rest is a grab bag of symptoms similar to starting high dose steroid but with a different "flavor" to it for most people - something you seem to be referring to as that depressing feeling.
There is no "one-size-fits-all" way to wean. Most people do ok until they get under 20mg, and somewhere under 10mg most people begin to plateau. The key to remember is that these symptoms are temporary. The major effects may last as much as 8 weeks after being off steroid, but it does fade and becomes easier every day. Weaning slower, as Bunkie suggests, is often a softer approach. I suggest similar techniques as when starting high dose meds - benadryl at bedtime to help with sleep, gentle stretching exercises and ice-packs for the joint pain with some ibuprofen or similar, stomach protection such as prilosec or other PPI - H2 blocker like zantac if needed.
I personally found that plenty of coffee and tea helped me (but then again I find that true for most things). Sometimes all you can do is remember why you're weaning and that the symptoms you are experiencing are more likely to be rebound than flare.
For what it is worth, I've discussed this issue with many patients and my favorite pulmonologists and the same symptoms occur in people weaning from steroids who don't have sarc.

Good luck and be well

PurpleSnowflake

Hi Jayne,

I had a lot of these same symptoms you are describing while I was weaning. I ended up having adrenal crisis which is a real life threatning event. I don't want to scare you but I would definetly tell my doctor. I was hospitalized for 8 days and the unfortunate part was a specialist had to come see me because most regular doctors do not know much about it or havent experienced it. I was on a very slow taper 1 mg a month and had made it down to 3 mg, I was almost off and excited, I did not know that my adrenal glands were still not responding a simple test called an ACTH can tell your doctor if the adrenal glands are working. This is the test my pulmonologist will do when I get back down to 10. See once you drop under 20 mg and your body gets stressed from surgery,infections etc. then you temporarily have to go back up for a few days then wean. My doctor has me go to the previous dose I last tapered from. I had a UTI a very minor one and didn't even know it. This is why I went into a adrenal crisis, my body could not deal with the stress.

I hope this helps :)

God bless and take care!!!

PurpleSnowflake

I am tapering 2.5 mg every two weeks until I get to 10 then 1mg at a time until off. Even if you have to go slower it's better than feeling sick or having adrenal crisis.

jkr2

I just hated being on it so much and i am a little stuborn, it was easy for me, i had my mind made up already and i knew that pred. is very toxic for anybody, so i guess mind over matter. i hope that this helps you. good luck!

JaynesInPain

Snowflake,

Thanks for sharing your situation. How did you know that it was worse than it should be? How did you end up in hospital? Strange how our bodies adjust to things. I am thinking of alternating by 2mg everyother day. I read that suggestion from MD on site for Pred. W/Drawal. I hope this passes and I hope you can successfully get off too!

JaynesInPain

Bunkie,

It's funny you mentioned that you had easier time w/higher doses. I was thinking the same thing...not too bad from 40 to 30 to 20. 15 was bad so they upped to 17.5, then to 15, then to 10. Sounds like it's when we get below 15ish that our body rebels. I really hope I don't have to go 1mg/mo. I am sorry that's what you need to do. I guess we just have to keep our "eyes on the prize". Thanks for the tips.

JaynesInPain

Thanks for the info & encouragement. I really appreciate all the informative posts you've done...meds & communicating w/docs. Very helpful! I will combine all the suggestions, including yours to remind myself it's only temporary (as long as sarc doesn't take over). Perspective is always a helpful thing. THanks Doc.

DoreenC

It sounds like you need to wean slower. Let your primary help.
I once was weaned too fast and I can not even describe the excruciating joint pains that I had. It landed me in the ER needing morphine and a shot of steroids.

Best Wishes,
Doreen

PurpleSnowflake

Hi Jayne,

I just continued to get weaker and weaker to the point I could not even stand up for a few minutes. I was also very nauseated and did not feel like eating. My bleeod pressure was also very low.

Linds25

I am have only taken pred twice in three years for high does for 5 days to calm down the sarc flare up I was having each time as they were pretty bad...i couldn't even move my fingers without feeling like i wanted to die....so I can't give you advice or experience on what you are going through. But your withdrawal symptoms sound like my every day symptoms. One way to look at it and this is bad but it may help you mentally is that this may just be the way it will be minus a few symptoms when you finally wean yourself off the drug. Prepare yourself mentally and find ways to work with the pain and frustrations you are going through right now. It does get easier once you can get your mind around what your body is going through. Positive thinking helps to an extent..and I am not trying to be all bubbly about it or anything but when I feel really bad I get a paint by numbers and work on that. It helps occupy my mind and although the pain and discomfort are still there in the background it is not at the forefront of my mind, which really helps....instead of it being at a 8 it is at a 6. One thing we all have to deal with is the constant pain and discomfort and the sad reality is all they have for us is the steroids or the pain killers. One day hopefully they will come up with treatments to make us more comfortable and functional in life but until then.....keep your head up, look for things to occupy your mind and talk to your doctors......they don't know what is going on in your body unless you tell them.

celebratehope

I am confused now - I had been on only 5mg for over a year and was doing pretty well - I have pulmonary sarc - and my pulmonary dr. decided to try and take 5mg every other day - I went thru all the symptoms mentioned - muscle pain - terrible spasms in my thighs - knots that wouldn't relax - but I was determined to stick it out - then got so uncomfortable - went to my primary care dr. - and he put me back on the 5 mg every day - I feel much better - but wonder if I gave in too quickly - (?)

rabidsarcoid

when you get down to 10mg daily try huang lien 1tablet about 2-3hrs before bed. its a chinese herb formula mainly chrysanthamum based and other herbs it can be ordered online any chinese herb store its very inexpensive i'm attempting steroid withdraw myself its not going well cold turkey its time to breakout the wuang lien. is there anyone else who uses the steroid suppository anusol 25mg per dose my blood sugar doesn't ballon it also seems to reduce side effects however you have to take a little oral steroid with it for maximum relief

pearlsnowflake

You need to wean slower...First time on pred. they weaned me 5mg. per month. Too fast--bad reactions. Am on pred. again and they wean me one mg. per week. Down to 19--mon. down to 18 etc. It seems below 20 however I do experience break through pain but it hasn't hit me like a mac truck like before on a faster wean.

JaynesInPain

celebratehope,

I would describe my symptoms as more than uncomfortable, however each day is a "teeny" bit better, so I am trying desperately to hang in there. Instead of going down fr. 10mg to 5mg this coming Monday, I am going to try to alternate daily fr. 7.5 to 10mg. & see if that's better. Then the next wk fr. 7.5 to 5mg & so on. We'll see how it goes.

In your case, maybe you'd do better alternating daily fr. 5mg to 4mg, then next wk fr. 4mg to 3mg & so on. Maybe discuss that as option w/doc if you really want to get off pred. although it sounds like it's really helping you (which wasn't my case).

IreneMarie

Great posts! I am to start tapering when getting back from Vac. in Oct. My Rheumie is very supportive of my plan to take it real slow. So it will be a plus just to feel like I am in control of something, adjusting my taper between visits and routine labs.

Keeping my eye on the prize!

mndharmon

I had th same symptoms that you describe. Be careful, I thought mine was withdrawls and it turned out that my sarc had gone crazy. Worse than my very first CT and that was bad. Just make sure you keep in touch with your doctor and maybe ask for a CT while you wean. Good luck and keep us posted.

jon-with-no-h

slow
and
steady
wins
the
race

I was "only" on 40 mg pred/day, starting last October, and after one failed attempt in April, finally got of the stuff at the end of July. The last 6 weeks I was on 2.5mg every other day, then every third day then every five days then off.

Some long-long-long timers need to be decreased a milligram at a time.

Yeah, I now have type 2 diabetes...yeah, I have to loose the extra 35 pounds pred gave me...would I do it again? In a heartbeat. Pred saved my life once and made living (and breathing) much easier. I expect she will do so again...

NWtransplant

My breaking point for pred has been 20 mg,, even when I went down 1 mg at a time from 30 to 20. At 20 I couldn't even get out of bed. But now I'm learning from all of you that such symptoms can occur even when going down only 1 mg at a time. I just thought 20 was not enough to deal with my sarc symptoms and that was the reason for the meltdown.

This time I'm going down 1 mg at a time from 25 to 20 and then staying on 20 for a month, then 1 mg at a time to 15. The entire weaning from 25 to 15 will take about 4 months, but it will be worth it if it works.

Anna

kimkahuna

Been on 5mg since January. Started tapering 2+ weeks ago and did okay on 4mg. Now on 3 mgs. today I am exhausted and joints all over hurt, muscles ache. Too quick a taper. I was pretty much symptom free, except for the kidney stones and IBS, until today. 4th day on 3 mgs. I hurt all over.

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