Subject: Tapering off prednisone
Date: Sat, 19 Apr 1997 14:45:10 -0700
From: junior1@webtv.net (Jeannene Hansen)
To: xxx@xxxx.com

Shirlee and sister,

Just wanted to share my experiences with tapering off prednisone. I have an as-yet undiagnosed complex anemia that has the doctors perplexed so they decided to load up their bazookas with corticosteroids and aim them my way to see if I would flinch. I call it "that evil drug" in part because I feel it is not the correct med for my situation.

I was told I might experience euphoria and a bit of weight gain as side effects. My prednisone pals have concluded that doctors won't tell you the side FX, because if you knew you would not allow them to give it to you. I'm sure you have done your homework and read up on this much prescribed drug.

I took Prednisone for 3 months (60, 40, 30 mg in month long doses) The first month was great, all the feelings of euphoria, omnipotence and basic "prednisone bounce". This length of time is safe, because your body is still self-producing the corticosteroids naturally. People with poison ivy and skin ailments will see their symptoms clear up immediately in a month's time and can quit the dosage over night. After a month (and I see your sister has been on it for years) the body quits self-producing and allows the more powerful and perhaps efficient prednisone to take over, shutting its own natural hormone factory down completely.

After 3 months, when I started feeling more than a little psychotic, my surroundings became surreal, I didn't recognize myself in the mirror, (beyond the moonface bloating) and I found myself screaming at a clerk in Walgreen's about the price of Tampons, I knew it was not the drug for me. Everyone reacts differently, so your mileage may vary. :-)

It took me 5 months to taper off it completely with the help of an understanding doctor (.5mg tapering every 2 weeks) You probably know you cannot quit cold turkey and need to take a gradually declining dose to allow your body to "remember" what functions the drug has commandeered since your beginning dosage. The doctors warned me "you could end up in the hospital" if I just quit taking it. I assume that meant some major league failure of my system as a whole and did not go there. The tapering process really tested my endurance. Every 2 weeks I went through the exact same withdrawal process as the week before. Pains; mental and physical, extreme fatigue and in general, not a happy time. I assume it is like any other addiction, that the body must kick the habit/re-program to do without. Most of this occurred in the morning on rising, (the time when the body gears up for the day and makes its demands on its own systems) and I found if I could "will" myself out of bed and get moving (no small feat) I could make it through the day. The symptoms slowly diminished over the 2 week period, as the body stablized/learned to do with a little less of "that evil drug", until the next .5 mg drop, when it started all over again.

Gather your friends and family around you for support, it is not an easy time. I have spoken with others "kicking" prednisone and the 20 mg mark seems to be the part where your world seems to come crashing down around you. If you can keep reminding yourself that all the morbid thoughts you are having are the drug talking, you can get through it. I was reduced to weeping and depression and did not see an end in sight. Luckily, a friend recognized it as the 20mg mark and held my hand through it all.("it's the drug, it's the drug, it's the drug") Some have none of these effects and swim unscathed through the taper.

As if to add insult to injury, because the drug has been suppressing your symptoms (read that last part over carefully), your symptoms can return with a vengence after their long sleep. Almost like a pendulum swing, they may come back stronger than before. I think the body can re-adjust over time and these will reach an equilibrium again but do not be surprised by the fierceness of their return. OR (more bad news) new symptoms that were unnoticeable before, flaring up after being suppressed, to a new level of your awareness.

Still seeking a diagnosis, I went to another doctor at Stanford, thinking him the higher authority. After many tests (2 bone marrow biopsies and looking for a donor among my frightened family) I was convinced to take a short term dose of Dexamethasone (10 pills for 4 days once a month) A rose by any other name is still a corticosteroid. I experienced the familiar depression and easing into psychosis after 9 months, even though the doctor was encouraged by some fluctuation in my blood numbers. When he revealed to me he planned to keep me on this regimen for years (not something he told me up front) I bailed. My tolerance for this drug is nil and instinctively feel it is not addressing my malady. Luckily this short term megadose did not require tapering and I am better for it only one month later. Hurrah!

Something else he did not tell me up front, is the loss of bone density caused by prolonged use of steroids. I stumbled across a N.Y.Times article that suggests preventative measures like taking Calcium and Vitamin D, and weight bearing exercises to limit bone loss. I can FAX this to you if you like or a search on "steroids" or "osteoporsis" in their Personal Health archive would probably bring it up. The author was Jane E. Brody.

In re-reading this, I realize I am not giving you very good news and information you may have already encountered. The best medicine I had was knowledge of the drug and its idiosynchrosies, stories of similarities to my plight and in some cases stories of those that had even more horrific experiences than I (Grandmother that tried to commit suicide at the 20mg mark by jumping into a neighbor's pool on Thanksgiving day and subsequently admitted to an instituion for psych evaluation)

Best of luck to your sister and don't hesitate to email me if you need any more of my limited expertise ;-)

Gravity never sleeps, Jeannene#

> From: Jeannene Hansen <junior1@webtv.net>
> To: xxx@xxxx.com
> Subject: Tapering off prednisone
> Date: Saturday, April 19, 1997 2:45 PM

Jeannene,

Thanks so much for the infor on tapering prednisone. I only wish I would have had even a tiny bit of the info needed when my doctors put me on the stuff almost 8 years ago! I had been sick for an entire year going from doctor to doctor and was so thankful to feel so wonderful all of a sudden. I had no idea what would go on later. I didn't even know enough to ask if I would have to take this drug forever to feel so well. I would've said no or at least tapered off after 3 months. Now I'm in a mess because the pain and symptoms are so terrible while tapering. Now, thanks to you, I'm a little more gutsy about trying again and knowing that maybe things will get better, may make all the difference. I didn't realize the aches and fatigue I was feeling could be from decreasing the dosage. My poor body! I thought it was my disease coming back and probably it is some of that. I'm certainly not looking forward to it returning, but I know it will and I think I am prepared. I too suffer the pain and fatigue in the mornings. I find that dragging myself out of bed and getting under the warm shower helps so much. I don't believe in sitting around and feeling sorry for myself, although it is tough sometimes. I try to keep a good and positive attitude.

I haven't been lucky enough to find a doctor who understands my need to try alternatives to prednisone. They all seem to want to put me on other organ rejection drugs while tapering. Then I have to taper off of that stuff too. No thanks! I think one body killing drug is enough. I found your 20 mg. mark interesting. I get psychotic and scared to death of the future. I imagine all kinds of terrible things going on inside of me. I try to imagine tiny miners inside of my colon getting rid of the toxins and helping to clean me out.

I'll be going home in a couple of days. (I've had a great vacation, but time to return to the real world!) When I do get home, I plan to try enzymes, aloe vera, antioxidants, acidophilus ,bifidus, Pycnogenol and Brazil nuts for added selenium. I need to change my diet also and plan on trying to eat more oats and watch the wheat. I totally cut out dairy products 8 years ago. I will begin my tapering at about 1 mg. per 2 weeks or maybe even a month. I've tried the 5 mg. tapering but it seemed too drastic for me. Maybe watching my diet more closely and taking the supplements will help the tapering process. I can only hope so and proceed and endure.

Thanks you for your response. Continued good health to you! Even thouh I'm going home, please keep writing if you read more or have any more sound advice. It helps so much to know that you are not alone out there, floundering and getting no where fact!

Shirlee and Sister, Kandie

Subject: Re: Tapering off prednisone
Date: Sun, 27 Apr 1997 12:50:47 -0700
From: junior1@webtv.net (Jeannene Hansen)
To: xxx@xxxx.com

Hey Kandie!
So happy to hear my note helped in some small way. I tapered .5 mg every two weeks and wanted desparately to do it faster, but my doctor explained my body had to learn to 'make do' without it. The tapering process can feel excruciately slow but hang in there. I have a friend with Crohn's (also put on Prednisone) and my understanding is that it goes into a kind of remission from time to time. I think the plans you have for your diet change and supplements can only benefit this process; giving your body fewer hurdles and hoops, and letting it be its own best friend. After living 3 years without any clear diagnosis and all the fear that can foster, I may have found (on my own) that it is my thyroid going unregulated after nuking and subsequent surgery. I consider my scepticism of a doctor's authority/expertise one of my healthier attitudes. I will trade prayers/good vibes/crossed fingers/the voodoo you choose to do with you for your safe travel through tapering and my 'proper' self diagnosis.
As they say on the list, Namaste!, Jeannene