Posted 5/22/2007 8:48 PM (GMT -7)
A faster taper should be fine for you, hippimom, since you've only been on the 15mg dose for a short time. However, until you REALLY feel better on a continual basis, it's my opinion that you should stay on 15mg for a bit. I'm only being allowed to from because the increase in Cellcept is supposed to have lessened my dependence on the prednisone. Day 4, and yup, my sleep is messed up! Sleeping a bit less and tired-er during the day. Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions
Posted 5/23/2007 10:04 AM (GMT -7)

Hello everyone,

As I increase and decrease my steroids myself as and when I feel I need to, when I taper I do it by 1mg per time.  Drop 1mg and perhaps 3 days later, drop another 1mg.  I have been on them for over 30 years so I am allowed to manage them myself.  I know it isn't the same for everyone, but this works for me and is the way I do now by learning from trial and error as it were.  

They are a medication that has to be dropped down slowly is you have been on them for over a month.  Usually if you are on a higher amount for less than a month and have to reduce down then doing it by 1mg in this way is ok. 

The basis for the taper is because - as you know - the adrenal replacement levels have to be reached so as not to cause any problems. 
 
The rule of thumb for taper is normally 10% per week if a patient has been on steroids for more than a month.  When the adrenal replacement levels have been reached - the equivalent of 7.5mg daily - then the taper can usually be done more slowly.  Taking oral steroids suppresses the internal secretions of steroids from the adrenal gland.  So when the oral medications are tapered this gives the adrenal gland more time to make its own "natural" steroids.
 
Another thing that sounds quite strange - to me anyway - is that when we get pain upon tapering, it is thought to simulate fibro.  A "steroid withdrawal syndrome" occurs and this simulated fibro type pain  can mimic lupus pain.  Very weird, but apparently this is what can happen.  If the levels of steroids are then kept at the same dose for 2-3 weeks, then the pain will go.
 
I do find this weird because I also have secondary fibro but can differentiate between that pain and my horrid lupus pain.  They feel so dfferent to me personally.  How about you all ?
 
I am passing this information on from a personal perspective not in any way medically.
 
Take care.
 
goldenwings  sad

Post Edited (goldenwings) : 5/23/2007 5:43:48 PM (GMT-6)

Posted 5/23/2007 11:16 AM (GMT -7)
Hippi,

Glad you got some relief but sorry it had to be with more prednisone. The old "balancing act". I believe, as goldenwings says, on doing a taper on your own. I only have 5 mg tablets so can only break them in half but when I went from 10 to 7.5 it was very gradual. Any day I felt I needed the 10 (stiff fingers is my barometer) I'd take 10 and then go back to seeing how long I could go with 7.5. I'm down to 5 mg per day now and wish I could lower it. I know you'll do fine just listening to your own body.

Hug the dog, enjoy your family.

Take care,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Posted 5/23/2007 6:16 PM (GMT -7)
Thanks everyone for the support and the tips about tapering. Babs, you know me too well when you told me not to overdo it - I probably have overdone it the past few days because I've been so relieved to have some energy, but now I plan to slow down some. I'm pretty tired tonight. Lynnwood, I agree about staying on the 15mg for a little while to make sure I really get out of the flare I was in. I'm thinking about calling my rheumy again and asking about it. I'd love to stay at 15 for at least another 2 weeks or so and get things more under control. When I do taper, I think I'm going to do what Sue says she does. Goldenwings, that's interesting about the pain when you taper. In the past I did okay when I would taper from 10 to 7.5 but I haven't successfully been able to go to 5mg though. By the second or third day at 5mg I always feel rotten, have lots of pain and feel like I have the flu. I've never stuck it out to see if it gets better because I feel so horrible. I had no idea the pain was like the pain of fibro. I know I've said it before, I just wish this stuff wasn't so bad for you. It helps me so much, except for the wired feeling keeping me up at night. I guess I'm just really glad to have some relief but really scared about tapering and maybe going downhill again. If I have trouble tapering, I will definitely call my rheumy. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 5/23/2007 10:41 PM (GMT -7)
Hippi, sometimes we have do do what our body tells us to do and it sounds like you're getting a strong message to stay at 15mg for a while. You might even consider tapering by 1mg every month, or at least till you feel normal on the new level.

As far as sleeping goes, I finally resorted to Lunesta after my lack of sleep was causing me to get sick. I didn't want to add one more pill to my home pharmacy, but I had to get some sleep. And for you, Hippi, with kids and a busy household, and Josh feeling bad, sleep is really important.

Good luck with your taper & let me know how you do. I've been thinking of you this week.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 5/24/2007 9:18 AM (GMT -7)
Thanks Pat. Today is a little rougher day - I'm hurting and tired and have a moderate headache. I probably did this to myself and am getting a firm reality check from my body. It's also raining and humid and I'm premenstrual which always causes some problems for me. I'm off to nap soon. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 5/24/2007 10:40 AM (GMT -7)
Hey Hippi,

Sorry you've been having such problems again (still?). Good that the pred is helping. I hope you do well with the taper. Enjoy your nap!!


Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
 
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Posted 5/24/2007 2:07 PM (GMT -7)

Hiya everyone,

I still can't get my head around the statement that the pain caused when tapering steroids "simulate" fibromyalgia pain. nono I still maintain that only we know how the pain feels 'cos we get it.  Must look further into this. 

I have a consultation with my lupus doctor in the morning, then I have physio so it might be beginning of next week before I can do any more research.  

I have the company of my husband at weekends as he works away most of the week, so we have together time.  So I try my best to keep off my pc hee hee !!

Take care.

goldenwings  sad

Posted 5/24/2007 3:25 PM (GMT -7)
Hey Rosie - it's so good to see you here. I was actually thinking about you earlier today and wondering how you were doing. I had been doing pretty well for a long time and then late Feb/early March things got crazy in my life. I helped care for my grandmother in her home while she was dying and although I'm glad I did it, it was long and exhausting and sent me into a long flare. Then my husband had quite a few work trips and my kids had a lot going on too. My son's illness got a lot worse too so we have been making numerous doctor visits for him, so I really haven't caught a break. I'm glad to be at 15 mg and hope I didn't mess things up by doing a little more while I was feeling better. It ends up that I have a fever today too - I took my temp after my nap and it was 100. My hubby wil be home soon and I'm going straight up to bed when he gets here - I want to get this thing under control as soon as I can. Rosie, how are you doing? Is the mtx still working well for you? Goldenwings, enjoy the time with you hubby :) Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums

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