having a bad day

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katykat
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 8/9/2007 8:54 AM (GMT -7)   
This morning when I woke up I could barely walk, it hurts to even walk around the house.  My rheumy has me decreasing me prednisone by one pill each month.  about 10 days ago I went from 8mg to 7mg.  Could this be bringing on this flare.  Also am having a hard time getting rid of a urinary infection.  I see the rheumy on Monday.  Any ideas?  I am going back to bed now.   Hope you all are having a good day.
 
Denise
dx - sle 2001, fibro 2006, depression


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 8/9/2007 8:59 AM (GMT -7)   
Denise,

I'm not an expert on prednisone but I think I read somewhere once that once you hit 7.5 mg, the taper should be extremely slow something to do with your natural cortisol levels and that amount. Based on this, I'm not understanding why your doc went from 8mg to 7mg. That is a big jump and skipping the 7.5mg mark. I would definitely bring this up to him. Maybe you should call him today about how you are feeling and see if he can let you go back up to 8mg while you are talking about the taper. I hope it all goes well.

Take Care


"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
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Post Edited (dbab) : 8/9/2007 10:24:47 AM (GMT-6)


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/9/2007 10:03 AM (GMT -7)   
Hi, Denise. You definitely do have to use care when trying to taper the prednisone. I am currently trying to do that myself. I am just down to 9mg though, and can't really say that I'm holding it yet. I will have been at 9mg everyday for 3 full weeks tomorrow. You have to watch before you just give up and jump right back up to the higher dose because the prednisone has the ability to mimic a flare just in its' withdrawal symptoms. Hopefully, you have a helpful rheumy who will take the time to work with you as you taper. They can do blood work to see if there is actually increased inflammation occurring so they will know better how to direct you. The trick is finding someone who will take the time to work with you like that and be willing to listen to you. I would definitely be in contact with your rheumy to keep them aware of what's happening and if it gets too much for you to take, then look at trying to find the actual cause so that you can be successful in your taper. If there is actual increased inflammation, you may well have to go back up for a while until things settle down. I'm pretty new at this game myself. I just know that I find it VERY aggravating. Best of luck, let us know how you do.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/9/2007 12:09 PM (GMT -7)   
Denise, I'm so sorry you're having a bad day, and I really do understand because I think I'm going through the same thing you are. What Des and Sharen describe makes so much sense to me. I'm also tapering but some days I give up and take a little more prednisone and should talk to my doctor in depth about this tapering business.

I hope you can talk to your rheumy before you go in on Monday. There's no reason to feel bad if you don't have to.

Sharen, you're right, it's very aggravating.

Des, my rheumy has me taper at 2.5mg intervals, first from 10 to 7.5, then to 5 then alternating between 5 and 2.5 every other day. I finally gave up and starting to increase it on my own and am taking 7.5mg every day. Even at that level, the woman who gave me a massage this morning told me that I have more inflammation than normal. It sounds like Denise and I need to get to the bottom of this.

Denise, I hope your day gets better. This pain is for the birds. Please let me know what you learn from your rheumy appointment on Monday. In the meantime I'll be thinking of you.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 8/9/2007 12:17 PM (GMT -7)   
I think what I read is that normally our bodies produce 7.5 mg of cortisol naturally. When we use higher doses of corticosteroids long term our bodies stop producing its own cortisol so thats why there is damage to the adrenal glands when you taper too fast. You need to give your body a way to adjust and to reproduce the cortisol again without it being steroid dependant. Again, this is what I interpreted what I read so I could be so way off base here.... woudn't be the first time. :-)
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/9/2007 12:25 PM (GMT -7)   
I agree with Des --

Normal adrenal glands produce 7-7.5 mg cortisol. We have to taper slowly to give the adrenals a chance to take back over -- they get to take some time off when we're on steroids.

So from everything I've seen from about 8mg down, the taper shouldn't be more than about .5mg every week or so.

Possibly faster if you've only been on low dose steroids a short time -- short meaning < 2 or 3 weeks.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/9/2007 1:36 PM (GMT -7)   
Thanks Des and Lynnwood,

I need to have a talk about this with my rheumy. This explains why I've been having so many rough days intersperced with some great days. It's a little frustrating that a physician didn't tell me what you have both explained in a couple of sentences.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


katykat
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 8/9/2007 1:53 PM (GMT -7)   
Thanks everybody for responding. I took one more pill of prednisone to bring me back to 8mg. It doesn't feel like it kicked it very much yet, but hopefully by tomorrow. I had blood taken yesterday so my rheumy should have results by monday. I just realized, the last time I tried to taper down this happened between the 8 and 7 mg. This happened last summer and my doc told me just to go back up to 8 mg again and I never did go off it. Thanks for all your info, I will be better informed for monday and will let you know what she says. Sorry to be so down earlier, since my day has been so foggy, I think I will just float through the rest of my day!

take care,
Denise
dx - sle 2001, fibro 2006, depression


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/9/2007 3:02 PM (GMT -7)   
Denise I hope the extra mg of pred makes you feel better by tomorrow.

Des and Lynnwood, I found the following on the web. I don't know anything about the source, but the information sounds right, especially according to what you told me:

"Dr. Zashin's Tapering Schedule To Reduce Prednisone Withdrawal

In terms of a taper regimen, the longer one has been taking steroids, the slower the taper. I will typically taper patients:

by 5 mg increments when they are taking less than 40 mg of prednisone
by only 2.5 mg when they reach 20 mg of prednisone
by 1 mg increments once they reach 10 mg
I may elect to decrease the dose on a daily basis for patients who have not been taking steroids long, to monthly in those who have been on them a while.

It is not uncommon, when patients first decrease the dose to feel some achiness or fatigue. These symptoms often resolve over 2- 7 days. If they do not, one may elect to temporarily increase the dose and taper more slowly. Some patients may have difficulty tapering off steroids despite incremental tapers of only 1 mg.


Occasionally tapering on an every other day basis may be useful. For example, instead of tapering from 4 mg to 3 mg of prednisone, one might try taking 4 mg one day and 3 mg the next day for one week.(i.e. an alternate day taper) Then if successful, try 4 mg one day and 2 mg the next and so on until you are on only 4 mg every other day. (e.g. 4 mg one day and 0 the next day) Then, try to go down on that alternate day."

I can't believe I didn't know this. Thanks. :-)
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/9/2007 5:41 PM (GMT -7)   
Hi, Denise. I agree with PattyLatty about the SLOW taper of 1 mg especially once you reach the 10mg point. I have done quite a bit of reading about tapering as I've had so much trouble with it. I've even read where when you get to 5mg, it should only be reduced by half a mg (and some people have to go smaller than that). That every other day reduction can be used to gently introduce your body to the new lower dose if you've had problems reducing it before. Unfortunately, I have tried adding back that missing 1mg later in the day that you spoke of. I just didn't seem to feel the effects until I took the (old) higher dosage together in the same way my body was accustomed to it. Anyway, don't lose hope if you don't feel relief right away, give your body back that same regular cycle it's used to and see if that gets it. I hate prednisone! Good luck.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94

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