More prednisone questions

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hippimom2
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Date Joined Jul 2005
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   Posted 8/22/2007 8:49 AM (GMT -7)   
I thought I had written down all my questions for my rheumy, but I thought of one yesterday that I would have liked to ask, but it's a little late now, so I'll ask all my knowledgeable friends here.
 
I'm wondering if any of you have found that over time you seem to need more prednisone to feel good or if the amount you need just seems to fluctuate with your disease activity.
 
When I first started on prednisone, 7.5mg seemed to have been my magic dose where I felt pretty good, but couldn't go below it without feeling bad.  It seems that ever since the beginning of summer, I haven't been able to go below 10mg without feeling bad and even at 10mg I have some bad days and a few mini flares.  I don't know if it has more to do with summer being harder on me because it's been so hot and the sun seems stronger or if my disease is just progressing.  My rheumy is having me stay at 10mg for another month to get through the rest of summer and then I'll do a super slow taper.  Even the last few days, I've felt like I've needed a little more than 10mg to get over the little hump I'm dealing with.
 
My rheumy did tell me that summer seems to be a lot harder on us lupies.  I'm hoping that he's right and that once the cooler weather hits, I'll be able to taper and be able to be on less prednisone.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2007 9:23 AM (GMT -7)   
Hi Hippi,

That's a good question, but one that I can't answer. In my case over one year I tapered down from 2 months of 60mg a day to 5mg which wasn't enough so I've now stabilized at 7.5mg.

For a year prior to my fun experience taking 60mg I had been on 5mg a day and was increased to 60 when I had a bad flare. So although I can't answer your question definitively, in my case I don't believe I need more as time goes by. But I do agree with your rheumy that summer has been hard on me. Even though my simptoms are subsiding, the heat, as you know, is getting the best of me.

I'll be anxious to see what others have to say about this.

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/22/2007 10:31 AM (GMT -7)   
I don't think my need for prednisone increased on it's own. It only seemed to need an increase after/during some stress/disease activity.

I think I started at 10, and with fatigue or bone/muscle pain, I had to go up to 13 a couple of times and to 15 a couple of times -- those increases were fairly short-term, like 3 mths or less. General rule of thumb was increase a bit till I felt ok, them wait 3-4 weeks then go down again.

It seems to me that it isn't a drug that you become addicted to or defendant on, but more a supplement to something your body would normally be doing, and in many cases we can get our bodies to head back towards normal....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


katykat
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 8/22/2007 11:02 AM (GMT -7)   
Hi Hippi,

My rheumy has also acknowledged that the summer can be harder. Where I live in Arizona, July, August, and part of September is humid because of the monsoon rains we get. The sun is very strong here and it does get very hot. (today will be 111 degrees) I have a hard time tapering prednisone in the summer and usually when it starts to get drier and a little cooler, I feel better. I hope this helps!

Take care,

Denise
dx - sle 2001, fibro 2006, depression


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/22/2007 12:18 PM (GMT -7)   
Hi Hippi,

I think its Summer that has my symptoms active again too. I've seen many here ramp up on pred and then go down again. Ginny was a great one to explain this and it sounds like the responses above are all in agreement.

I hope you'll soon be back down to a lower dose. There are days when I wish I could just try a prednisone taper to see how I would feel. I don't wish to be on it indefinitely because I am aware of the side affects . . . but its hard knowing there is help out there that I can't access.

I am really thankful though that the fatigue hasn't returned in full force.

Its really nice to hang out here while I'm feeling crumby.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/22/2007 3:53 PM (GMT -7)   
Thanks for the replies. I'm guessing like the rest of you said that the need for increased prednisone probably has more to do with disease activitiy/severity than my body just needing more over time. My rheumy did explain something about the sun and how hard it is on people with lupus especially through the summer months and went into some scientific explanation that I didn't follow too well.

I also have to take into account that I went pretty strong all summer and that I just recently got back from vacation and we have extremely hot, humid weather right now. I told my husband that I have been pushing myself a lot this summer and my body is finally telling me that I have to take a break. So, I'm trying not to get too discouraged about feeling this way.

The kids start school tomorrow, so I should start getting some daily rest again.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2007 4:07 PM (GMT -7)   
Hippi,

What everyone has said here makes so much sense to me. I walked into a local craft store yesterday and they had their fall displays out and when I saw the pumpkins my heart surged. I didn't realize just how much I'm looking forward to fall this year. In fact more than ever before. I hope that with your children back in school you'll be able to get much more rest and do the things that you enjoy doing while they're in school. That combined with cooler weather ahead will hopefully help you start to feel better.

Rosie, I wondered if the fact that you're back and more active in the forum again meant that you're not feeling as well as before and I'm sorry to hear that's the case. As with Hippi, I hope the hot weather is what's getting you down and that we all have a break in our pain and fatigue once fall arrives. I think I could have bought a second home somewhere in the mountains with all the money I have spent on air conditioning this summer.

Hippi I hope all goes well tomorrow with your kids.

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


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 8/22/2007 8:35 PM (GMT -7)   
Hi Hippi, I don't think for me it's a matter of getting immuned to it but I have noticed that if I feel pretty good and energetic for two or three days in a row I would have to take more pred. to continue to get the same energy. I think it is more because I am wearing myself out though. I usually try to stick with my 5 mg but to be honest if I have a big day I will take 10 mg. I try not to do that for more than a day or two because I don't want it to stop my endocrine glad from working. So instead of going for day 3 I just don't take it and end up in bed watching t.v. all day and sleeping. I hope with the cooler weather coming it will help you.

Denise I'm going to be in your neighborhood around the 10th of next month. My folks live in tempe and my bro lives in apache junction so I be going right passed ya.

love ya guys
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


katykat
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 8/23/2007 8:05 AM (GMT -7)   
Carol,

Wow, you are practically going by my house. I live in Mesa!!!! I'll pray that it is nice and dry when you arrive!

Take Care,

Denise
dx - sle 2001, fibro 2006, depression


Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 8/23/2007 2:59 PM (GMT -7)   

Hi hippimom,

Summer time has proven to be the hardest season to get through. On the hot and humid days I am miserable! My pain increases and I am more days of fever. Oh and as the temperature raises so dose my fatigue. By afternoon I'm exhausted. I think the summer season causes Lupus to be more active and therefore we need more prednisone. I don't think we become immune to prednisone. At least I hope not.

Maybe its the kids home for all summer. LOL. Yea they are all back at school. yeah

kitty


Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/23/2007 7:07 PM (GMT -7)   
Hi, Hippi. From what I've read, I don't believe prednisone is a drug that you gain a tolerance too. I think it may just have to be adjusted in reference to your bodies situation/needs. Sickness, surgery, too much stress, etc. may cause a need for more at different times. A lupus flare would certainly call for more, but I don't think you have to worry about addiction per say. Unfortunately, I think we have all dealt with some of the problems withdrawal from the drug can present though. I think it's more of a cycle of all of your bodies normal glands, hormones, etc. getting used to doing their jobs again. There is a woman in my local support group who has been on prednisone for like 13 years and her maintenance dose is still just 5mg. She does have problems at times when she has to take a little more though. Hope this helps some. Take care. Hope you're resting more and starting to feel better.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/24/2007 4:50 AM (GMT -7)   
Thanks Patty . . . I'm just trying to prevent a huge downward spiral. Yes . . . I do like the cooler weather better. I think the heat beats heck out of a healthy person and its just too much when you're already teetering on the normal/sick see-saw. Thanks for your encouragement.

Hippi . . . . how did things go with the first day of school???
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/24/2007 6:52 AM (GMT -7)   
Thanks for all the responses. Kitty, what you described is exactly what I have been going through. I've been a little upset because I've had so many fevers again lately. For a really long time the amount of prednisone I was on seemed to control my fevers pretty well, but I seem to be getting them daily again. But we are also having extremely wet, humid weather with lots of rain, storms, and flooding.

The kids had a great first day of school. I was a little worried about my daughter with Kindergarten because she gets pretty nervous about anything new, but she did great and came home bubbling with news about everything she did. My son has always loved school and was very excited to start again.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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