increasing perdnisone?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/1/2008 10:26 AM (GMT -7)   
I've really been fighting against increasing my prednisone.  It had taken me a very long time to successfully get down from 10mg to 7.5mg.  My goal and my rheumy's goal is to get me to a 5mg maintenance dose.
 
Ever since the ice storms right before Christmas and living without power for 4 days and all the traveling for the holidays (we just got back from family that lives 5 hours from us), I've pretty much crashed.  It makes me really sad and pretty discouraged because before all of that I was finally at a pretty good place and felt good enough to do a lot of the things I wanted to do within reason.  I was really looking forward to starting my next taper toward 5mg.
 
I've been pretty miserable the last two weeks and have had to take my pain meds to be able to function.  I don't want to increase my prednisone, but I feel like I'm going to have to.  I just hate doing it because I don't want it to take forever to get back down to 7.5mg.  I don't know if some days of hard core resting would help, but it's really hard to just go rest all day when you have 2 fairly young kids.  They are great kids and pretty independent, but I don't feel right about just heading off to bed.  As you can tell, I'm not thinking very clearly either and it's harder for me to make decisions when I'm like this.   I probably will increase my prednisone and see if it helps and then hopefully after a week or so I can taper back down.
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



townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 1/1/2008 11:29 AM (GMT -7)   
I know how travel takes it out of you - you might just really need the rest. So my advice? CRASH! Try not to increase the Prednisone, unless you absolutely have NO alternative. CRASH LIKE A FULL-O-GARBAGE DUMPSTER FALLING FROM THE TOP OF A 4 STORY BUILDING. If you're not better then, then try the increase.

Diagnosed with Sjogrens in 1993, Raynauds and Vasculitis in 2001, and Lupus in 2004. Current Medications: Prednisone up to 30 mg now, Plaquenil 400mg, plus now a couple of meds for high blood pressure (from the Lupus Nephritis) and one for the heartburn they give me.


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/1/2008 11:35 AM (GMT -7)   
yea i know how you feel we just back from a week in chicago (both our families live there) and we live in alabama and we drove back and forth so you can imagine how long that car ride was, plus everyone wanted to see us and wanted us to come see them while we were in town. so i am beat but i agree you should definately try some hard core resting but instead of resting in bed try resting on the couch so that you can still keep an eye on your babies, if you have to gate off doorways so that they get leave the room your in and have toys out for them to play with and keep snacks for them and you close by so you dont have to get up when they want a snack and if the are still in diapers keep those close by with a trash can and some plastic bags so when they take a #2 you can just put it in individual bags so you dont have to get up and throw them away. thats what i do when i would watch my nephews and it was great cuz i only had to get up when i absolutely had to. good luck!
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/1/2008 12:24 PM (GMT -7)   
(((((((Hippie)))))))

I'm so sorry you are still spiraling. I know this is too little, too late . . . but when we are tapering (or taking high doses of pred) we really need to continue the rest vs. activity pacing that we do. Christmas or not, the tough decisions really come before the flare. I'm so sorry you are having a hard time tapering. It would seem that BIG rest and a pred burst might be in order . . . something like using the dose pack and then over a few days taper down to 10 and then continue to v-e-r-y gradually taper. I think you can interrupt your taper with a burst if you aren't on it too long. I bet Ginny and Lynwood (and some of the others would know more about this technique).

I did similar to you, but with less consequences. Pushed through the holidays and pay for it afterward . . . DUH! It seems I always need to test how far I can push myself and its generally just a bit too much. Lynwood, if I remember right, has a post on "flare care" in the Lupus Resource topic.

I hope you'll keep us posted . . . and I'm sending you a fresh hot pot of tea!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/1/2008 1:47 PM (GMT -7)   
(((Hippi))  I'm so sorry you're having the pred dilema.  A few weeks ago I had to get a pred injection because I just couldn't come out of a flare.  I haven't done the pred dose packs.  My rheumy suggests the injections and continuing the oral pred.  He wants me to taper to 5 mg- all rheumys want this cause our adrenal glands start making their own prednisone when we take 5mg orally or less.  I'm at 7mg right now.  I know your kids are old enough to care for themselves, but as a mom I know you always want to keep an eye on them.  I hope you can get some rest.  (((HUGS)))

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/1/2008 2:17 PM (GMT -7)   
Hippi,

I know just what you are talking about. I, too, am trying to taper down again from my prednisone that I had to start back up with again last July. I was down to 5 mg a day right before Thanksgiving but I started to flare again and my rhuemy upped me to 10 mg a day for the entire Holiday period. She knows that I have out of town family in for Thanksgiving and that we travel to Ohio and sometimes florida for Christmas. I will start my taper down next week. I have to taper VERY slow in order to fool my body so I will do 9mg for a week and then eight for a week and so on.

I think Rosie gives some good advice about upping the pred AND resting A LOT and then start to taper down. One more week or so of a higher dose will not hurt you. My rhuemy trusts me to judge this for myself and it sounds like your rhuemy trusts you with this, too. I was surprised that my rhuemy was so aggressive this holiday season with the increased prednisone but it worked out really well for me. (I even went out for New Year's Eve last night but I am paying for that today!) This is the first holiday season in three years that I felt almost normal. I shocked my kids and my family! However, if I had to deal with no power for four days during all of this plus the travel and the holiday - YIKES. That would not be good. No wonder you are having trouble deciding! (We also had no power in our area from that storm but it was only for one very cold day - we were rather lucky that time.)

Anyway, hippi, I hope you will consider upping the prednisone for a short period. My prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/1/2008 6:59 PM (GMT -7)   
Hi Hippimom!

Sorry, but I vote with the majority here -- stay in bed or on sofa as much as is humanly possible, and bump your pred to 10 for a few days till you feel better.

Otherwise I fear you may fall victim to the flu that several here have gotten...

Take care,

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


townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 1/1/2008 7:52 PM (GMT -7)   
Yes, I have to admit, I think you all are right. I think I may have caused my own flare-up (in September, which became quite serious, 9 day hosp. visit, now can only work part-time) by not increasing when I should have. I was also eager to taper.

Diagnosed with Sjogrens in 1993, Raynauds and Vasculitis in 2001, and Lupus in 2004. Recent serious flare-up of Lupus Nephritis. Current Medications: Prednisone up to 30 mg now, Plaquenil 400mg, plus now a couple of meds for high blood pressure (from the Lupus Nephritis) and one for the heartburn they give me.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/1/2008 7:55 PM (GMT -7)   
Hi Hippi,
 
Yup, I'm with the others too.  We all try and be wonderwoman, but that's not our reality!  I wish it was....... It's never nice to have increase the pred.  I had to last week.  I'm up to 10mg now.  I didn't like doing it, but I knew it had to be done.  It's either that, or live with a horrible flare up that will force you to increase even higher, down the road.  Take it easy okay.  Get that rest, and try to keep the stress levels down.  I hope you can start tapering back down soon.  In the meantime, let the med take care of things, okay....
 
Love ya,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 1/1/2008 7:59 PM (GMT -7)   
Just to add to that - looking back at my own initial advice, I'm interested to see how I didn't learn from my own experience, just as the rest of you seem to have. And I paid the price! Now I'm back up to 30, though trying to taper by alternating days w/ 25. Need to speak with my rheumatologist, who I haven't seen since November, and who I don't have an app't with until Feb. He gets annoyed with me pretty easily, I feel, b/c I don't always understand him, (he has a super thick accent), and I ask a lot of questions and take time to take notes. He's saved my life a couple of times, but I wish he could give me better advice on how to RECOVER from the flare-up, and how to get off the prednisone without going too fast, getting sick. I've been on it since 2004, almost always at least 10.

Diagnosed with Sjogrens in 1993, Raynauds and Vasculitis in 2001, and Lupus in 2004. Recent serious flare-up of Lupus Nephritis. Current Medications: Prednisone up to 30 mg now, Plaquenil 400mg, plus now a couple of meds for high blood pressure (from the Lupus Nephritis) and one for the heartburn they give me.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/1/2008 8:11 PM (GMT -7)   

Hi sweetie, I'm sorry your having such a rough time. But Hey it's a new year and all this holiday stuff is past us! Yippeee. I was actually thinking maybe if you took 10 one day and 7.5 the next and ulternate while you are resting. Try to use ice and heat for the pain. You're right your kids are old enough to handle things. we sure do guilt ourselves alot don't we? pizza and kentucky fried chicken, soup and grilled cheese all sound good to me. Try not to take a bunch of pred. but just a little extra for a few days and rest rest rest!

 

let us know how you are doing

love ya

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/2/2008 8:57 AM (GMT -7)   
Thanks for all the responses and advice. After I posted yesterday and read some responses, I took some time to really think things over and try to decide what would be the best thing for me to do. My joints were hurting so bad that they felt like they were going to explode and I was needing help from my husband to get up off the couch. I bit the bullet and took an extra 5mg of prednisone and within a few hours the pain was much more manageable and I didn' need to take any hydrocodone for a change. By early evening my fatigue was still pretty severe, but I know that's my body's way of telling me how much I need to rest. I think what I'll do is what a lot of you suggested which is to up my prednisone for 5-7 days and try to rest as much as possible. I'm thinking if I don't stay at a higher dose for too long it should be easier to taper back down.

Now that I've upped my prednisone, I think it was definitely worth it. I've got a lot to do around home with lots of things to put away from the holidays, but I keep telling myself that most of it can wait and also that my hubby will be home on the weekend to help with it too.

Thanks for the support.
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



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/2/2008 10:31 AM (GMT -7)   
Hippimom,

I'm so glad you are doing some R-E-S-T (teach your children the ymca REST song, they can perform for you while you are on the couch.)

Trying to 'work thru' pain just sets us up for more pain -- I know it's hard to treat, esp when treatment means a drug you don't want onboard, but pain puts SO MUCH stress on the body that I don't think any amount of rest can really help.

Maybe next time you see the dr you can ask if he suggests something else for the joint pain -- I take a daily prioxicam (feldene) for mine, I suspect there might be other things rather than pred.

Cheers,

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

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 4:48 AM (GMT -7)
There are a total of 2,735,237 posts in 301,285 threads.
View Active Threads


Who's Online
This forum has 151390 registered members. Please welcome our newest member, Clauddfin.
246 Guest(s), 7 Registered Member(s) are currently online.  Details
solia de gloria, reminder, Stanislav, Scarecrow, Traveler, gilly2, ljimd


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer