Prednisone vs. Bone Health

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Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 5/18/2010 2:32 PM (GMT -7)   
I've been trying to come down on my prednisone dosage following my Drs directions.

At 5 mg regularly I felt "alright", but nothing very fancy.
At 4 mg about the same, but less energy.
At the point of alternating 3/4 mg, I might as well have some terrible sleeping disease. No energy or motivation to get up off the bed or sofa....a large immobile lump. No fun.

Today I said 'h3ll with it', and took an *extra* 5 mg. WuWee! I feel like myself again. Even managed to do a couple of scary errands on my own. (Scary being defined as having to find something in an area of town I've never been before.) Had enough energy to get out "in the world" and back without any issues at all.

So I'm wondering what other people have experienced when trying to get under the 5 mg amount. Do you have any energy? Did your Dr ever do any adrenal gland performance tests to see if things are working? Or are we all just gritting our teeth and doing it because they say it's best?

I'd like to make my own choice when it comes to prednisone vs. bone health. If being off prednisone means day after day of no energy and no motivation -- I'll gladly risk weak bones. Calcium and Vitamin D supplements for sure! Weight bearing exercise is great, but I can't do it without the prednisone!!

What kinds of bone support have you guys gotten from your doctors? Bone density tests for sure, but any tests to measure calcium levels? Calcium shots, supplements, Vitamin D supplements, anyone offered any other kinds of support?

Maybe I'm the only one, but I'd gladly take 5 yrs of energy + 5 of being bone-fragile vs. 10 years of being asleep. What do you guys think?

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 5/18/2010 3:23 PM (GMT -7)   
I'm in complete agreement with you Lynnwood. I've been on prednisone for 10 years now. I can't live without it. I get the same symptoms you do if I'm at 10mg or lower. I went up to 15mg a couple days ago because my joints were sore and I was having a lot of fatigue and nausea. Typical flare symptoms. As soon as I took that extra 5mg I felt like a new person!

I've been on Didrocal for these 10 years. It's a bone metabolizer. I take 1500mg of calcium and 1400mg of vitamin D every morning.

I used to get a bone density test every year, but for the last 5 years, it's been 100% normal. So I get the test done every 2 years now.

I get my blood calcium checked once a year.

I've had some bone fractures during all this though. Both feet with multiple stress fractures, and some ribs. LOL. That was 7 years ago. For some reason, my bones have improved over time instead of getting worse. Go figure!

Definitely, in my opinion, the benefit we get from prednisone far outweighs the bone issues. I'm a lifer. Hehe.
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 5/18/2010 6:55 PM (GMT -7)   
Thanks for the information, Ginny. I had not heard of the Didrocal before -- I read the dosing instructions -- do you have any trouble taking night meds (like for sleep!) with this?

I'm glad to hear there *are* Drs out there doing the Blood calcium tests.

Anyone else?
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 5/18/2010 7:15 PM (GMT -7)   
There are no interactions with Didrocal that you have to be concerned about except for the first two weeks of each dose pack (which is a 3 month pack). Those first two weeks, you can't take any iron suppliments or eat any dairy within two hours before or after taking the Didrocal. Once those two weeks are up, you can take it any time, with anything. It doesn't upset the stomach either.

I was on Fosomax early on and it didn't work well for me. I couldn't lay down for 1 hour after taking it and it did upset my stomach. Didn't do the job as well as the Didrocal has done for me.
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 5/19/2010 3:41 AM (GMT -7)   
Sorry Lynnwood, I haven't gotten down to that dose yet!! I wish I had some advice. I do agree with both of you...I THINK I would take the risk of bone issues over feeling like crud with no energy. Hope other people come along with some suggestions or experiences for ya!

BonRu
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/19/2010 7:03 AM (GMT -7)   
This is good information. I'd been on 5mg a day for about 6 years, but my doc took me off it because the bone density came back 76% from the normal 100% the year before. It took forever for my body to wein off it, but now my cell counts are an all time low, and the results show SLE and Sjogrens are pretty active. My bones are slowly improving, but I feel like total crap sometimes, so I'm trying to weigh the pros and cons. Plaquenil and Celebrex daily aren't doing the trick these days; this winter has been the hardest ever. I got some Prednisone this week; maybe that's just what I need. Thanks for your insights; I was very concerned about the bone weakening issues, and y'all have given me some positives to cling to.

Thanks,
BonRu

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 5/19/2010 7:22 AM (GMT -7)   
I was on 25 mg steroids yrs ago for a blood disorder......If you stop it cold turket it can cause you to get pnuemonia,keep tapering 1/2 pill at a time...I ran out one time & the man I was wed to redused to get it refilled & I spent 2 weeks in the hosp.with pnuemonia......
Yes it can wreak havock with your bones.At age 26 I was diagnosed with Osteoporosis........
Steroids is nothing to mess with.........It's a good medication for whatever you need it for then get off it if you can..........
SnowyLynne


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 5/19/2010 8:38 AM (GMT -7)   
DO NOT EVER STOP PREDNISONE COLD TURKEY.
((Unless you've been on a short & high burst AND your doctor says so.))

Follow your Drs advice carefully when coming off of prednisone. Pneumonia is nothing compared to the HEART FAILURE that can occur!!!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/19/2010 10:13 AM (GMT -7)   
I've been on Pred daily since the beginning of Feb, anywhere from 5 - 20mg. I cannot seem to get below 7mg without the pleurisy coming back. But I don't see it helping my fatigue levels, maybe because I just came out of a flare from H%^*!!!! Anyway, it's good to know there are bone metabolizer that will help. Guess I really need to start taking calcium everyday, already take Vit D. Great topic Lynnwood!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 5/19/2010 11:15 AM (GMT -7)   
I'm with you Lynnwood!!  I've been on the pred for a little over a year now and I have tried soooo hard to come down below 5 mg and I just can't without feeling like crap!!  I saw my rhuemy this last week and she was happy that I wasn't increasing the dosage, but to be honest, some days I do pop an extra 5 mg and it makes the world of difference on my daily accomplishments.  I know what it can do to the bones, and I have felt weakness some days in the legs and hips, but I try and take the calcium and vitamin D daily and hope for the best for the future.  Heck, none of us know from day to day what the future will bring, but I refuse to live in misery and discomfort daily.  I want to embrace each day, not dread it because of a prednisone taper side affect.  I wish you luck, but like the others say, you have to weigh the consequences of the drug vs. the quality of life.  I figure either my joints are going to suffer if I don't keep the inflammation down, or my bones will if I don't reduce the pred.  Neither of it's good.  Sometimes I am just thankful that I wasn't born 80 years ago when they didn't have all the drugs available to treat this disease. 
 
Hugs and Angels
Lynnette

blue_eyes
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/29/2010 7:11 AM (GMT -7)   
Hi everyone
I was on predisone for a year and a half at 20mg and have been off of it for about 3 weeks now and I have been experiencing horrible pains in my right hip. I'm having a very difficult time walking!!!!! I have always had pains in my right hip, my toes and fingers, but when I'm on predisone and I take extra strength tylenol or tramacet then there is a bit of relief!!!!I fully understand predisone isn't good and effects alot of other organs, bones and so on, but at least there was a bit more energy to be able to do stuff...... I'm glad I found this site to be able to know that there are others that understand and don't judge. Hope everyone is having a good day!!!!!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 5/31/2010 6:11 AM (GMT -7)   
Hi Everyone. Years ago the first symptom I had with lupus was major depression which was then followed by varied neuro issues and then flares. Several months ago I tried tapering off my pred and by the time I was at 1mg I was in a deep depression. I stopped talking to everyone, even the forum. My psychiatrist put me on as many psych drugs as I could choke down. (I'm still on them) My rheumy increased my pred and told me to stay a 5mg so I could live happily ever after. I find it so interesting how stopping pred effects each of us, but hey, that's lupus!
 
Lynnwood I'm sorry you had to run errands alone sad   Love, Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/31/2010 9:18 AM (GMT -7)   
My PCP told me that 5mg is not so bad a dose to stay on indefineately. It really doesn't cause that much damage. Every time I've tried t cut back to half of that, I immediately get red swollen painful joints in my fingers and hands, so go figure. I guess 5mg is better then the 10 to 20 I was on, for sure.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/1/2010 7:46 AM (GMT -7)   
Lynnwood, my rheumy told me the same thing Jennifer just wrote - that being on 5mg is ok because that's the amount that your adrenal gland produces. I was so sick of it, though that I was determined to wean myself off it, but would wait two or three months and drop about 1/2mg, wait another 2-3 months and drop another half. It took me a year to do it, but I did it & took my last pill last December.

I've had two bone density tests in the last few years. I take plenty of Calcium plus on Saturdays I take an Actonel for bone strength.

Bone loss is no laughing matter. During the foot surgery I had last December, my surgeon took bone from my heel and fused it to the joint of my big toe. He put three screws in the toe joint. After 3 mo. the bone had not fused and one of the screws broke. He believes the screw broke as a result of the bone not fusing, and most likely the bone didn't fuse because of my steroid use. It is finally starting to fuse, but here I am, six months later, still spending a good amount of time in bed. If I have to walk any distance, I use an orthopedic boot. And I have constant pain. I just hope this isn't going to continue for the rest of my life. I'm very limited as to what I can do.

My hunch is that your lupus is not ready for you to wean off the prednisone. When I did, I felt no side effects whatsoever.

Good luck Lynnwood.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/1/2010 6:29 PM (GMT -7)   
I am still on 20mg pred and my bone density test showed osteopenia. I have to ask about that Didrocal I ran out of calcium and can't afford to buy any this pay period. I wish it could be prescription strength like my vitamin D is. I may have to get my doctor to prescribe vitamins. I worry about my bone health but the truth is I can't drop my dose no matter how much I want to becasuse the CNS issues get worse if I do. They were getting better on 40mg but I gained 30lbs in 2 weeks. I am slowly losing that gained weight. I wish it came off as fast as it goes on.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

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