Prednisone vs. Bone Health

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.

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.

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

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!!!

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

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   Love, Donna

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