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Thanks steroids osteopenia (after cumulative 1.5 years use)

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Posted 2/2/2017 10:59 AM (GMT -5)
I just got my verbal DEXA bone density results with osteopenia, thanks prednisone. I've been on steroids a cumulative 1.5 years at various doses since my UC diagnosis. It seems like it isn't anything to be terribly worried about at this point. My doctor recommends a twice daily 600 MGs, of an over the counter Vitamin D supplement. Does that sound about right?

I may not have all of the scores jotted down just right, and I will get a paper copy, but here's my notes.
  • AP Spine -1.7 T-score (ostepenia is between -1.0 and -2.5)
  • Femoral neck -1.0 T-score (ostepenia is between -1.0 and -2.5)
  • Total hip -0.4 Z-score (anything below -0.2 is unusual for age/sex)
Certainly this is a reminder to any of our posters who've used steroids cumulatively for significant lengths should get checked out with a DEXA bone density or similar test. Best to proactively treat these things and limit steroid use as much as is possible.
Posted 2/2/2017 11:11 AM (GMT -5)
Ugh. Sorry to hear that. You just reminded me I'm way overdue for my scan but I've been avoiding it. I'm not sure about vitamin d. I'm deficient and take 50,000 iu per week which is equivalent to 1.25 mg I think.
Posted 2/2/2017 11:37 AM (GMT -5)
I have the same in my hips thanks to prednisone
Posted 2/2/2017 11:56 AM (GMT -5)
just curious how many folks had dexa scans done prior to UC and pred use to establish a baseline -

not a fan of pred (or drugs in general), but there are other factors involved, including having an IBD and genetics -

not saying pred isn't the sole reason, but it does seem that further investigation might prove beneficial if other treatable factors are involved -
Posted 2/2/2017 1:45 PM (GMT -5)
The curent clinical recommendation is to not use DEXA screening in women under age 65 or men under 70 with no risk factors. So i doubt many would have a pre-uc baseline unless they were already within the above mentioned age ranges at uc diagnosis.

Prolonged steroid use is a risk factor and warrants screening regardless of age due to its bone wasting affect.
Posted 2/2/2017 2:17 PM (GMT -5)
Thanks Prednisone mad mad mad devil devil devil
Posted 2/2/2017 3:38 PM (GMT -5)
I've only had one DEXA scan and that was about 3 years ago now. I had osteopenia (dunno exact values, as I never got a copy of the report).

I'm on bloody steroids again, but they're eye drops so hopefully won't have any systemic effects. I really, really ought to start taking a regular Vitamin D supplement, but I'd like to know what my vitamin D level is first of all.
Posted 2/2/2017 3:43 PM (GMT -5)
^The eye drops should have very little (practically no) systemic effects. The drops are a small amount of steroid to start with, and then very little of that is absorbed into circulation.
Posted 2/2/2017 4:26 PM (GMT -5)
My DEXA scan showed osteopenia before my last flare. I was treated with steroids during the flare and a post-flare DEXA scan showed it progressed to osteoporosis. I would recommend consulting with an endocrinologist for this. With an osteopenia diagnosis they won't do any medication but almost certainly will add vitamin D (good for IBD anyway) and possibly calcium. An endocrinologist will know the right amounts of vitamins and how often you should be checked. I didn't start with one until after the osteoporosis diagnosis but am now on vitamin D and Reclast infusions.
Posted 2/2/2017 4:43 PM (GMT -5)
Since we are all talking about how bad Prednisone is www.healingwell.com/community/default.aspx?f=38&m=3755226 which I'm still dealing with.

The best advice is to avoid Pred as much as possible but we all need to get DEXA Scans. I should take my own advice and get one done, especially after needing a new hip because of Prednisone.

Also be careful Pred can trigger diabetes too. I've had to take insulin when I was on Pred the first time. Some people get permanent diabetes from Pred.

This drug is evil.
Posted 2/2/2017 8:22 PM (GMT -5)
The eye drops should have very little (practically no) systemic effects. The drops are a small amount of steroid to start with, and then very little of that is absorbed into circulation.

I am on prednisone eye drops for macula edema that was caused by multiple eye surgeries. I am doing everything I can to get off them but my doctor insists that I need the drops for the ME. I am seriously concerned about stories that steroid eye drops can eventually lead to glaucoma.

fyi, here is my story, as if I need another reason to hate doctors:

iamcurious said...
I try to have minimal contact with doctors for CHRONIC conditions. For example with UC that last time I had to interact with my doctor was to get a prescription for antibiotics. But I recently needed medical expertise for a detached retina which is obviously an ACUTE condition. This was an emergency and I didn't have the time to check out his credentials.

This guy definitely did not reaffirm my faith in the medical establishment. Most doctors seem to be late for their appointments but I would have thought a retinal surgeon would be an exception. I waited 4 hours! in his office before he could see me. Meanwhile the infamous 'black curtain' was slowly descending down my field of vision indicating my retina was coming apart.

That was only his first screw-up. To make a long story short I now have some permanent damage to my eyesight. I decided to travel several hundred miles for a 2nd opinion to perform some auxiliary surgery to fix another one of his screw-ups.

When I returned home the doctor said that I had gone against medical advice (his advice!) and he not only dropped me as a patient, but I am now blackballed from the 4-5 retinal surgeons in his medical practice. This is more than a minor inconvenience since they are the only retinal surgeons in the area. If the 'black curtain' ever returns, in one eye or the other, I would have to travel 7 hours for treatment. Hopefully my eye will hold out.

Posted 2/2/2017 9:44 PM (GMT -5)
I wouldn't get too down about it. You can reverse it with hard work!! I was diagnosed with osteopenia in 2011, osteoporosis in 2014 and then reversed it back to osteopenia by my 2016 DEXA. The lab tech said she never sees it happen without medication but I've never taken a single bone density pill. Just stick to your bone supplements and exercise a lot!!
Posted 2/3/2017 12:09 AM (GMT -5)
That stinks. It makes me wonder how my #s are. Scary stuff. At least it sounds like it's reversible with some hard work and supplements.
Posted 2/3/2017 12:21 AM (GMT -5)

IamCurious said...
The eye drops should have very little (practically no) systemic effects. The drops are a small amount of steroid to start with, and then very little of that is absorbed into circulation.

I am on prednisone eye drops for macula edema that was caused by multiple eye surgeries. I am doing everything I can to get off them but my doctor insists that I need the drops for the ME. I am seriously concerned about stories that steroid eye drops can eventually lead to glaucoma.

fyi, here is my story, as if I need another reason to hate doctors:

iamcurious said...
I try to have minimal contact with doctors for CHRONIC conditions. For example with UC that last time I had to interact with my doctor was to get a prescription for antibiotics. But I recently needed medical expertise for a detached retina which is obviously an ACUTE condition. This was an emergency and I didn't have the time to check out his credentials.

This guy definitely did not reaffirm my faith in the medical establishment. Most doctors seem to be late for their appointments but I would have thought a retinal surgeon would be an exception. I waited 4 hours! in his office before he could see me. Meanwhile the infamous 'black curtain' was slowly descending down my field of vision indicating my retina was coming apart.

That was only his first screw-up. To make a long story short I now have some permanent damage to my eyesight. I decided to travel several hundred miles for a 2nd opinion to perform some auxiliary surgery to fix another one of his screw-ups.

When I returned home the doctor said that I had gone against medical advice (his advice!) and he not only dropped me as a patient, but I am now blackballed from the 4-5 retinal surgeons in his medical practice. This is more than a minor inconvenience since they are the only retinal surgeons in the area. If the 'black curtain' ever returns, in one eye or the other, I would have to travel 7 hours for treatment. Hopefully my eye will hold out.

While steroid eye drops have very little systemic risks, they could and do have localized unwanted effects in the eye, including the increased risk of glaucoma. But I don't know just how much of a risk that would be. It would depend on how strong your drops are, how often you have to use them & for how long, etc. I don't know the numbers there. If you need them for something, you might not have much choice but to accept those risks. Again, this isn't an area I know much about. Have you gotten a 2nd opinion about the long-term use of the steroid eye drops? If both docs agree you really can't do without them, then you're probably stuck with using them.
Posted 2/3/2017 10:10 AM (GMT -5)

Bacon Girl said...
I wouldn't get too down about it. You can reverse it with hard work!! I was diagnosed with osteopenia in 2011, osteoporosis in 2014 and then reversed it back to osteopenia by my 2016 DEXA. The lab tech said she never sees it happen without medication but I've never taken a single bone density pill. Just stick to your bone supplements and exercise a lot!!

Encouraging thanks Joanna!
Posted 2/3/2017 10:14 AM (GMT -5)

notsosicklygirl said...
That stinks. It makes me wonder how my #s are. Scary stuff. At least it sounds like it's reversible with some hard work and supplements.

Kara since your schedule is now completely doctor-appointment-free, perhaps you should just schedule a darn Dexa haha. I know you fought UC hard for years and no idea what your cumulative steroid use was. Catch it early and fix it if your bones are even just a little weak.
Posted 2/3/2017 10:37 AM (GMT -5)
Great news bacon girl!

I had osteopenia on my last scan. I've been doing exercise and supplements and nutrition to improve. I have a family member that is a dentist and they are very against the osteoporosis drugs. Lots of risk for little benefit unless you are to the point of very high fracture risk. Also where doing exercise and diet can help you maintain bone density long term, the drugs have shown no benefit once stopped, and the osteoporosis usually returns by next scan.

My GI was certain with my history and frame that I would have osteoporosis at last scan. I took calcium and exercised a lot when well and between all my surgeries. I think it could have been the difference of what kept me at osteopenia.
Posted 2/3/2017 4:33 PM (GMT -5)
The dentists are against the osteoporosis drugs because they carry a risk of jaw necrosis which can cause major problems if you are having major dental work (i.e. extractions) done. I was on oral bisphosphonates for a year and a half and they did virtually nothing per my most recent bone scan. I've been switched to Reclast, which is an annual infusion. If it's able to improve me back to "just" osteopenia then I'll be taken off medication. Exercise, particularly weight-bearing exercise, can be a big help.
Posted 2/3/2017 6:25 PM (GMT -5)
Husband was diagnosed with osteoporosis after 2.5 years on prednisone. The radiologist actually misread the DEXA scan and summarized results as being normal, which we relied on. When we saw the endocrinologist last summer, she told us that based on the T scores the diagnosis was osteoporosis and radiologist made mistake. Still need to follow up with hospital on that one.

Husband is taking 600 mg of calcium citrate 2 x a day, plus 5000 mg D3. (Higher D3 than what is usually recommended for osteopenia /perosis due to neurology issues).

Endocrinologist has advised "Reclast" for the osteoporosis. I have been advised by a friend who specializes in bone diseases that Reclast is generally well-tolerated and effective for steroid-induced osteoporosis. Husband hasn't taken it yet.

Prednisone was a lifesaver in terms of keeping UC symptoms in check, kind of, and even though GI mentioned potential downsides / side effects, I don't know that it would have caused my husband to stop.

Osteopenia doesn't always turn into osteoporosis.
Posted 2/3/2017 8:01 PM (GMT -5)
Ill try to remember how they explained it to me but essentially the bisphosphonates interrupt the bodies natural bone cycle. So in someone that has osteoporosis from prednisone and is still young it may be more harmful than helpful. The example they used was a patient on the drug had a tooth extraction, only one tooth but the bone would not repair itself at the extraction site. The thinking is because it inhibits the osteoclasts from breaking down more bone, then it is inhibiting what triggers the osteoblasts to build more bone. Interrupting your bodies natural process.

Now if you are older at high risk for fracture and not able to do weight bearing exercise there may be benefit from stopping the osteoclasts. This was explained to me for the opinion of someone under 50, who is still active, and likely has osteoporosis bc of steroids.

And with all that said I did have a tooth extracted a few months prior to my bone scan and only supplemented calcium and vitamin d. My bone completely healed at my extraction site.
Posted 4/6/2019 8:11 AM (GMT -5)
IPoop,
I have osteopenia as well, holding steady over the past 13 years (this is my fourth scan), but I just found out my femoral neck t-score is - 2.4! That scares me! My total hip is - 1.4 and my spine - 1.9, which to me isn't that horrible considering all the times I've taken prednisone for flares. I haven't spoken to my PCP yet about the results, but when I do, I want to ask him if I should see a specialist. I really am nervous about my hip joint breaking, and how to strengthen it so I don't.
This is all from pred I know for certain, and now that I'm entering menopause-oh boy!
Also, I wonder if it's safe to continue with hydrocortisone enemas, even tho the amount absorbed is small (I think it's 10 mg)?
Posted 4/6/2019 9:29 AM (GMT -5)
Ipoop sorry to hear but good that you caught it relatively early.
My dexa scan (@19 months on pred) showed z=-2.5 in my hip (osteopenia) and z=-4.8 in my lumbar spine! I am 37....I am taking vitamin D at a dose of 880 and 500mg calcium. I tried going higher with the calcium but got upset stomach so trying to do the rest with diet and exercise which is not easy when you're also intolerant to dairy. My GI put me on another biologic called prolia which is a subcutaneous injection every 6 months. I freaked out when i read about the possible side effects of prolia but the dr calmed me down and said i really needed it and he had sought advice from the bone metabolism experts at the hospital (im at an academic hospital so they consult across departments a lot ). Even in my severe case he told me it is reversible "to a large extent" but no point in.checking for a couple of years because it's very slow.
Posted 4/6/2019 10:48 AM (GMT -5)
This is an old post. john, were you able to get checked again since then to see if your efforts have made positive improvements? I haven't been checked with a scan recently. Actually, I don't think I've had one since I had my baseline, way back when things got nasty with pred.
Posted 4/6/2019 11:09 AM (GMT -5)
No new DEXA scans since.

Poopydoop, I'm not super familar with the values. I know I just barely qualified. If you're worriee then mention it to your doctor. A feq mentioned boniva here, a medicine for bone loss. My doctor just said take a combined vitamin d and calcium tablet daily, which I do. Keep up with light excercise too.

Osteopenia isn't nearly as bad as osteoporosis is. Not a reason to panic though.
Posted 4/6/2019 11:23 AM (GMT -5)
Thanks, i don't have much feeling for the values either except that >2.5 is osteoporosis and my medical notes said "serious osteoporosis".

The problem with prolia is that some patients get rebound fractures in multiple vertebrae after stopping, in other words you regress to the state you would have been if you'd never taken medication. After a ton of googling I found that it happens in just a few percent of patients and was most likely to happen if you already had a fracture prior to starting the medication. Upon googling i also found patient reviews which said they had terrible pain in their legs and prolia ruined their life etc etc. So i was very afraid to take it. My GI did take a lot of time to discuss it with me and offered to send me to the bone metabolism expert if I wanted to discuss it directly with him. but they were very adamant that 1. It was too risky not to treat this with medication (and i live in a country which is relatively conservative about prescribing expensive drugs) and 2. This was the safest option given my age and the possibility of pregnancy in the future. They said bisphosphonates are transferred to the fetus during pregnancy. Also i read up about bisphosphonates and seemed the side effects could also be unpleasant (including irritation of the oesophagus - no thanks when i already have a digestive disorder). So anyway I decided to trust my GI with regards to the medication but next time i see him i would like to ask for more guidance with exercise e.g. is it safe for me to jump up and down? Go climbing? I don't really know how careful i need to be.

He also said that upon stopping prednisone there is in any case a rebound in bone density, which should help.

Thanks smile
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