Steroids and Osteoporosis

[stephwest]

I got results of A DXA (short for dual-energy X-ray absorptiometry) scan today from my GPA medics confirming borderline Osteoporosis caused as a side effect of Pred --- can you imagine the shock--- warned not to overdo exercise which may cause fractures, recommended to take D3 + Calc (more f*** pills) they reduced Pred from 20mg to 15mg ASAP and to 12.5 in 4 weeks.
Muscles already weakened and now this.
Am losing weight down to 61kg.
Has anybody else got Osteoporosis or brittle bone and what has been the outcome????
All best
Stephen

[Pete]

I had osteopenia when my first dexa came back. I've been taking the calcium/D pills, and the second dexa showed no change. I'm supposed to have another dexa in August.

[annekat]

I think that's a problem for a lot of us, and some of us are already predisposed to osteoporosis. I can't report, as I haven't had a bone density scan since before I knew I had Wegs. I had some osteopenia in my upper spine. I take Calcium and D3 along the bone-building supplement Fosamax (alendronate sodium) but have been slacking off on the Fosamax as I've been taking it for several years and there are some warnings and possible negative effects from it.

What I've been wondering just lately is, does anyone know, could the prednisone be causing or contributing to the bone erosion many of us have had in our sinuses? Or would that have happened anyway due to the damage caused by the disease?

[pberggren1]

Strontium is key to bone support.

[KimH]

Hi I was just diagnosed with a compression fracture of L1 and L 2 . I was not doing anything more strenuous than yoga and weeding my garden. I was hoping to be able to get my body moving and that is delayed. I start physical therapy and I am looking forward to learn safe exercises. My doctor is ordering a bone scan and we will decide on meds and/or supplements. The three years of pred has turned my bones into swiss cheese. LOL. Perhaps you can also look into physical therapy and learn safe ways to rebuild your muscles. Next time I am in Wexford or Galway I can share with you some exercises.

[drz]

I got results of A DXA (short for dual-energy X-ray absorptiometry) scan today from my GPA medics confirming borderline Osteoporosis caused as a side effect of Pred --- can you imagine the shock--- warned not to overdo exercise which may cause fractures, recommended to take D3 + Calc (more f*** pills) they reduced Pred from 20mg to 15mg ASAP and to 12.5 in 4 weeks.
Muscles already weakened and now this.
Am losing weight down to 61kg.
Has anybody else got Osteoporosis or brittle bone and what has been the outcome????
All best
Stephen

After my last bone scan I was advised to continue on the generic Fosomax which I had hoped to get off after three years. After long term use it can cause the very problems it seems intended to prevent. I am careful to try avoid falls since I was warned I might shatter like an egg. So far no breaks, but lot of dental problems and issues as my teeth often shatter and fall apart.

[Jaypfei]

Three MRI's and found out I had seven bulging disks, severe osteoporosis , osteoarthritis and scoliosis. The bulging most likely due to years of heavy lifting. The significant loss of bone is due to hereditary disposition for osteoporosis , but neurologist did say that prednisone was also a factor. Gotta love prednisone! I've been taking a drug called Forteo. I just past my first year and now have till April 2015 and hopefully will never have to take another osteoporosis drug. Forteo was designed primarily for cancer patients. But with some of the drugs we have to take its an option for us. Yes, with any drug there are possible side affects, but I felt it was worth the risk. Especially after I fractured a rib leaning over the tub.

[annekat]

I wish more of our docs would mention Forteo, or the strontium that Phil mentioned, in case they might be options that would work for us. Many of us are at an age where our bones are thinning anyway, especially if we are small boned and genetically predisposed, as I am, too. So all the pred we take is adding insult to injury. Yet we don't want to take things that may harm us, and Fosamax makes me nervous. I may have been on it about 5 years, since I was on it pre-Wegs. My doc says 5 years is the limit, and I've been taking it under his care for 3 years, but then he barely acts like he's listening when I say I was already on it before I got to him. I think I can make an executive decision to stop taking it. I've researched strontium a little on the web and there were some warnings, but I need to pursue it further. You are right, any of these things carry some risks. I guess I need to figure out how long I've been on Fosamax, which I've already pretty much quit, BTW, although I lie to my doctor's nurse when she asks if I'm taking it. And I obviously need to get another bone density scan as it hasn't been done in maybe 5 years.

[Miska]

How long were you on pred? I have been on 60 mg for almost a year finally tapering and as of today on 15 mg a day. Think I should ask MD about bone scan.

[Jaypfei]

I'm really surprised that Drs don't automatically order Bone density tests for patients that have been on long term high dose steroids. I was going to say that it seems the logical thing to do, but there lies my answer. Lol!
I have been on and off high doses of prednisone since Feb 2012 thru Nov 2013. The longest was from Feb 2012 till Aug 2012. That was at Dx's and while under the care of pulmonary doc. Off and on again from Oct 2012 till Nov2013. That was with EX-rheumy.

[annekat]

The only medical professional I have who acts like a doctor should is my PCP, a PA. But she isn't a doctor and knows next to nothing about Wegs, nor does she want to take on the responsibility for overseeing my treatment for it or learning much about it; she feels it is over her head. So she handles my general stuff like yearly exams, mammogram referrals, etc., but goes to extra effort and thinks of things like bone density scans, which was pre-Wegs, and other tests and things that should be routine for someone my age. Yet I feel I need a different PCP, a real doctor, who knows something about Wegs and can make sure the Wegs people are covering all the bases.

[windchime]

Anne I agree with you. It may be difficult though to find a PCP that has the knowledge, but certainly worth a try. Maybe you can contact your specialist office and ask them for some ideas. That's a good starting point. A lot of people let their rheurmy direct their case. Just some ideas to start you off. Good luck.

[annekat]

Anne I agree with you. It may be difficult though to find a PCP that has the knowledge, but certainly worth a try. Maybe you can contact your specialist office and ask them for some ideas. That's a good starting point. A lot of people let their rheurmy direct their case. Just some ideas to start you off. Good luck.Unfortunately, I don't have what I'd call a specialist office... the pulmy who treats me wouldn't even refer me to an eye doc for my double vision, told me to have the PA do it. It's very straight and narrow with him and I'm expected to take care of any peripheral details. So I don't think he'd find me a new PCP; besides, I need to replace him, too, preferably with a rheumy, who as you say, might end up overseeing my WG care. My ENT referred me to an eye doc and is the best bet right now for helping me find a rheumy; I'm not so sure about the PCP issue, but I could ask. Possibly a new WG-savvy rheumy would be the one to ask about that. Thanks for your ideas, they help me sort things out.

[Alysia]

I read this thread yesterday and at that moment went to my GP. (she is always getting me in out of line, and whenever I need, VIP - weggie -me :wink1: ).
I am on pred constantly :love: almost 2 years (mostly 5 mg, sometimes more) and before that on changing doses from time to time, (at the beginning couple of months on 60mg), and still I never got prescription of any of the above, by all my docs.
SO I went to ask her. she gave me (for the first time! ) referal for bone scan and she said that after we will get the results we will think if I need something. she said that I will take something only if there is something wrong in the bone scan and only after consulting with endocrinologist.
well, I hope the bone scan will be ok....

[Alysia]

Strontium is key to bone support.

I asked my GP about it. she didnt know anything. she promised to search about it and then to tell me more. are you taking it as a supplement ?

[jvilner]

I just did it as infusion cause pill form will only irritate my esophagus and swallowing problems. It's 10 days later and I'm still feeling residual side effects.

[stephwest]

Strontium is key to bone support.

Have you seen the side effects of Protelos 2g granules sachets
Common: More than 1 in 100 people who take Protelos

abnormal laboratory test results

altered level of consciousness

dermatitis (http://www.medicines.org.uk/guides//dermatitis)

diarrhoea (http://www.medicines.org.uk/guides//diarrhoea)

eczema (http://www.medicines.org.uk/guides//eczema)

headaches

heart attack (http://www.medicines.org.uk/guides//heart%20attack)

loose stools

memory loss

nausea

thromboembolism of the veins including pulmonary embolism

Uncommon: More than 1 in 1000 people who take Protelos

seizures

Protelos contains:

aspartame (E951)

maltodextrin

mannitol (E421)

strontium ranelate (http://www.medicines.org.uk/guides//strontium%20ranelate)


All best
Stephen (trying not to break a leg)

[LisaT]

I just added this to my ever-growing list of questions for my next appointment. I think I will tell my GP's office they'd better book me two timeslots… or she will be behind for the rest of the day! :rolleyes1:

[marylz]

I was dx with Wegs in Feb 2013. After getting out of the hospital they told me to get a bone scan so they would have a starting point (I know that the not the right term, but you get the gist.) Now it's a year later and they had me get another one...the spine was the same ( with osteopenia ) and my hip had improved! So I guess they plan on me having the scan once a year.
I am also still on 10 mg pred, Calcium and Vit D as well as Boniva once a month as well a multitude of other meds!

[pberggren1]

I prefer to stay natural. I take 500mg of Cal/Mag Citrate, 4,000 IU of Vitamin D with meals. Then take the Strontium at night.....340mg.

[drz]

Unfortunately, I don't have what I'd call a specialist office... the pulmy who treats me wouldn't even refer me to an eye doc for my double vision, told me to have the PA do it. It's very straight and narrow with him and I'm expected to take care of any peripheral details. So I don't think he'd find me a new PCP; besides, I need to replace him, too, preferably with a rheumy, who as you say, might end up overseeing my WG care. My ENT referred me to an eye doc and is the best bet right now for helping me find a rheumy; I'm not so sure about the PCP issue, but I could ask. Possibly a new WG-savvy rheumy would be the one to ask about that. Thanks for your ideas, they help me sort things out.

Due to the variety of health issues we are likely to have we also are likely to deal with a higher number of medical specialists than many other people. I think it is helpful to try clarify in your own mind what you expect from each health care professional and to share that with them. I expect my internist who I see for general things to handle most of my prescription renewals and to advise me about what general evaluations and procedures I may need. My endocrinologist to handle any diabetic supplies and A1C lab work, my eye doctor to handle eye drops, my rheumatologist to prescribe my maintenance drugs for Wegs and to order my monthly labs to monitor my condition, my Weg expert and other specialists to consult and offer recommendations to my other doctors who will prescribe and order any procedures I need in their opinion but some times things get blurred or messed up. I have had to at times ask my ophthalmologist to order some extra lab work when I feared I might be having an increase in inflammation or an infection as I was seeing her that day, and to ask my internist to order some diabetic equipment when my regular endo moved away with no warning.

At any appointment I tell the doctor my expectations and desires for our meeting and ask if they have any other topics or issues we need to look at during my appointment. That way they know if my issues have been adequately addressed. And also at end of each visit we discuss when I wish to return and when they think I should return to see them again. I also ask at the beginning if they have received lab results or reports from other specialists i have seen in the interim since our last visit. It takes some work and organization on my part but helps reduce confusion and frustration for both of us so I now view my health care team as being appropriately responsive to my needs.

I didn't do this as well before my diagnosis of Wegs and was too passive in accepting their lack of helpful answers to my concerns. And it almost killed me so I am now a lot more insistent on getting my concerns addressed so I feel comfortable with the answers and recommendations. I feel I have too do this to safeguard my health and life since my doctors have told me I am unlikely to survive another attack of Wegs as serious as the one that finally resulted in my diagnosis of Wegs. Too much complacency can kill us so we need to be own advocate, or else get a good advocate to help us deal with our health care systems. We should all have a back up one in place in case we are too ill to advocate for our self too.

[jvilner]

Nicely put. You are an experienced weggie!

[Michael Bell]

Hi, I was diagnosed with ostioparosis due to the pred. Doctor has put me on 1 alendronic tablet a week and I take a daily vit D tablet. So far no change but due another scan in November.
Mike

[LisaT]

Very good point about having someone lined up to advocate for us in case we're ever not well enough. I've been meaning to jot down or discuss some things with my hubby because there's so much to know... I have a lot of it on my medicalert record but it would be good for him to know more details as well.

[Lilly]

Hi Stephen, I have been on pred. for 24 years. Inbetween flares, I stay on 5 mg. If I stop completely, I flare. Therefore I had my last Dexa scan 3 yrs ago, and was told I was borderline, like you. So a year ago, I was with a friend from Church to watch him and his son ride dirt bikes. He asked me to sit on his bike while he helped his son with his helmet. So I was sitting on it wishing I knew how to ride, and like a kid, revving up the bike a little, vroom, vroom, and then I vroomed too much and it took off with me, I did a wheelie which made my hand turn the handle more and it went faster! Finally, I just let go and tried to jump off, and the bike fell on me! LOL!!!!! (If you knew half the goofy things I have done, you would be laughing too!) Well, my friend was terrified, got the bike off me, and assessed my damages. Other than a couple of bloody shins, my wrist hurt. I went to the Dr. the next day and of ALL the bones in your hand, I broke the tiniest, and most difficult one to heal. The dr did the surg and wired it togather. Thankfully it healed. She scolded me, because I had already been to her because of a broken wrist she put a plate and screws in. And Hip shots for pain caused by the beginnings of osteoporosis, She has X-rayed my a few times to see if my back is beginning to have little cracks, when my back was hurting really bad one time. So I am VERY careful when I do things in the yard, I am careful when I play football with my pre-teen nephews, (sometimes I run FROM the ball) So Don't get real discouraged, just take your calcium +D, which I take too, eat REAL food with calcium, which is better than the vitamin. Im not sure about your weight loss, I wish I would lose some weight, (actually I have, but I stopped eating processed sugar and all bread and lost 20 lbs. YAY!!) But Im wondering if your weight loss could be from worry? The decrease of your pred is the best thing. Hopefully you can do well on the lesser dosage. Stephen, My biggest worry is that I will just accidentally fall and break a hip. I am truly terrified of that. But I don't think mine or your bones are that brittle yet. Just Keep on Living, just know that this would happen to us anyway without wegeners and pred. Just we got it earlier. You may not be able to OVERDO exercise, but you can still do it. In fact, it actually helps osteoporosis slow down, and your bones become stronger. I sure hope you wont let this worry you too much. I am 48 and am just careful, and don't get on dirt bikes anymore. HeeHee........Nice to meet you! Take care, and I hope you can stop worrying. Its not good for wegeners!! :-)

[mrtmeo]

I was able to reverse some of my mom's osteopenia prior to being treated for vasculitis because she has been on a steroid inhaler for years.
I had her eat 7 prunes per day for a few months.
I don't think her kidneys can handle this now, but I use boron instead because that seems to be the component that helps the bones, as well as adding D3, Magnesium and Calcium.
Here is a study showing how 10 prunes per day reverses osteoporosis, however, I don't know if this still works when someone is on prednisone.
No bones about it: Eating dried plums helps prevent fractures and osteoporosis, study suggests -- ScienceDaily (http://www.sciencedaily.com/releases/2011/08/110818093048.htm)

[morningsunshine]

This thread was definitely enlightening! I'll definitely buy some prunes soon.

I had no idea that getting a bone density scan was an option--I'm seeing my rheumatologist tomorrow and will ask him about it then. I do know that. My blood calcium levels are high.

I've been taking calcium + vitamin d since I was diagnosed 3 months ago (recommended to combat the effects of prednisone). At my last appointment, my rheumatologist recommended getting an infusion of reclast to help prevent osteoporosis. He also offered the option of a once-a-day pill, but recommended the reclast infusion since its effects last for a year. I'm not too keen on infusions, but his advice has been great so far. I'll get that infusion in a week or so.

Does anyone have experience with reclast?

[annekat]

The dried prunes thing caught my eye, too. My mom used to buy them for snacks for us when I was a kid. They weren't bad to munch on. It's got me thinking I should look for them in the store, though I don't remember seeing them anywhere for a long time; then again, I haven't really looked.

[Debbie C]

I like plums but I hate prunes..I wonder if that makes a difference when you eat them ? And wounldn't that cause one to have diaherra, eating that many prunes a day all the time ?

[annekat]

I like plums but I hate prunes..I wonder if that makes a difference when you eat them ? And wounldn't that cause one to have diaherra, eating that many prunes a day all the time ? Yeah, I wondered about that, too. I don't think we ate a lot of them at a time when I was a kid. I saw them in the store, today, in Target's grocery section. Didn't buy any because I'm watching pennies at the moment, but Target has their own house brand of prunes. I would go easy on them and see what happens.

[jvilner]

I did the infusion last May. A day after I felt crummy like the flu for 48 hrs. Had some aches and pains a month afterwards but all ok now.

[morningsunshine]

Thanks for sharing your experience! I'll prep myself for aches and pains...although I'm already having them from MTX and prednisone tapering, so hopefully they aren't much worse.