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DEXA results concerning me

I finally got my DEXA results and I'm a bit concerned.  My T score on my back was -2.2 and on my right hip was -2.3 but she said just to keep the calcium and Vit D like I am doing BUT -2.50 is full on osteoporosis.  Those numbers seem very close to me especially given the fact that I'm on high dose oral steroids multiple times a year.  The GYN was awful-lets just say I was a ton less than impressed with her and won't go back.  Any of you that have had DEXA-opionions????

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  • K8sMom2002

    Lynn, I moved your great question into its own new topic.

    Hugs on the concern and the underwhelming visit — I totally get that. It sounds like the GYN wasn't really grasping that you've had repeat oral corticosteriods several times a year and you're more likely to have another round of steroids. 

    Could you talk to your pulmo and ask whether an endocrinologist or rheumatologist could review your labs (curbside consult as a courtesy) to give some input? 

    Either of those specialties might more immediately grasp the impact of repeat oral corticosteroids on someone who already has bone density issues.  

    A courtesy consult would mean that you wouldn't have to schedule yet another appointment. Sometimes when docs see off labs in something that isn't their specialty, they reach out to a person that WOULD know and just ask for a quick opinion. If the specialist thinks it's something that is best followed over time, even for a year, the doc will let your doc know that.

  • Pljohns

    Thanks Cynthia-I pulled my DEXA from 2 years ago and I've definitely had a pretty significant decline in my osteopenia-at the rate I'm going, it will be full on osteoporosis by the next DEXA.  I'm already taking 1200mg calcium and 400mg Vit D and obviously it hasn't slowed it down any. 

    Unfortunately, Endo and Rheum. around here are a min of 6 months wait just to be seen and endo doesn't want to see you if they can't cut on you-they have even referred the diabetics back to the PCP's unless you have an insulin pump.  I may call the GYN's office and ask her to call me back to discuss my concerns.  The office visit was just awful-waited over an hour, she spent less than 10 min with me and was out the door-obviously hadn't looked at my history or anything because of some of the statements she made.  I don't see my pulmo until late Aug but I'll definitely mention it to him too.  I have a growing list of things to talk to him about.

  • Wheezy Me

    Hi Lynn!

    Sorry to hear you'ra facing something again.

    Did you check your vitamin D levels? 400 units/day is quite low… people on constant steroids (which is not your case, but still) often get around 1000 units/day. Maybe you need some more?

    Also, ask to check your kidney and thyroid function if they didn't.

    Weight-bearing exercise is recommended to help slow down the decline, if you can (things such as walking, band exercises etc).

    And I second Cynthia's advice to ask your PCP to consult. As you wrote, most endos will not start osteoporosis meds before -2.5, but they may ask to follow up in shorter intervals.

  • Pljohns

    Thanks Wheezyme-I have had kidney and thyroid checked and all are well.  I do weight bearing exercise-walking 4-5 days a week (when I'm not flaring).  Correction on the Vit D-it is part of my calcium so I had to look-I get 1600 IU with that and I add 400 IU more so total is 2000 IU of Vit D.  

    I did make an appointment with my PCP-need to get established with him anyway-so I'm going to ask about the DEXA/FRAX score (which is AWFUL-39% chance of major fracture and 4.5% chance of hip fracture in the next 10 years.  Both of those numbers fall in the range of "start treatment" so we'll see what he says.  I have some other labs that need to be checked too so I can get it all done at once and be done with it.  At least I'll be established with my PCP finally (I saw another doc in that practice and just didn't get along with her so I changed to the one DH uses and haven't had a reason to go see him since I changed).  At least I don't have to wait long to see him and booking on line was easy.

  • Melissa G

    Oh my Lynn! I do not like when we have to wait for appts then the dr rushes in and out! Very, very frustrating. I hope your new PCP is helpful. Is your appt with him soon?

  • Kathy P

    Hugs Lynne – if I recall, we were having our DEXA around the same time. Mine also came back worse than what we'd hoped. Oddly, my spine number is stable, but my hip number tanked more than predicted for age and other factors. I'm being followed by an endocrinologist.

    She also ran my Vit D at the same time and since that was in normal range, I'm to continue to do what I'm doing. But she recommended upping my calcium since I don't always get as much as she wanted.

    And of course, adding weight-bearing exercise even if it's just walking.

    Since my weighted score on my hip was declining so much, the prediction for over the next 2 years was into osteoporosis territory. So, she recommended starting one of the meds. She went over the options and risks with me and we settled on one.

    It's so frustrating that we need to take meds (prednisone, PPI) that decrease bone density and then have to take more meds to try to arrest the bone density loss. 

    I hope your PCP will be helpful with this. My dh and I both are followed by an endo – he was punted from PCP and I was punted from allergist/asthma doc.

  • Pljohns

    thanks for the info Kathy-I'm in the same boat I think.  My PCP appointment in next Friday-bossman is out of the office so it will be a good day to be done for a little while.  My Mom has broken her hip and pelvis due to osteoporosis and I don't want to get in the same shape she is in so i want to jump on this.  I've researched the meds that are approved for osteopenia so at least I have an idea about what is available.

  • Pljohns

    Well, I did some research on the meds that are available to treat osteopenia and of the first 4, 3 of them say "use with caution if you have asthma-may cause acute flare" but the 4th one-heck no-the first thing listed on it is "may cause stroke, DVT or Pulm. embolism"  Nope-not trying that-my Mom has already had a stroke and I don't want to temp that fate.  I really just want to throw in the towel and keep taking safe calcium and Vit D.  Guess I'll see what the PCP has to say-at least the insurance covers all of them so I won't have to fight that battle-now I just get to stew over it until next Friday when I see the PCP.

  • StephM

    There are a bunch of dietary strategies beyond Ca/D that can help– can you get in with a good dietitian in your area more easily?

    And I'd consider moving to PT or a skilled trainer to increase weight training to closer to your max.

  • K8sMom2002

    Hugs, Lynn! I hear you on meds that don't get along with our health histories!

    I'm hoping that you get some advice and guidance from your PCP. I love StephM's suggestion about involving a dietitian and PT into the mix. 

    When you talk to your PCP, could you remind them that it's hard to get an endo to take a look and ask if they will reach out in the short term to see what advice they would give for a patient with your health history?

    I have had a similar situation when it comes to adding in meds. Add to that, I'm at least two hours from any specialists like endo or rheumatology, so it's hard for me to get in. I've had docs reach out and ask for a curbside consult so we could get a plan sooner rather than later.

    An endo could help your PCP figure out what the true risk would be for a patient with your health issues. It may be a very rare risk compared to the definite risk of untreated osteoporosis. Then again, it could be that they are cautious and agree that the usual first-line therapies won't work in your case.

  • Shea

    Lynn, I am worried about osteoporosis too. But breathing comes first and I already use the prednisone as sparingly as I can manage on and I too do not like new meds with side effects. And I know you do too.

    My mom works at a health food store in the vitamin department now. She recommended to me to take cal-mag-vit d blend that is at a ratio that supports calcium utilization… And she says take it with food helps it absorb too. I also take a vitamin k supplement that helps with "calcium optimization and transportation"– if course you should check with your doctors (like the vit k shoukdnt be taken with blood thinners). 

  • Pljohns

    Since I manage a PT practice, getting them involved wouldn't be an issues at all-and one of the benefits is they take care of employees/family for insurance only-I wouldn't have to pay anything at all.    I don't know about dietary but i did a good bit of research yesterday and have added a lot of fresh fruits and vegi's (specific ones) that are good sources of calcuim.  I walk at least a mile every day and most days at least 2 miles so I'm getting weight bearing exercise.

    The problem with endo's in town is if they can't cut on you, they won't see you-period.  It beats anything I've ever seen-you would think they would at least manage diabetics but nope-they make the PCP's do it.  I understand that there is a shortage of them in town (along with just about every other specialty except ortho) but it is their specialty!  There literally is no hope of getting in with an endo.  

    The PCP's office called me and decided to tell me I couldn't see the doctor because there was a "protocol" in their office for changing physicians.  I interrupted her and told her I filled out the form, submitted it and the office manager had called me and told me the change was approved.  i can't help it if they can't find the form-tough.  She finally agreed to let me see the new PCP-that office is just awful but the doctors are good.  At least I have an appointment on July 5th to see him and we'll just go from there.

  • Kathy P

    That sounds really frustrating! So glad you were able push through and get an appointment set up. Hopefully it will be productive!

  • Pljohns

    Thanks Kathy- I hope so too-I got my updated FRAX score and it says "your 10 year risk of any fracture is greater than 45%"  guess that means I better be careful hu?

  • Kathy P

    Ugh….I should go look at mine again, but maybe I'm better of not knowing!

    Thanks for pointing out that all the meds have a risk of making asthma worse. That was not mentioned to me as a risk and it's really buried in all the literature! You have me reassessing and possibly going back to Endo for further discussion. 

  • Pljohns

    At least in all of my research, I did confirm that my Mothers doctor is an IDIOT-she had a massive stroke 21 years ago, two years later, broke her hip and almost a year to the date after that, broke her pelvis-all from osteoporosis that no one bothered to check.  Well, the osteoporosis med she is on-the FIRST warning-in big bold letters-is "DO NOT TAKE IF YOU HAVE A HISTORY OF STROKE"  the first possible side effect is stroke, followed by pulmonary embolism and DVT.  Hello????  WHY would you EVER give that to someone who has already had a massive stroke?  It also says if you take thyroid med, this med may cause it to not work correctly (and she takes the med it named for thyroid) AND that it can cause your triglycerides to be elevated (her's are through the roof). This is not the first med for osteoporosis she has been on-the other one, she was on for 15 years and it clearly says -medicine may become ineffective after 3-5 years and should not be taken consecutively for periods of time longer than 5 years.  

    Her doctor and I have been around and around about meds in the past-he is a total jerk that doesn't take care of Medicare patients very well.  Her thyroid was so elevated over a year ago that she felt awful and put on a lot of weight.  I got on the portal and saw how elevated they were and ask WHY he didn't change her med dosage-her reply-oh he said everything was fine.  Once he changed her meds (after I yelled about it) her levels are within normal limits and she feels good again.I wish I could go to the doctor with her but I'm 10 hours away and there is just no way to get there.  I guess he and I are going to fight over this medicine now-she is already at risk for another stroke because of her history and a DVT because she is wheelchair bound and hardly ever gets up to walk.  I swear-I have to keep my doctors and medication straight and I guess now, I need to keep an eye on theirs too-

  • Shea

    In my experience.. Doctors have not checked for interactions or given me proper warnings. So many times I have had issues with their meds, youd think Id learn. Well, I am slowly. I really have to read the rx info carefully and look up meds now, I trust myself and my body and pay close attention. I get copies of my labs and tests. After so many disappointments in them, I have decided I myself am my doctor and they are my hired help. 

  • Pljohns

     It's really sad that we have to police the doctors-I know they can't know everything but the program they use to look up meds tells them contraindications and side effects-I know, I've used that software when I managed primary care.  Part of the time, they just choose not to look at it to save a few minutes with a patient.  The pharmacy software should catch it too but it doesn't.  

  • K8sMom2002

    Hugs, Lynn … glad you have a great option to go the PT route.

    I guess no one can be a better advocate for ourselves than ourselves — so glad you're a good researcher. Could you ask the pharmacist to review your medical history and your other drugs when you go to pick up your meds? Mine has helped me a couple of times. 

    I will warn you — some doctors don't appreciate pharmacists second-guessing them, but I figure a pharmacist has a lot of expert training in toxicology and drug interactions.

    And definitely take care and be safe!

    Still …not to be a Pollyanna, but a person with your FRAX score still has a 55% chance that NO fracture will occur in the next 10 years. It's not the best news, but it sounds like forewarned is forearmed.

    Way to go on all the things you're doing to prevent that bone loss and for you trying to figure out ways to help reduce those odds even more!

  • Kathy P

    That's really scary about your mom Lynn! My MIL was one 2 different meds (at the same time) for more than the 5 year limit. She wound up with a shattered femur. So, I'm well aware of that risk! And my endo did mention that on the treatment timeline, so I was glad about that.

    I pinged her today to ask about the asthma link and she said there wasn't one. Now I'm going to need to do more digging…can you share some of what you found?

  • Pljohns

    Click on the alphabet at the top of the screen that corresponds to the med you want to look up.  For Boniva, i hit “B” and then selected boniva from the drug list.  Hit the tab for “side effects” and scroll almost all the way to the bottom until you get to the section that says “for healthcare professional”.  Keep scrolling until you get to Respiratory and look at the COMMON side effects.  Asthma exacerbation is listed there.  I did the same thing on the rest of the meds for osteopopenia. Most of them say the incidence is 1-10%.  some of them list upper reps infection with the incidence as high at 34%.  I totally get that it’s not that high but when my asthma goes south, it goes south really quickly an really bad so I’m not sure if i want to take that chance.  Definitely something to talk to the doc about.

  • Amber Says Shine

    I haven't even read all the messages in this thread, but it leads me to feel so frustrated with our whole medical system. All these barriers to quality, integrated care are making things inefficient and keeping us from accessing what we need for our best health.  Anyhow, I'm sending you good vibes, Lynn.  I'm grateful for all the ideas here. My paternal grandmother had significant osteoporosis and I've been taking a calcium supplement for years because of that history combined with my twice daily Advair. I haven't had my bone density checked yet, so it's good to hear from others who've been through that process.  Take good care, everyone!