Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Volunteer Mentor, Leonard Holloway
hiMartin: My rheumatologist suggested I get my calcium in foods, but now am wondering if I should take calcium supplements too. If I may ask how
much Vit. D is your wife taking? I take 2000 Vit. D wondering if I should take more. Thank you for your report.
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Hi @caress. Calcium in foods is a good choice, but in my wife’s case, lab tests of her parathyroid and of calcium in her blood defined her need for a calcium supplement of 600mg daily. Annual lab tests confirm she should continue at that level. As to Vitamin D, she gets 400IU with her calcium supplement and 1000IU more in a D3 pill. Maximum recommended is 4000IU daily. More on Vitamin D in this comprehensive paper from NIH: https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/. Ask your doctor about any change, now that summer is upon us and the sun will be manufacturing Vitamin D in your skin. What’s with your walking? Hope that’s not too problematic.
Liked by Teresa, Volunteer Mentor, Gail, Alumna Mentor
@gailfaith You sound like a delightful 81 year old! I’m sure your doctor and his staff must enjoy working with you. You mentioned having a rare form of Muscular Dystrophy. If you are comfortable sharing more about that diagnosis, it might be helpful to our other members. For example, is there a name for the MD diagnosis. What type of symptoms do you have and how long did you have them before you were diagnosed? Teresa
Hi Teresa,,,Yes. Before my first TKR he was alternating between cortisone and Synvisc injections into my L knee to hold off surgery as long as possible. My appts with him were always on a Friday. One Friday, he injected cortisone and I was fine for the weekend as usual, but woke up Monday morning weak. I did nothing all week, except to sit in the sun to read. By Friday I was OK again. I mentioned it to him at my next appt and he said, “we’ll never give you a big shot of cortisone”. Two years later I had the R knee replaced and two months after that very successful surgery, ( I got 132 degrees of bend in less than 2-3 weeks without pain.) I went for a post surgical check and he noticed fluid in the knee and removed it However he left that job for his resident who couldn ‘t do the aspiration and I said to get the Dr in here. He came in and preformed the aspiration, but apparently switched a prepared syringe and injected cortisone. Not being able to see what was going on, I just left and again was fine for the weekend but woke up Mon morning very weak. It was then I realized he had injected cortisone. I though OK by Friday I will be fine again but this time the damage was permanent. All my doctors said I could get worse, but never better, but no one put a name to my weakness. After I moved to retirement community in 2010, and all the doctors there said the same thing, I decided to fly to Mayo with my service dog from PA. After many tests and a biopsy, they said I had Myotonic Dystrophy type 2. I started weekly PT when I got home and will be in PT as long as I can get to my therapist. Even though I now no longer have a car a friend-RN has committed herself to getting me to my weekly appts. I had hoped to get a therapist who would “stand on me” to get me to work hard in PT, but I got a therapist and we get along so good, I work hard in PT just to see his smile! We have a lot in common so we understand each other pretty well. One of things I do is a lot of walking and have measured about 95 different route on the campus. So now each week, he writes what how far he wants me to walk each day. He will put down something like 0.5 miles and I will pick something from 0.50 to 0.5999. One day I wrote on a piece of paper maybe 10 different distances within the requested distance and I asked him which one did he think I would pick and without looking at the paper he said “I KNOW you…..you’d pick 0.59999999! ” We have a ball together.
Liked by Gail, Alumna Mentor
Here’s more about @gailfaith‘s story:
– Myotonic Dystrophy type 2 https://connect.mayoclinic.org/discussion/myotonic-dystrophy-type-2/
– Muscular Dystrophy & Diverticulitis https://connect.mayoclinic.org/discussion/muscular-dystrophy-diverticulitis/
She is fascinating, tenacious and I think perhaps a wee bit of a humorous imp. 🙂
Liked by Teresa, Volunteer Mentor
Hello, I’m new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don’t know what “family” it’s in. Having horrible pain when lying down.
Welcome to Connect, @texasmimi. Thanks for sharing your osteoporosis situation and treatment.
Can you explain a bit more about how lack of exposure to the sun precludes you from taking vitamin D and calcium?
thank you predictable for the information. I will check with my doctor on the thyroid and if I can take more calcium
supplements. Thank you for the Vit.D website. I will check it out. Yes, my walking is a problem, I feel like my life is over
because I can’t walk that long, maybe ten minutes and I have to sit down somewhere, feel like I can’t plan any trips. If I speak to doctor
and ask him about the added calcium supplement and maybe more Vit. D. will help. I will need to find out. Thank you for your reply. I appreciate it.
Has anyone received their 1st BMD scan with a low t-score, like -3.1 in the spine, and been prescribed Forteo? I’m 50 and a little freaked out as I thought I doing a baseline BMD scan. I have no underlying conditions that can explain the extremely low score. Family history of estrogen-receptive cancer puts HRT out of the question. I would like to wait a year, increase calcium/vit D/exercise, and get another scan. Thoughts?
I have high urine calcium levels, so my endocrinologist also recommended I not take calcium supplements, but do take Vitamin D 1000 IU daily and hydrochorothyazide to prevent kidney stones from forming. I also get Prolia shots semiannually and have actually seen a significant increase in bone mass. Actonel did nothing for me and Forteo did not fit my life style. Hope that helps!
Hi Scottsdalenana: Is Hydrochorothyazide a water pill? the reason I ask is I take Dyazide which is a water pill. Any side effects from
Prolia? Does it bother your stomach at all? I have so many questions because of my stomach problems. Thanks again
That Vit. D. should read 2000mg instead of 200
@caress Regarding your question about Hydrochorothyazide. Here is a link that will provide you with some information about it, https://www.drugs.com/hydrochlorothiazide.html. Teresa
thank you Teresa for the valuable information on hydrochorothyazide.
I found that I cannot take hydroclorothyazide any more. I took it when I was younger, but tried it 5 yrs ago with Valsartin for blood pressure and it made me very sick. I don’t know why, perhaps age related. So, if you take it be sure to let your doctor know about all side effects you may have. Good luck.
thank you gailb for letting me know, I take a water pill diazide so when I saw hydroclorothyazide I was curious to see what it was
I have Osteoporosis with Kyphosis. I have had a vertebral plasty for VCF’s. My DexaScan not very good. My Rheumatologist has suggested Forteo. Most of her patients turned down the Forteo because you have to inject yourself each day. I don’t want to be on any medication however, I also don’t want to end up in a wheelchair. I am probably going to go ahead with the Forteo. I know it is the only medication that is supposed to actually Build bone. I tried the pills in the past but developed swelling of my feet and ankles. I need to see a dentist before I start the medication. I will let post how things are going with it once I start.
Liked by Colleen Young, Connect Director
I just want to offer my sympathy. You have had to make a difficult decision. So far my Dex scores are OK,
but there are never any guarantees.
If I may ask, how old are you?
I was on Forteo for the 2 recommended years (after having been on Fosamax and the numbers began to drop). I had excellent results with Forteo and would be on it today if it were allowed. After the 2 years I was back on Fosamax to keep what Forteo had built up and because of starting osteoporosis meds young (35)…my dr gave me a drug holiday of 3 years until I fractured my pelvis in 5 areas. I am now on Prolia. I just began my 3rd year of Prolia and will have a DEXA scan in Dec to see the results. My dr has mentioned a possible return to Forteo. I didn’t realize a person could go back on after a period of time. I am fine with it. After extreme osteoporosis I am now osteopenia at 61. (fractures in order: toe, T9, clavicle, rib, pelvis)
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