Well more bad news came to me.I am 53 and I have the bones of an 80 year old. I broke my shoulder last december and I am still recovering from that. Doctor want me to take Bonine. I have increased my vitamin D and will continue to workout as much as I can.
Doctor said if I break a hip, it could end me. Now I am very scared. I dont drink milk and really want to rebuild my bones. I never want to fall again. I dont need calcium just vitamin D
Is osteoporosis because of MS? And if anyone out there is fighting osteoporosis any advice would be great
Thank you
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jkdavid99
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I am so sorry, that is very frightening. I read that Bonine is for vertigo. I thought osteoporosis and MS were a bad combination! Add in vertigo…😳I am 68 and have osteoporosis. I have two spinal fractures now, previously I fractured my wrist after a fall, as well as some fingers after another fall. I cannot imagine a shoulder. I don’t know what role MS had in this as both my mother and grandmother had osteoporosis. My Mom drank a lot of milk, so I don’t feel low calcium intake was the issue. I also can’t drink milk, so I now drink almond milk and, of course, take vitamin D. Plus K2. And I am back on Fosamax. I stopped fast walking on a local path that has lots of roots and rocks to trip over after realizing a couple of my falls were from tripping on nothing and haven’t fallen in almost two years. I saw a physio trained in exercises for people with osteoporosis and revamped my exercise program. This plus being more conscious while working in my garden etc. have helped me deal with the anxiety. I have gained back some confidence as time passes and because I know I am doing all I can. Still, it is a big worry and I can relate to your fears. Best of luck!
I read your response and looked at my chart notes again. It is Boniva the doctor wants me to take. Not Bonine, oopsThank you so much for your reply. I definitely need to do things differently. I currently have 39 chickens so I might need to downsize.
The doctor said I am young for as bad as I am. Good news is I have time to fix it
Since I am going to Physical therapy for my shoulder I will ask them about an exercise program
Your post made me feel better but I definitely have anxiety. I just want to live in a bubble so i dont fall again.
Thank you, jkdavid99! I tried to live in a bubble after I found out about the spinal fractures, I know exactly what you mean. It was summer and I did a lot of squatting in my garden so as not to bend my spine forward. It was good in that I learned how to put on socks and shoes and other things without bending my spine. But it was a relief when I passed out of the bubble phase. I wanted to add one more thing I learned from taking part in a frailty research program for people with disabilities. Besides the importance of exercise as a whole and balance exercises specifically.....seniors need a lot more protein. A lot!! And protein is super important, not only for muscle growth, but for bone growth as well. You aren't a senior, but I thought this information couldn't hurt. 😊
Hi Greentime! Reading your post made me think about spinal fractures. I've had osteoporosis for over ten years and in the past year have had lots of pain in my mid-back right where it bends and flexes. I hadn't thought of the possibility of spinal fractures, but your description of not being able to bend forward sounds like my issue too. How were your spine fractures diagnosed? Was it by x-rays or MRI? My doctor did an MRI of my L-spine, but this is a bit higher like lower T-spine area. ☺️
Hi Helpmeup, Sorry, I can bend forward, but I need to be careful when doing a lot of it, like in the garden. It brings vertebrae together which can cause a compression fracture. Bending backwards is fine as it puts distance between the vertebrae. Most spinal fractures are pain free, I didn’t even know! I had an X-ray done on my cervical and thoracic spine. My fractures were lower than often seen, maybe. In the area you described. I hope this helps!
Thanks so much. With osteoporosis, we are always worried about something, as if worrying about our M.S. isn't enough!😜You must have been quite surprised to find out about your fractures! I always worry about falls since my walking is wobbly. Glad you are still able to do your gardening. Appreciate the info! 🤗
Have you had MS for long? Were you given steroids much if/when relapsing? There is a known connection about increased risk of osteoporosis with steroid use - it's one of the reasons why doctors who keep up with research are less likely to prescribe steroids for relapses now.
I not saying that this is what has happened to jkdavid99, but I am saying that for those people who want their neuros to dole out steroids to them whenever they have a mild relapse - think again - the cost may well not be worth the short term gain.
Pulsed high doses of steriods as used on occasion (sometimes too many occasions!) for MS relapses are also known to be linked to a nasty irreversible condition called avascular necrosis of the hip. Apparently the increased use of steroids in patients with COVID has caused a related increase in avascular necrosis.
This just adds to evidence on why it's not a good idea to demand steroids every time someone's MS flares up a little - save them for the times they are really needed.
Thank you for your response. I have had MS for 20 years. I have only had 2 doses of steroids for double vision. I do get a quick dose of steroid for a pre med before ocrevus every 6 months. This is interesting, thank you
Thank you for sharing this. Unfortunately, I learned too late about how badly high doses of steroids can cause damage. My Neurologist believes in treating relapses with five days of Solu-Medrol (1,000mg) followed by two full weeks of Pred taper. Over the years, I have been put through that five times. Last year, I finally told my doctor that I was no longer willing to subject myself to that amount of steroids, especially having osteoporosis. In the future, if I have a flare up, I may ask for a three day Solu-Medrol burst with no taper. Or maybe refuse altogether! Tough choices, indeed.
This really changes how I feel about steroids, too. I remember talking about this not too long ago. Your doctor was pretty liberal with them and my old doctor was reluctant to use them. (But he was like that for over fifteen years, so maybe he was psychic. 🔮)
I've had other doctors in between, though, so I've been pretty well-marinated in Solu-Medrol over the years.
Thanks for sharing your experience. I'm sorry you're dealing with osteoporosis now, but you're a good role model for being assertive. 😊
I guess I need to talk to my primary and see if we can do a scan and figure out what kind of shape my bones are in.
Your description of being "well-marinated" in Solu-Medrol is so perfect!!! Been there, done that, hated every minute of it. Have you had a Dexa scan yet? I know some physicians don't recommend bone density scans for people under 60-65, but with your history of Solu-Medrol, I would certainly ask your doctor. It's a quick, easy test and so important to get done. Especially if you're unsteady and a risk for falls. 🤗🦴
No, I haven't. I'm 58. My primary doctor is a wonderful guy, and if insurance will pay for it, I think he would order it. I have also taken a proton pump inhibitor (Prevacid) for heartburn for decades, which can also be a risk. Thankfully, I'm still steady; I just can't walk that far. But if there's anything I can do to help my bone strength, I'd like to have that option. 😊
The fact that corticosteroids lead to bone loss has been known for many, many years. It was well known when I started medical school 50 years ago!
Bone loss occurs soon after corticosteroid therapy is initiated and results from a complex mechanism involving osteoblastic suppression and increased bone resorption.
Thank you. That's too bad. I know there are always going to be a few of the types of patients who want antibiotics for viruses, but in hindsight, I would have liked to have had that conversation prior to getting steroid infusions.
Hi BettysMom. Your point is well taken. When I was given SoluMedrol and pred tapers for relapses, my Neurologist at the time (25 years ago), never mentioned any possible side effects or risks. I was told this was the "gold standard" to treat a flare up, so I never questioned it. Of course, as years went by, I did some research and found out about the risks. By that time, sadly, I was already diagnosed with osteoporosis in my early 50s. It made me angry that, as you point out, the risks were well known, but my doctor saw no need to mention it.
I had a bit of a brain blip and because I was thinking about osteoporosis forgot that steroids can also have negative effects on liver function and significantly raise blood sugar levels in some people. Another kind of side effect is lack of healing as they reduce the inflammation processes which actually heal things like wounds - so even small wounds like minor cuts, hangnails, and scratches won't heal.
They can also increase the risk of stomach ulcers, and if long term (even at lower doses) many doctors prescribe proton pump inhibitors to reduce the amount of stomach acid your body produces to reduce ulcer risk. Long term use of PPIs can have effects on absorption of essential vitamins and other nutrients (e.g. folate, B12, magnesium etc) and increase risks of other health conditions. (I was on an unavoidable medium dose of steroids for 3 months many years ago, and one of the hardest parts was actually coping with the rebound effects when I was finally able to stop taking the PPIs - it took a year for the heartburn etc to settle down .)
I tend to think of inappropriately used or over-used steroids as a full-on example of all the flow-on effects that can come from one single drug that patients and doctors sometimes seem to be lacking respect for in relation to prescribing it far too readily. I certainly don't need to be reminded that all drugs have side effects of one sort or another, but the outgoing ripples from the steroid pond can be many and quite significant.
And, to top it all off, it has been shown clinically that steroids used in relapses don't actually reduce any residual damage or disability from a relapse, they simply shorten the duration of a relapse. That is worthwhile if it is a relapse which has someone half-blind or unable to walk etc, but it certainly should make people think very seriously about gobbling steroids down their gullet for the flimsiest of reasons.
Yikes, I take a PPI, too, because I have heartburn and mild gastritis. I keep hearing about how important the gastrointestinal biome is in MS and other things, in addition to the other risks. I guess it's time for a conversation with my gastroenterologist. That rebound acid you described doesn't sound like fun, either.
Aww, I'm sorry to hear this. I've always been paranoid about osteoporosis, though my lifetime amount of steroid use is low. I would ask about magnesium and vitamin K2.
Yes it is scary. It sounds like you are doing what you can with vitamin D and weight bearing exercise and the Boniva. I was also diagnosed with osteoporosis in my early 50's (I'm 64 now). I blame the rounds of cortico-steroids I was given for my M.S. relapses. I also have balance issues, so for a while I was just petrified of falling. I started using a rollator, and it gives me more confidence having two handles to hold on to. Hang in there!
You need more than Vitamin D. You need Vitamin K2 and magnesium. Also, why do you think you don't need calcium? If it is because your serum calcium is normal, you are making a big mistake. The serum calcium remains normal in almost all cases unless there is parathyroid disease. This is because the body takes calcium out of bones to keep the serum calcium level normal. Calcium is so necessary to the functions of all the cells in the body that it must remain at consistent levels in the blood at all times.
I was just diagnosed severe osteoporosis (6yrs ago it was normal bone). I was still running then but had to stop running 5 yrs ago. I am still active— aerobics, weight lift etc. so surprised.
Please note, Boniva fine. Doc wanted me to take prolia. Discovered that can deplete B cells. Could be risk for those on B cell depleters. 🙁
First my friend, praying 🙏 for your healing and that’s an excellent question? Please keep us updated! I have heard that “exercise “ is very beneficial with Osteoporosis. Maybe helpful essential hormones are stimulated during exercise? I definitely feel a difference with my body if I don’t take my Vitamin D. I hope and pray more attention and research will be done for MS to better help us all. Blessings to you. NeeC
Sorry about your diagnosis. Many things contribute including steroids Need vit d3 k2 magnesium boron & a few other nutrients. ×& other calcium rich foods not necessarily milk. Read Lara pizzornos healthy bones healthy you or her first book still good. I think your Bones (if you google her both should come up). She is associated with a product that has the best Facebook & if you ask her questions the best fully documented answers. It is a journey but c an reversed. It is a battle that I am engaged but optimistic the body is such a wonderful gift.
Hi, sorry to hear that this is added to your MS. Same thing happened to me.I am 70 and was diagnosing with osteoporosis About 6 years ago and it has gotten significantly worse in last 2 years based on bone density tests. I take 2000 units of D 3 and calcium as well as Forteo, which is supposed to build the bones From the inside. I fall all the time have not broken anything. Thank God. I pray the same for you🙏🙏🙏
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