Hey Guys, just a quick question. Have any of you been diagnosed with severe osteoporosis? I just found out last week that I have it really bad - they said they almost never see numbers this bad in someone my age. (I'll be 47 in May.) My bones are worse than my mom's, and she's 75! I am at extremely high risk for fractures now, especially in my hips, spine and wrists. I need to go on either IV Boniva or Reclast (too advanced for any of the pills to be useful) - anyone know anything about either of them?
I am now having to use my cane pretty much whenever I am out of the house, cause my balance is extra bad lately, and I simply can't risk breaking a hip and having to rehab in a nursing home right now. I just wasn't ready to cross that threshold yet emotionally, you know? But I am trying to be a big girl about it, and just move on.
I have no idea what ate up my bones. I have only done oral steroids twice, never IV ones at all. I used to exercise pretty regularly, before winter came and I got sick all the time. I always took calcium supplements. Been on hormones for almost 4 years now, mostly so I WOULDN'T get osteoporosis, lol. And I looked it up, and osteoporosis doesn't seem to be on the laundry list of side effects/complications of Tysabri, so who knows. Maybe it's just from the crazy cocktail of other meds I take every day!
Just wondered if anyone else was in the same boat..... :)
Hi, Rita. I don't have osteoporosis, but I do have osteopenia (less than 2.5 standard deviations off). Have been treating this for many years, first with Boniva, then with Reclast. I'm way overdue for another Reclast infusion. For the last one, I didn't feel great for a day or so afterwards, but it wasn't all that bad either.
I really doubt that this has anything to do with MS meds. It's largely hereditary, but aside from that, who knows?
Yes, it's very important to combat it with something like Boniva or Reclast. Falling is a scary thing. Good luck with this.
I was diagnosed with severe osteoporosis (in my hips) as my 50th birthday present.
I tried Fosamax and Boniva, and neither worked for me. They both caused severe flu-like symptoms and severe bone pain (dilaudid barely touched it). After a year I gave up on them (just couldn't take it anymore).
Those were both oral medications, so I have no idea about the IV medications. I didn't think they worked any better that the oral (but I may be wrong).
Low vitamin D is common with MS. If your Vitamin D is low, you will have difficulty absorbing calcium, no matter how much extra you take.
I was taking 1500 mg of calcium, plus 1000 IU of Vitamin D, plus estradiol, and it made no difference in my DEXA scan.
Did you have any problems w/this prior to tysabri? I'm trying to find some post-marketing studies on this, but so much of the literature focuses on the PML (as I'm sure you already know) and it's like looking for a needle in a haystack. I'll dig a little longer just by chance it was identified as a contributor somewhere along the way.
In the meantime, sure hope the infusions help the problem.
Thanks for the input everybody! Interestingly, I just found this link on osteoporosis and MS: http://ms.about.com/od/livingwellwithms/a/osteoporosis_ms.htm. Doesn't really say anything we didn't already know, but kinda weird it popped up today .... :)
I'll ask my neuro, when I see him for the Tysabri next week, if there's a connection with that and the severity of the osteoporosis, but I don't think there is. (Thanks for digging into it, tho, Shell, and let me know if you find anything interesting!). I am not surprised to have bone density issues, (there was a recent issue of one of the MS magazines dealing with that specific issue), I was just shocked at the severity of it in my case, as were my GYN and my family doc. You know it's impressive, when you get the big eyes and the "WOW - we hardly ever see numbers like that!", lol. I know it can be hereditary, but my mom's bones are way better than mine, and she's got almost 30 years on me, lol.
As far as the oral vs IV osteo meds, I don't know much - I honestly haven't been on the computer much lately, as I've been given time limits by the PT people cause of my back injury, so I haven't been able to do my usual research, lol. All I know is they said I was WAY past the point of the oral meds helping, so maybe the IV ones are stronger amounts or something? I'm going to see if my neuro has any preference of one over the other. I know he's not thrilled with the med I'm on for my gastroparesis, so I have to discuss THAT with the GI doc tomorrow. It's always something with me, it seems, lol.
This is the first DEXA scan I've ever had, so I have no idea when the bones went bad ... Maybe it's just another weird "Rita" thing, lol. (All my docs tell me I am never normal ... :) I'm just hoping the balance problem starts to improve some soon, cause I'm just not keen on having to use the cane all the time. But at least it's there to help me, and if being a big girl and sucking it up and using it keeps me from breaking something, then it's all good in the end.
I had an MRI yesterday ... besides the balance worsening, I was also having some slurring of speech, difficulty saying some words, upper lip felt thick and heavy, and thinking was just even more work than normal. This had been going on and worsening for a week or so, so I finally called the neuro.
I haven't gotten the official news from him yet (probably won't till I see him next week), but the good news is there is no bleed from when I fell so hard on the ice, and no PML lesions. Looks like there's a new, small MS lesion that enhances a bit, so I don't know if that's what's causing this latest nonsense or what. (I went to one of the radiologists I used to work with and got the reading this morning ... the suspense was killing me, lol.) Having that history in medical imaging still comes in handy sometimes ... ;)
I'm not thrilled there's a new MS lesion, even if it's small, cause that means 2 new ones since May 2009 - but I honestly think, and I'll bet my neuro will too, that it would be worse if I wasn't on Tysabri. For me, the benefit still outweighs the risk - I worry WAY more about what the MS would be doing to me right now without anything to at least slow down the parade, you know?
So it wasn't great news, but it wasn't really bad news in the grand scheme of things with me. All in all, I still can't complain - God has me in the palm of His hand ... I can feel Him closer than at any other point ever in my life. And how could I complain about THAT? :)
Hope you all have a great rest of the week and weekend. My son is coming home from college tomorrow for a couple of days - WHOO HOO!! I haven't seen him since Christmas break, so this will be a hit and run visit, but nice all the same! I haven't gotten to clean the house like I wanted, but who really cares? The important thing is to see him and just savor that time ... Take care everybody ... :)
Crummola! Lady, When will it stop? What a nasty thing to find out. The Osteoporosis is not related to MS and the usual use of the IV steroids don't lead to it, but, if you already have it, the steroids certainly don't help it.
Elaine's husband, Craig (Monotreme) also has very severe osteoporosis. Maybe she has some info on it.
And, I agree that the few new lesions are likely far less that you would see if not for the Tysabri.
If your balance is poor and you need a cane, please consider a walker. That will be a far greater assist to keep from falling.
My brilliant MS neurologist (who moved out of state, darn!) would have his patients get a bone density scan. His observations was that MS'ers had a higher incidence of osteoporosis than most. He did not know if this was caused by lack of activity or other causes (vitamin D & calcium?)
There is an alternative if you cannot tolerate the usual osteoporosis meds.
It is called intranasal salmon calcitonin.
This is the medication insert:
My mom is using this. It is sprayed in the nose and my mom reports it's not bad at all.
Thanks again for all the help, you guys, and just for commiserating with me when I am whining, lol.
I am just going to PM you, and we'll catch up and make plans for lunch, OK?
Thank you for your thoughts - I always appreciate how you take the time to share all your knowlege here. You are always so kind and thoughtful and caring ... :) As far as the walker, I'm still OK with the cane so far, thank God. And I wasn't ready emotionally to take THAT step, lol. I'm certainly not ready to convert to a walker yet ... I'm sure that day is coming, but you know I'm stubborn and will wait till there's just no other way, lol. Meanwhile, I just may ask for a couple more cool canes for my birthday ... :)
And I have learned to NEVER ask "When will it stop?" or "How much worse can it get?", lol. Cause that's when I usually find something else unpleasant comes around ... :) Right now, I'm still trying to figure out what God's plan is for me for this next phase in my life, since my option to work was taken away. I know it happens for a reason, and I feel in my heart that I am supposed to do something to help others - that particular window just hasn't opened up yet, but I just feel the opportunity is close at hand now... :) Meanwhile, I'm starting to try to sketch and draw again when my hands aren't having a mutiny, so that has been nice - time always just flies by when I'm drawing....
Thank you for your great input also! I think I will ask my neuro when I see him next week about the vitamin D issue. I take supplements, but maybe I need more - who knows? And thanks for the link about the intranasal salmon calcitonin - I have never even HEARD of that one before!! I'll ask the neuro about that, too ... :)
You guys rock, and I just love this "family" - thank you for all you do, and for all the times you have been there for me, in one way or another ... :)
Hi there, I have severe osteoporosis now...I have had it bad for a long time but while I was sick before I got my diagnosis for MS, it went from bad to severe. I had not been exercising and I had not been active for that whole year.
My Dr sent me in to get the Reclast IV...I didnt have any trouble with it, felt fine afterwards. I go back in August for my 2nd, and will see what they say.
The osteo is in my spine and hips also...but I don't really worry about it. Thank God I haven't broke something with being dizzy and off balance too.
I don't believe it from the MS, but thats one thing I have not researched. I was always very active before the MS.
Well, to add a new wrinkle to the osteoporosis thing ...
Saw the GI guy a couple of days ago, and it bought me a ticket to a colonoscopy (ask me how excited I am, lol!), cause he says I could have something such as Crohn's Disease in my colon that is actually causing the gastroparesis that is being difficult to treat. Never crossed my mind I could have something like that, too!
Before I left, I casually mentioned the recent diagnosis of severe osteoporosis, figuring it wouldn't mean much to him anyway. Well, he said that he now REALLY wanted me to have the colonoscopy, cause I could have some kind of malabsorption thing going on in my colon causing the osteoporosis at my age. Who would have thunk it?? :)
Gotta run - we have to do Easter dinner today, cause my son goes back to college tomorrow, and I need to get a plan together, lol. Hope you all have a great weekend and a wonderful Easter!
I was dx'd with osteoporosis at age 49. Severe in my right arm (dominant hand) and moderate in my hips and spine. Neurological symptoms began 3 years before that. Always been slim, but weight loss has been a major complaint. I've lost 2 inches off my previous height of 5' 9 1/2" and now weigh 105 lbs.
In had a very short menstrual history, starting menses at 16 and completely finished by 43.
Tried taking Actonel and Boniva. Trouble is they have to be taken on an empty stomach with nothing to drink for an hour. I tried to take them on Sunday mornings, but was so conditioned to my wake up coffee that I'd blow it. As for vitamins high in D and calcium, they left me so constipated. I now take Centrum Silver.
Disequilibrium is one of my major battles and I am in fear of falling. I use handrails all of the time and make sure not to walk in the dark.
Am going to a Tysabri dinner tonight, not exactly in line with Lulu's Holiday Inn, can't think of a catchy phrase to go with The Hilton........
will try and throw out the question about osteo and Ty.........nothing like going to the source!
Is there a family history of it? I have osteopenia and osteoporosis and have had bad side effects from the oral drugs. Want to consider the IV but have to make sure insurance covers it first and of course bounce it off of my neuro......
Will let you know if I find anything out, also going to ask about MS patients giving blood too, that's on my question list.......
Definitley let me know if you find out anything interesting at the Tysabri dinner. I have no family hx of osteoporosis - my mom is going to be 77 and she has better bones than I do. None of my docs could come up with any reason why I would have it this bad, this young.
They said it was too advanced for any of the oral meds to help. Was going to go the Boniva injection route, but the first one gave me a blood clot. None of them had ever seen that before, lol - and they didn't think it was from the Boniva, although I had never had a blood clot before.
I had the Reclast infusion last year, and am in the process of getting the one for this year set up. I had no problems with it, as I recall. Neuro had no reservations about it, either.
I was told I could not be a blood donor, so it will be interesting to see what they say at your dinner. I also had to remove my name from the bone marrow donor registry because of the MS.
Have a great time at the dinner, and let us know what kind of things you learn!
The concensus on the blood donation is still divided and no clear answer but I am leaning with the "camp" that says don't, as I think giving blood is a drain on our already compromised whacky system. The drug itself does not stay in the system long enough to be transmitted and they do filter blood if I remember nursing school right
The drug rep said that there is no bad interaction between the Reclast and Tysabri.
There were people there who said their lesions were actually repairing themselves and not showing up on new MRIs (who were on Tysabri) and the rep clarified the statistics on the JC virus much better than the literature had...........I'll PM anyone interested in the specifics......I brought home the new PI with the new statistics......I feel better now about being on Tysabri and JC+
The success rate of people on Tysabri and not getting new lesions is just way up there now..........
Dinner was good, good turnout, the staff tripped over themselves offering to carry my dinner plates (hard to juggle with cane) and neuro was well versed, easily conveyed his meanings to audience and wow did they all brag on my neuro~ (grin - me too) They answered all of my questions very completely and even mentioned the cooling jackets and free videos for exercises that are online.........I have to look those up tomorrow when I get back from urology appt........
Hope I got answers to everythin everyone asked me to!
I have(had) osteopenia. In my case it is caused by Multiple Myeloma, which causes both holes in your bones, and thinning of the bones.
I've been on IV bone meds (Pamidronate) since my diagnosis. It has been great at taking away my bone pain in my back and ribs. And as far as I know prevented new damage.
When I first started (IV once per month) i had fever and fly symptoms, but after a few treatments this stopped. Sometimes i fall asleep after the infusion, and go to bed early but no biggie. My health is stable, and I am in Remision now, an we have decided to stop the Pami for the time being, and restart if I relapse, or if my bone scan next month shows osteoporosis.
The biggest issue with these meds is you are at risk of dental problem called osteonecrosis of the jaw. It means the jaw bone dies and often starts when you have a dental treatment like an extraction. so you need to be on top of dental things, I go every three months for a cleaning.
I think you are also at greater risk from a certain type of broken hip.
I took the med for 2 years, which is the sort of benchmark for myeloma treatment.
My mom was on an oral osteo med for almost 10 years, but her doctor told her to stop as they can only be taken for 10 years, and then it is no longer doing anything.
I'm supposed to take calcium, but it makes me really constipated, so I take a cal/mag vit. D pill (when I remember)
You are as lucky as I am. My diagnosis was for my 56th. Do you ever have pain in your groin area? I'm starting to get worried it started about a month ago now the pain is worse and it's starting to wake me up at night. I've been started on reclast IV because boniva oral made me really sick for a couple of days..flu like symptoms. Thank goodness for you all, I was starting to feel pretty alone. Not sure if I'm more angry or scared at this point. After reading some of these posts I'm not alone and I will learn quickly to stop feeling bad for myself.
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