OSTEOPOROSIS AND DRUG CHANGES

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jaybee00

Senior Member
Messages
606
Hi,

Has anyone here on taken biphosphonate drugs and felt an improvement in their MECFS symptoms?

“There are several bisphosphonates to choose from:

pills, such as alendronate (Fosamax), ibandronate (Boniva), or risedronate (Actonel, Atelvia), taken daily, weekly, or monthly
injections of ibandronate (Boniva), given once every three months
intravenous infusion of zoledronic acid (Reclast), given once a year.”
 
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lenora

Senior Member
Messages
5,021
Hi Jaybee.....I was on the fosamax pill (once weekly) for approx. 25-30 yrs. My internist insisted on a break, which should have been done much earlier.

Anyway, during that period, I broke toes, ankles and the last, a fractured pelvis and several vertebrae....all while on the drug. I was bedridden for close to a year and still have a lot of pain.

I refused to go on IV prolia....what's the point (for me)? I could end up with a broken tibia (one of the side effects) and I decided that I simply needed a real vacation from all of the drugs.

To be honest, I don't know what to do. Confusion reigns.....my osteoporosis is very bad and has been since my early 40's. I just tired of pills, pills, pills....whether in vitamin form or drugs, but they are a part of my life, and will continue to be so. Yes, they're necessary or I wouldn't be taking them.

I would also like to hear the experiences of others. One of the reasons I didn't have prolia is that two friends had it, and both had bad side-effects. That's just chance though. Yours, Lenora
 
J

jaybee00

Senior Member
Messages
606
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lenora

Senior Member
Messages
5,021
Thanks, Tammy, I'll definitely check it out. If it's not on Amazon, where did you get it?

I assume it has all of the building blocks necessary for making bone, also.

Osteoporosis is painful, but I don't know if drugs are the answer. Still, you must try what you think you should.

In the meantime, I'll check out what Tammy uses. There is nothing to relieve the pain of broken bones, well, yes, you can use ibuprofen and a muscle relaxant....but you're in for pain and incapacitation. Yours, Lenora
 
perchance dreamer

perchance dreamer

Senior Member
Messages
1,719
I started MK-7 several months ago at the recommendation of my practitioner. She didn't say anything about when to take it, so that 1st day I took it in the late afternoon. That night I had very bad sleep.

After searching the next day to see if there's any correlation between MK-7 and sleep, I saw that some people do experience sleep problems with it. Thankfully, I've been able to continue MK-7 by taking it when I wake up.

My brand is Healthy Origins Vitamin K2 as MK-7.
 
anne_likes_red

anne_likes_red

Senior Member
Messages
1,103
lenora said:
Thanks, Tammy, I'll definitely check it out. If it's not on Amazon, where did you get it?

I assume it has all of the building blocks necessary for making bone, also.

Osteoporosis is painful, but I don't know if drugs are the answer. Still, you must try what you think you should.

In the meantime, I'll check out what Tammy uses. There is nothing to relieve the pain of broken bones, well, yes, you can use ibuprofen and a muscle relaxant....but you're in for pain and incapacitation. Yours, Lenora
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I have no reason to suspect I have osteoporosis however my hair mineral test indicated very low calcium and strontium. I decided to take Garden of Life's Bone Grow system for a few months before retesting. From the reviews it seems people doing DEXA scans seem to be getting good results with increasing bone density. Just mentioning this product in case you're still researching. x
 
Abha

Abha

Abha
Messages
267
Location
UK
lenora said:
I'm female and age 75. I'm presently recovering from 5 pelvic fractures and a vertebra that has just had it's second fracture.

My question: I have been on Fosamax since it's introduction since I've had osteoporosis from probably age 40. Since the recent fractures my Internist wants to change me from Fosamax to Prolia (six month infusion). To be honest, I've had two friends who were adversely by the 6 month infusions.

I'm quite interested in any experiences anyone (male or female) have had with the likes of Prolia. On the one hand it's easy....although I will have to go to a profusion center, but on the other I'm afraid of side-effects. I have a history of FM and I really don't want that not-so-little problem back again.

Feedback would be appreciated. Very much so. Thanks. Lenora
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Hi lenora,
Very sorry to read about your health problems including osteoporosis.I have had treatment for parathyroid disease(hyperparathyroidism)by Dr James Norman/team in Tampa, Florida.In my case I had the disease for about 12 years according to Dr Norman and earlier diagnosis would have helped me.My tumour was removed and then I was treated for the illness.There is excellent information re osteoporosis/drugs etc on Dr Norman's site...You may find that useful....
www.parathyroid.com https://www.parathyroid.com/osteoporosis.htm
Wishing you all the best...
 
Tammy

Tammy

Senior Member
Messages
2,236
Location
New Mexico
Lenora............yes I order the Orgono G5 Siliplant off of Amazon. ON the bottle it says maximum strength silica formula. Original formula by Dr. Loic Le Ribault. 33.85 fluid ounces. Initially I was taking it every day and now I take it approx 4-5 times weekly.
 
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lenora

Senior Member
Messages
5,021
Thanks @Abha & @Tammy.....I have to try something, but what? Yes, I'll read Dr. Norman's site also.

I go from a confused state to a confused state.....who knows who's right?....and if it's right for everyone. I'm trying to stay upright, at least that will help the osteo situation somewhat. Kind of hard when epilepsy hits and knocks one across the room. Something's bound to break.

I never expected old age to be easy, but I go from one ridiculous thing to the next. (Like never heard of.)

Oh, Abha, a pituitary tumor was my first sign of something being amiss during all of this. It was treated by a drug.....and went away on its own. Still, as I tell myself there could be something worse. Enjoy the autumn, both of you. We're all in need of a sigh of relief. Thanks for the kind responses. Yours, Lenora
 
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lenora

Senior Member
Messages
5,021
Hello.....@Abha, I read the info you sent. I have none of the symptoms of parathyroidism, apart from the osteoporosis itself. I reached menopause before age 40, was never on hormones and quite honestly, no one knew what to do with me, thus the Fosamax.

I have lost 3" in height and try to sit upright, etc. It's hard as I had scoliosis as a child and other degenerative illnesses. Casts and braces were part of my childhood years from at least age 5. No outward signs of damage, but they were heavy things to wear.

I think it's too late for estrogen anyway, but I'm going to ask. It seems the only way to go at this point. Osteoporosis should be taken fairly seriously, because it is serious.

Thanks for the information. I'm always glad when someone is helped......so Prolia is definitely out and any other drugs for bone formation at this point.

Now I just have to decide what to take and Tammy, do you feel that this has helped you? (Well, obviously yes or you wouldn't be taking it, would you?). Even my doctors get confused and can only deal with one problem at a time.....but really, they're all tied in together. It doesn't help to lose my doctors who have followed me for so many years.....this is another really big problem. To say nothing of the fact that they were great people who tried very hard. It's hard to begin again. Yours, Lenora
 
Tammy

Tammy

Senior Member
Messages
2,236
Location
New Mexico
lenora said:
Now I just have to decide what to take and Tammy, do you feel that this has helped you? (Well, obviously yes or you wouldn't be taking it, would you?). E
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All I can say is several years ago or more, I fractured a bone in my hand without even knowing how it happened so this was a red flag for me. Also I have disc degeneration. I have never taken any kind of bone density test but really don't feel the need to. The small fracture without known cause and disc degeneration is enough proof for me and family history. I eat a very alkaline diet because from my research I believe that too much acidity in the body plays a part in poor bone health. Anyhoooooooo, in a nutshell, I don't have any proof that my bone density has gotten any better but I have not had any fractures since I've been on the Silica. My teeth seem to be in much better shape also since on the Silica.
 
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lenora

Senior Member
Messages
5,021
Thanks, Tammy. I've ordered the "new" compound recommended by you, and we'll see where this leads. I guess it's just one more thing that we're all different in, our bodily needs and excesses.

Yes, the teeth are a good test.....but you know, I've always had good teeth. In most people it's the gums that give problems. Mind you, as we age we start the tooth game all over again. Old fillings need to be replaced, root canals, etc. I take going to the dentist and taking good care of my teeth very seriously. The water pik is one of the greatest inventions ever, at least as far as I'm concerned.

Also, I wanted to say the book, 'Brain on Fire' (autoimmune encephalitis) is not a big book (as I wrote???) is not well written...but then bear in mind that the author, Susan Cahallan, is a victim of the illness herself. It was kind of her to write anything at all. Her state was quite far along before they realized what was wrong. Yes, there is also a movie (not great), but bear in mind that she was very young when this occurred.

None of us know whether or not we'll be stricken again or when. There is a large psychiatric component to the illness which makes it particularly difficult. And so we live.......! Yours, Lenora
 
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