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Reaction to Actonel

NancyO
3 Recommendations

Just got diagnosed with osteoporosis. (mild) 2.5 in lumbar region. Doctor started me on Actonel 150mg monthly. I took the first dose two days ago and I feel awful. Achy all over, exhausted. A general feeling of deep pain all over my body. My reaction is that I do not want to continue this drug at all. Would like to explore more holistic ways to treat osteoporosis. I.e. exercise, weight training, diet and vitamins. Has anyone had success with just taking this approach and actually seeing bone density scores improve??

Explore topics in this discussion:

Exercise Cancer Surgery Boniva Forteo Falls Fractures Fever Fosamax Reclast Hyperparathyroidism Actonel Pain Heartburn Osteoporosis Stress Evista

35 replies

NancyO

Sandi,

Thanks for your response. It is now three days and I still feel awful. You are probably right that if my doctor started me with a smaller dose, my reaction might not have been so bad. I really feel like my body is filled with toxic chemicals. I still ache all over. I just keep drinking lots of water, hoping to flush some of this out. Do you know of any holistic approaches and success stories? Thanks, Nancy

CarolAck

I started Actonel 35 mg, once a week last week. A little achiness last week, but oh my goodness! This week I was in agony. Couldn't roll over in bed, couldn't sleep, couldn't walk without pain. I got to the doctors and sat there until I was seen. Needless to say I will not be taking it again. Might just have to go with the supplements; I am not willing to have that kind of a reaction again. I too, would love to hear about some holistic approaches! Thanks, Carol

NancyO

Carol,

What was your Doctor's reaction to you stating you would not continue with the drug? My Doctor suggested I switch to Evista. Then he asked me if I was planning to travel. I said, Why? He advised me that one of the side effects of Evista is the possibility of blood clots. I said to him. Forget it.
My approach now is a focused exercise program, PT, diet, vitamins, calcuim and D3, plus I stopped drinking caffiene and soda. It's been just two weeks since I took my first dose of Actonel 150mg. I am just now starting to feel like myself again. If anybody has any suggestions on the best type of multi vits or the best combination and type of Calcium, D3 and Magnesium, I would appreciate it. Also, in terms of exercise programs, does anybody have an opinion on the vibrating machines, i.e. power plate???
Thanks,
Nancy O

CarolAck

Funny answer to your question - what did my doctor say - well, my usual doctor was not in so I got another doctor from the practice. He said that the research doesn't support things like actonel, boniva, evista, etc. in terms of any significant improvement, and suggested that I exercise and take supplements! Not too sure what my regular doc is going to say when she and he talk about my little visit. I may be switching primary physicians to him!! Carol

NancyO

Carol,

Interesting. Is this second Doctor an MD, DO, Internal Medicine or some other specialty??
Wonder what research he is referring to. Being reluctant to take meds, myself, I am pleased to hear his advice. If you lived around me, I would ask you his name.
Best wishes,

Nancy O

ejoyce

Hi Nancy,

I took my first and last once a month Actonel on Sept 7th. Within 12 hours I had fever, chills, aches and pains. The pain, mostly bone pain, lasted 10 days. Forget exercising, I could barely walk to the bathroom in the morning. My doctor has referred me to a rhuemotologist, I see him in 2 months. in the meanwhile I studying up on alternatives and will make a better infomed treatment decision this time. I am interested in knowing what you learn too.

Eileen

LindaS

I took Actonel years ago. I don't recall the dosage. I had to discontinue after a while due to intense heartburn. Although you may not see an increase in bone density, these type of drugs decrease fractures or at least that is what I have been told.

OsteoDoc

Fosteum is the way to go. I keep posting this but my wife has been taking it and hasn't had any complications whatsoever. Check out fosteum.com. We can't wait to see her DEXA scan results in a few months.

sport

How about Juvent whole body vibration machine?

NancyO

OsteoDoc,

Are you a physician???

Nancy O

NancyO

Eileen,

I understand your response to Actonel. I felt the same way. All labor day weekend I spent in and out of bed with terrible bone aches and feeling exhausted.

I contacted a natural pharmacist, Ben Briggs, at the Lionville Pharmacy in Chester County, PA. He is well respected in this area. According to Ben, taking any biophosphonates is the WORST thing I can do.
It is very challenging to decide what to do.

Only, now, 3 weeks later, am I starting to feel better.
Right now, I am only taking vitamins. I immediately totally cut caffeine and soda out of my diet and I have been working out everyday. (All this is a big change for me, I have been a total caffeine addict. Minimum of 5 cups of coffee a day plus soda.) Exercise wise, up til now I have only been swimming, but now I am using weights, working with a physical therapist and doing exercises specifically to help back, hips and balance.

Best wishes,

Nancy O

ejoyce

Nancy,

Why did the (and what is a ) Natural Pharmacist say biophospahantes were the wrong thing to take?

Most available options are just different forms of biophosphanates and while I certainly want good bone health, I don't want to feel as tough I am 95 right now. I feel stuck between a rock and a hard place.

My husband had 4 IV Zometa (Reclast) treatments for cancer that had spread to his bones and he has aches and pains that we attributed the the cancer but now think may be a long term side effect of the Zometa. He also has one of the rare occurances of ONJ (ostoe necrosis of the jaw). Really not good.

So what's a girl to do besides Calcium, D3, magnesium (my new best friend after the Actonel caused foot and toe cramps - ouch!) and exercise?

I so love my coffee, is it the caffiene or the coffee that is detrimental? Hot tea is ok? I have always exercised in some fashion, I know strength and weight bearing exercise is the best any additional advice?

Thanks,
Eileen

NancyO

Eileen,

My understanding is that over the years a variety of research studies have been done showing that caffiene pulls calcium from bones. As hard as it is for me to give up coffee, it is so much easier than taking Actonel.

Regarding exercises, besides weight training, my pt has me working on a lot of exercises to improve balance. I guess this is lookin ahead to avoid falling.
All this exercise is good stuff, although it requires discipline. The only side effect is that I am getting in better shape all over and losing inches. Not a bad side effect !!!! :)

Good luck, Eileen.

Nancy O

NancyO

Eileen,

I am so sorry your husband is dealing with this difficult diagnosis of cancer. I will keep you and him and your family in my prayers.

Best wishes,
Nancy O

BoneLady

NancyO, CarolAck, and ejoyce, Have you considered strontium citrate? Supplementing with strontium is a means for supporting bone health and optimal bone density. It can be purchased from health food stores and on-line distributors.

I have been taking 680 mg strontium citrate daily for eight months. I also take a calcium/magnesium supplement, but not at the same time because calcium and strontium compete for absorption. I take a multivitamin with 1000 I.U. vitamin D. Be sure to take adequate calcium, magnesium, and vitamin D when supplementing with strontium.

If you are interested in more information, visit my blog at http://strontiumforbones.blogspot.com/

JenBBB

I have been taking Actonel for over 5 years, once a week. No side effects that I know of.
Last month, I started taking it once a month. Again, no side effects.
Jennie

NancyO

Jennie,

That is great. How has your dexa scan changed over the past 5 years? Are you taking anything else or doing a regular exercise program?

Best wishes,
Nancy O

sdivas

Nancy O, I'm not sure if I missed any of your posts mentioning Vitamin D. I think it's important to have Vitamin D levels checked. It seems like you have taken a pro-active stand with your osteoporosis. The balance exercises are definitely to help prevent falls. Also I think it's great that you are working on specific exercises for the hips and spine. I know working on specific exercises has made a difference with my dexa scores. I feel that osteoporosis turned me in the direction of better health as all I would drink was cola. My nutrition wasn't much better and aside from walking in the mall, I didn't have an exercise program. Of course, I would much prefer not having bone loss, but now I feel I am doing all I can for overall good health. I would suggest that now you try to set aside concern about bone loss and commit to your osteoporosis program until you take a repeat dexa. Personally, when I have a repeat dexa, I take a few days to go over my scores, decide if there are any places I can make some changes (even small changes), I revisit all of my decisions and then I let it go until the next dexa. My way may not work for everyone, but it sure makes it easier .... and there's not sense for me to worry in between dexa's as long a I remain fracture free. Sandi

NancyO

Sandi,

Thanks for your response. No, I have not had any test to check vitamin D levels. Is that a specific blood test that I should request?? Also I was advised by several that we need D3, not just any D Vitamins.

Any thoughts.....
Thanks again,
Nancy O

OsteoDoc

No. I have done a lot of research and have read many studies after my wife was diagnosed. We wanted to get the best treatment for her.

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