Hello everyone.

Does anyone have a diagnosis for bone/joint/muscle pain and/or limitation of motion which occurred after taking any of the bisphosphonates? If so, please share that information with me.

My doctor has not been able to tell me how/why I have developed this problem after taking one 150mg. tablet of Boniva. He can't tell me what disease/illness/disorder is causing my condition. My problem developed overnight with no previous injuries/falls/symptoms, etc. Therefore, I do believe the Boniva caused this problem, but I can't prove it, and although I can find many people who have experienced these side effects, I haven't been able to find one person who has received a diagnosis. Please help.

For the latest information on Boniva labeling, go to:
http://www.fda.gov/medwatch/SAFETY/2005/Mar_PI/Boniva_PI.pdf

Momkat

Hello again, for more information about Boniva on this website, go to:
http://www.power-surge.com/php/forums/inde...?showtopic=5979 and
http://www.power-surge.com/php/forums/inde...=ST&f=34&t=8341

Momkat

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Hello momkat,

This is my first posting in years but I felt compelled to tell what has happened to me. I had been on Fosamax, 35 mg weekly for 3 months when I started to have more leg discomfort. I thought this was just more arthritis.By the fourth month I was having greater pain in my legs, especially the right one in the hip area but radiating in all directions. By the fifth month (January 06) I could hardly bear to prepare a meal or do much of anything around the house. I would go back to bed to ease the discomfort as that seemed to help. I live alone so anything getting done was up to me. The pain began to be accompanied by nerve spasms from top to bottom of my right leg. A local physician did an x-ray, an orthopedist looked at that and did an exam on me and prescribed muscle relaxers. Finally, I thought of the Fosamax as being the culprit and consulted the physician who prescribed it. She was doubtful that it was at fault.
I could not bring myself to swallow the dose that was due after I saw her. That was a week ago. I can hardly believe the difference in how I feel. Right now it's about a 70% improvement in symptoms. I'm due an MRI in 3 days to check for pinched nerves, etc. I will confess delaying taking the drug but I definitely would prefer another method for preventing bone loss.
Check your information sheet with your medication. Mine mentioned that some patients experienced muscle pain that returned when they tried to take the drug again. I absolutely do not want to continue with a bisphosphonate after 3 months of frightening misery

Cerise

Here's another vote for discontinuing Fosamax and its ilk if taking it causes severe pain in muscles, joints, etc. I experienced tremendous pain in my neck, left shoulder, left upper and lower arm and wrist. I assumed causes that were mechanical - that my computer setup wasn't ergonomically correct, that my shoulder bag was too heavy, that I was sleeping in the wrong position, etc. So I changed my computer set up, reduced the content of my shoulder bag and bought bed pillows to change my sleep position. No significant improvement. Went to my primary care physician who recommended exercises and heat. They helped, but for a few brief hours. No over the counter pain medication could make a dent in this pain. I was convinced I had advanced arthritis. Then I read a post on Power Surge about other women taking the medication suffering the same kinds of pain. I took a deep breath and stopped the Fosamax. No improvement for a few months. Then a lessening of the pain began. I haven't taken that med for a year and have no regrets. I know the long term risks of not taking it, but no one seems to know the long term risks (besides excruciating pain) of taking it.
Cesca

I read today on the internet that taking Lysine can help osteoporosis because it fixes calcium. Anyone tried it?
Antique

Been on Fosamax now for about 6 weeks....Feel fine on it, no side effects yet.
I am hearing so many negative things about this drug... I asked my doctor about it and she said
i would be fine on it. I have osteopenia , i don't want it to turn into somthing worse. So what are we supposed to do. I already take calcium and do weight bearing exercises. I do everything right and i still need this med for bone loss. I can't believe it.........Pudge

From all that I have read from important doctors in this field, drugs are not needed and should not be taken for osteopenia. Do some research and see what you come up with, but osteopenia need not ever become osteoporosis. Dor

Pudge, I agree totally with Dor! You may be feeling fine now, but there is a great danger that you will develop some really bad side effects. I would research the osteopenia for you, but I am being head nurse for my husband who is recovering at home from his second heart attack. Please check into it thoroughly. Unfortunately, medical doctors do not seem to have the time or inclination to research all of the drugs they prescribe! Momkat

Momkat, I was so sorry to hear about your husband's second heart attack. I hope he is doing good and getting better every day. Take care of yourself too. It is not easy being head nurse and caring for a loved one. I will do some reasearch on osteopenia for Pudge - you just take care of your husband and yourself.
Dor

Pudge, one of the best articles I have read is on Dr. Susan Love's site - susanlovemd.com. She talks about osteopenia and osteoporosis and has quotes from Dr. Ettinger, a leading bone specialist. Just type in osteoporosis when you get to her site. There is also a great book by Jillian Sanson called "The Myth of Osteoporosis". You can find it on Amazon. It is a bit slanted to her way of thinking, but there are also some great facts in there as well. Also, do some looking in your search engine - just type in "osteopenia". Just keep in mind that drugs are being given out for osteopenia now a great deal and one must weight the pros and cons of taking them. As I said before, most top bone specialist do not recommend them for osteopenia. Hope this helps. Dor

Thank you Dor, I really do appreciate your concern and offer to help Pudge. Hubby is indeed getting a little bit better each day. You made my day! Momkat

I don't have the detail ,but , for what it's worth, my mother was perscribed Fosamax and had a lot of leg pain. She is now off of it and feels fine. I believe there is positivley a link between the two.

Hello Fishlady, I agree, there is definitely a link. This is direct from the FOSAMAX website:

"If you develop severe bone, joint, and/or muscle pain at any time, contact your doctor." See http://www.fosamax.com/alendronate_sodium/...ide_effects.jsp

Also, on that website:

The most common side effect is abdominal (stomach area) pain. Less common side effects are nausea,
vomiting, a full or bloated feeling in the stomach, constipation, diarrhea, black or bloody stools (bowel
movements), gas, headache, a changed sense of taste, and bone, muscle, and/or joint pain.
Severe bone, joint, and/or muscle pain has been reported in patients taking, by mouth, bisphosphonates
drugs that are used to treat osteoporosis (thin bones). However, such reports have been rare. This group
of drugs includes FOSAMAX. Most of the patients were postmenopausal women (women who had
stopped having periods). Patients developed pain within one day to several months after starting the
drug. Most patients experienced relief after stopping the drug. Patients who develop severe bone, joint,
and/or muscle pain after starting FOSAMAX should contact their physician.

[quote name='Cerise' date='Feb 10 2006, 06:09 PM' post='114704']
[FONT=Arial][SIZE=1][COLOR=blue]
Hello momkat,

This is my first posting in years but I felt compelled to tell what has happened to me. I had been on Fosamax, 35 mg weekly for 3 months when I started to have more leg discomfort. I thought this was just more arthritis.By the fourth month I was having greater pain in my legs, especially the right one in the hip area but radiating in all directions. By the fifth month (January 06) I could hardly bear to prepare a meal or do much of anything around the house. I would go back to bed to ease the discomfort as that seemed to help. I live alone so anything getting done was up to me. The pain began to be accompanied by nerve spasms from top to bottom of my right leg. A local physician did an x-ray, an orthopedist looked at that and did an exam on me and prescribed muscle relaxers. Finally, I thought of the Fosamax as being the culprit and consulted the physician who prescribed it. She was doubtful that it was at fault.
I could not bring myself to swallow the dose that was due after I saw her. That was a week ago. I can hardly believe the difference in how I feel. Right now it's about a 70% improvement in symptoms. I'm due an MRI in 3 days to check for pinched nerves, etc. I will confess delaying taking the drug but I definitely would prefer another method for preventing bone loss.
Check your information sheet with your medication. Mine mentioned that some patients experienced muscle pain that returned when they tried to take the drug again. I absolutely do not want to continue with a bisphosphonate after 3 months of frightening misery


Hi Cerise,

I thought I had answered but I guess I didn't. I agree, please do not take the bisphosphonates; they are poison as far as I am concerned. Medical doctors do not seem to think these symptoms can be caused by the bisphonates, but Fosamax's own website admits this:

"The most common side effect is abdominal (stomach area) pain. Less common side effects are nausea,
vomiting, a full or bloated feeling in the stomach, constipation, diarrhea, black or bloody stools (bowel
movements), gas, headache, a changed sense of taste, and bone, muscle, and/or joint pain.
Severe bone, joint, and/or muscle pain has been reported in patients taking, by mouth, bisphosphonates
drugs that are used to treat osteoporosis (thin bones). However, such reports have been rare. This group
of drugs includes FOSAMAX. Most of the patients were postmenopausal women (women who had
stopped having periods). Patients developed pain within one day to several months after starting the
drug. Most patients experienced relief after stopping the drug. Patients who develop severe bone, joint,
and/or muscle pain after starting FOSAMAX should contact their physician."

See http://www.fosamax.com/fosamax/shared/docu.../ppi_weekly.pdf.

Take care, Momkat


[quote name='Cesca' post='114742' date='Feb 11 2006, 12:33 AM']
Here's another vote for discontinuing Fosamax and its ilk if taking it causes severe pain in muscles, joints, etc. I experienced tremendous pain in my neck, left shoulder, left upper and lower arm and wrist. I assumed causes that were mechanical - that my computer setup wasn't ergonomically correct, that my shoulder bag was too heavy, that I was sleeping in the wrong position, etc. So I changed my computer set up, reduced the content of my shoulder bag and bought bed pillows to change my sleep position. No significant improvement. Went to my primary care physician who recommended exercises and heat. They helped, but for a few brief hours. No over the counter pain medication could make a dent in this pain. I was convinced I had advanced arthritis. Then I read a post on Power Surge about other women taking the medication suffering the same kinds of pain. I took a deep breath and stopped the Fosamax. No improvement for a few months. Then a lessening of the pain began. I haven't taken that med for a year and have no regrets. I know the long term risks of not taking it, but no one seems to know the long term risks (besides excruciating pain) of taking it.
Cesca
[/quote]

Hi Cesca, I'm glad your pain has lessened. I have the same type symptoms after taking only one 150 mg tablet of Boniva about 4 months ago. Sure hope my pain will lessen too!

Momkat

Thanks to all who answered my post re: Fosamax. I am so confused and do not know what to do. should i stop taking it? or continue.....again my dr. said i have osteopenia.....and i should take the lowest dose......so far no side effects but i am not one to take meds so i was reluctant from the beginning. It seems like i have not heard anything good about this drug. I have been on it for about two months now. Is it okay to just stop taking it......What should i do.........any comments are appreciated......Help, I am soo confused. thanks Pudge

Hello Pudge,

My vote is still the same. Stop taking this type of drug immediately. Read all of the posts again. Check out all of the websites, and check out the other message boards on this Power Surge site, such as "Fosamax, anyone taking this?".

Also, take heed of this warning specifically for Boniva (but applicable for all bisphosphonates, including Fosamax) which I believe was added in 2005 by the FDA:

307 Jaw Osteonecrosis
308 Osteonecrosis, primarily in the jaw, has been reported in patients treated with
309 bisphosphonates. Most cases have been in cancer patients undergoing dental procedures,
310 but some have occurred in patients with postmenopausal osteoporosis or other diagnoses.
311 Known risk factors for osteonecrosis include a diagnosis of cancer, concomitant therapies
312 (e.g., chemotherapy, radiotherapy, corticosteroids), and co-morbid disorders (e.g.,
313 anemia, coagulopathy, infection, pre-existing dental disease). Most reported cases have
314 been in patients treated with bisphosphonates intravenously but some have been in
315 patients treated orally.
316 For patients who develop osteonecrosis of the jaw (ONJ) while on bisphosphonate
317 therapy, dental surgery may exacerbate the condition. For patients requiring dental
318 procedures, there are no data available to suggest whether discontinuation of
319 bisphosphonate treatment reduces the risk of ONJ. Clinical judgment of the treating
320 physician should guide the management plan of each patient based on individual
321 benefit/risk assessment.
V3.13
11
322 Musculoskeletal Pain
323 In postmarketing experience, severe and occasionally incapacitating bone, joint, and/or
324 muscle pain has been reported in patients taking bisphosphonates that are approved for
325 the prevention and treatment of osteoporosis (see ADVERSE REACTIONS). However,
326 such reports have been infrequent. This category of drugs include BONIVA (ibandronate
327 sodium) Tablets. Most of the patients were postmenopausal women. The time to onset of
328 symptoms varied from one day to several months after starting the drug. Most patients
329 had relief of symptoms after stopping. A subset had recurrence of symptoms when
330 rechallenged with the same drug or another bisphosphonate.

Kindest regards,

Momkat

From everything I have read, Fosamax, Actonel, etc. should not be taken for osteopenia, and this from leading bone specialists in this country. Dor

I surely wish I had never taken the drug Fosamax. Although I experienced two weeks of improvement in how I felt after stopping, everything seemed to plateau after that. My legs hurt badly everyday now along with my upper back. I had osteoarthritis when I began the drug last summer. Now the pain and stiffness is multiplied ten times over. Please be careful. I, too, had it prescribed for osteopenia. Guess what? A bone density check a couple of weeks ago showed normal density. I feel I was injured by a Rx that wasn't really needed and am wondering if I can find relief somehow. The MRI testing that has also been done since stopping Fosamax showed spinal stenosis that resulted from arthritic buildup. I am guessing that the bone spur formation had probably already started and the drug gave it that extra boost I didn't need.

If you are appalled by estrogens from horse urine put in our bodies, consider this. Sources I have consulted claim that these bisphosphonates stem from industrial solvents that were discovered to have the ability to harden bone. Can't we just stick to proper nutrition and exercise? Of course, there will always be a need for drugs but we need to be careful.

Cerise

I only took Actenol for one month and I will not take Bisphosphonates! I felt like I had a hot pocker lodged in my chest, the heartburn was constant.

I am looking everywhere for a natural alternative. I worked for a MD and he said that he felt those meds were poison. He took me off the synthetic hormones and prescribe a natrual hormone compound.

I just recently ordered a natural supplement in hopes that will help.

I feel very lost and unsure of what steps to take but I can not bring myself to take the Actenol. I really felt like I had taken poison.

Check into taking strontium. In America it can only be used as a supplement, but in Europe it is being used as a prescription. Both forms are getting good results and it was written up in the New England Journal of Medicine. He is a well known doctor in New York and has a radio show there. You can also research it on the net - look up strontium citrate. I take two per day at bedtime with no side effects at all. I have heard this from many women.

Take calcium with magnesium. The magnesium prevents diahrhea and is also needed to make bones supple. Those two can be taken in one pill. They can be found in health food stores or online. I use Natures Way as it is a well known company. You also need small amouonts of Vitamin D. Boron is also another necessary mineral.

Exercise is very important. Working out with weights three times per week is sufficient. Start slowly and with low weights and then build up. Walking is great, but should not replace the weights. I have spoken to women who use the mini trampolines and they claim this is great for bones and easy to do.

Hope this helps.

Dor

Hello everyone, I agree with Dor. Also, I have some information that Strontium Ranelate (which is used in Europe) may be even better than strontium citrate; however, I have not been able to locate a source for it in the USA. "Oral Strontium ranelate is the first in a new class of drugs called a Dual Action Bone Agents (DABA's), and has proven efficacy in the prevention of vertebral and non-vertebral fractures (including hip fracture). Strontium Ranelate works by stimulating the proliferation of osteoblast (bone building) cells, and inhibiting the proliferation of osteoclast (bone absorbing) cells. This means that strontium Ranelate increases BMD by forming new bone, rather than just preserving existing bone. In comparison to bisphosphonates which only act on one aspect of bone remodeling, strontium ranelate also preserves bone turnover, allowing the microarchitecture of the bone to be continuously repaired as it would in healthy bone. Strontium ranelate is taken as a 2g oral suspension daily, and is licenced for the treatment of osteoporosis to prevent vertebral and hip fracture (this may differ by country). Strontium ranelate has show significant efficacy at reducing both vertebral, and non-vertebral fractures in patients over the age of 80, who are the most at risk where osteoporosis is concerned. This is unique to strontium ranelate as bisphosphonates can only show efficacy in vertebral fracture reduction, not non-vertabral. Strontium ranelate has side effect benefits over the bisphosphonates, as it does not cause any form of upper GI side effect, which is the most common cause for medication withdrawal in osteoporosis."

If anyone has any information where we might be able to get this in the USA, PLEASE LET US KNOW.

Best Regards,

Momkat

Happy 4th of July to all!!
I stopped taking FOSAMAX three weeks ago..I decided after all i have read that it is not something i want to put into my body. I have had such leg pains. and some joint pain. I have never had these pains before . I am starting to think i could be developing arthritis? But after all i have read about the side effects I am sure it is from the FOSAMAX . I have been taking 35 mg since Jan. I still have some pain but it has only been three weeks since i stopped taking it. I mentioned it to my gyno the other day (although my GP is the one who prescribed it). and she said she never heard of leg pain caused by Fosamax..
How long does it take for the pain to go away once the drug is stopped. Thanks...Pudge

Hi Pudge, good to hear from you. Glad you have stopped taking this poison. I only took one tablet of Boniva 150 mg. in Oct. 2005, and incurred severe bone, joint, and muscle pain from it. My doctor put me on 500mg naprosyn twice a day, which helped the pain and the limitations of motion of my arms and shoulders. However, I now have blood in my stool which is probably from the naprosyn, so I am taking Tylenol for pain when I need it. After eight months, I believe I may finally be recovering from the effects of this horrible drug. Just hope it doesn't keep flaring up. Luv, Momkat

Something else I read about so-called osteopenia is that it can be a bogus term. Some women were born to be small boned, basically. But they compare everyone with this "average," even though it would not have fit some women even when they were 18 years old.

I suppose it would only make sense to diagnose a women as having thinning bones by comparing earlier scans with later ones. And even the scans can vary. They aren't perfect.

As for drugs, we are all just guinea pigs. The medical profession knows most people are too lazy and undisiplined to exercise vigorously (my doctor actually said this!), so they don't really encourage people to prevent bone loss naturally.