FOSAMAX? UMMMMMM NOOOOOO

Bones, joints and muscles
1

Hi all,

I hope you are all comfy this evening, where ever you are.

I'm here to talk Fosamax. I was diagnosed with GCA and PMR in early June. Am presently on high dose steroids to first knock down GCA. At the initial meeting with the Rheumatologist he prescribed Fosamax, a drug I swore I would never, ever take. I capitulated and started, have done 3 doses now.

My bones are GOOD. My routine bone density test of May showed that at 63 yo I am "denser" than 75% of the women in my age group. (I've been quite proud of this.) However, since I have Secondary Progressive MS, the Rheum sees me as a high risk fall candidate. Actually, the opposite is the truth, as I have braces on my lower legs that keep me very steady and when outside of the house, I use a walker. I am very careful and safe. And 98% of my life is spent in my home and in my yard, where I have a large wheeled walker to use on the lawn. We have more safety rails inside and out than Home Depot.

I have bony growths along my lower gum line and on the roof of my mouth, called "Tori." Hereditary condition. After my third dose of Fosamax, the Tori underwent a crazy accelerated rate of growth and were very sore. I went to show the dentist and he could tell that the Tori were angry. Existing areas had expanded out and new areas had appeared. Two new growths are on an area where there previously were no Tori at all. The dentist did search the web for info for Fosamax and Tori growth but came up with nothing. Doesn't matter, my mouth is my story.

Bottom Line: I AM DONE WITH FOSAMAX! With the length of treatment time and amount of Prednisone needed for GCA and THEN PMR, I'll have to have my mouth reconstructed if I continue to use this med, which is obviously affecting the Tori in my mouth.

My question: What should I take instead to protect my bones as best as I can? Foods, Calcium, Vitamin D, how much of what?

I figure that the answer to this lies among someone here. I'm sure the Rheumatologist is not going to be please, but oh, well, it's my mouth. My husband took one look tonight and said "OK you are done with that stuff." It's nice to have backup!

I will appreciate any advice you can bring to me.

Peace, Angela

2

Good bones, no problems. But I was diagnosed this and took it - just in case.

3

What are your actual t-scores? They would be helpful.

I imagine Anhaga had offered a useful link but the mods didn’t agree. I’ll try to sort that somehow.

She increased her bone density by supplements and exercise - the exercise side won’t be much use to you. Her supplement regimen will though and anything is better than nothing. But your fracture risk seems fairly well covered!

You should have been told to take calcium and vit D. The usual dose is 2 tablets per day, 500mg calcium/400IU vit D. There are higher doses that mean 1x daily - the body doesn’t absorb more than about 600mg calcium at one time, 2x is better. More vit D may be helpful providing your blood level is OK (not high).

4

Hello Eileen and thank you for your reply.

The rheum never discussed any option aside from FOSAMAX. Thank you for providing the calcium and vitamin D info. I knew that was an option, just did not know dosage frequency etc.

As for the T scores, I do not personally go into great depth on the numbers etc. of these complex tests. The numbers were reviewed by the bone health center, my neurologist, rheumatologist, physiatrist and PCP and all agreed that my bones are in a great state. I do pay very close attention to any bloodwork I have done, as those are results I understand.

I am pretty new here and so do not know anyone here by name, experience, etc. Anhaga’s answer looked like a cut and paste commercial or spam kind of answer and I’m not going to go offsite googling and following leads. I flagged it.

5

I think it is very unlikely Anhaga would post spam - even if it was a website it will be one with useful and sensible info. If she puts in a link - it is worth following up.

I ask the scores because knowing what degree of osteopenia you have is a very handy argument against using bisphosphonates which is about all most rheumies can think of. I imagine that all the bone building medications would have similar effects on the tori and I wouldn’t like to experiment! But my bottom line is - if my bones are in a great state then I don’t think I need bisphosphonates.

But be grateful you weren’t persuaded to have an infusion - they work for a long time and you can’t reverse taking them!

6

Hello Eileen and thank you for your reply,

Obviously I’ve learned about Anhaga now and won’t make that mistake again. It takes a while for me to get comfy at a message board, or anywhere, on the internet. I’d rather not use technology at all, but it is useful in this day and age.

The reports are that I have no osteopenia whatsoever. I’ll see if all of the numbers are in the online report, I cannot remember at this point.

This fast growth of the Tori is a very scary thing. They’ve been growing very slowly over my adult years, and the dentist has always felt they’d do just that and never require removal surgery. They really hurt right now and are very angry. I’d not expect anything to be red and angry while I’m on prednisone, unless an infection arises, and there is no infection in the Tori.

My rheumatologist is not going to respect or support my decision, and I’m sure if I do at some point suffer a fracture I might get an “I told you so.” But, I’m not in this to be voted class president, I’m making thoughtful decisions about what is right for me. Requiring extensive removal of Tori in the future would not be a healthy or wise decision in any way.

7

I wish I could remember what I posted. I likely only mentioned how to find my story which is on another moderated forum.

8

Anhaga,

I assume that is the case, but I do not remember things very well one day to the next so cannot say well you typed "… " that. I believe it was a succinct set of facts of where to search for what, and it was the lack of “conversational tone” that put me off.

I have apologized for the misunderstanding and that is sincere.

9

Here are the scores of my recent DXA screening. The earlier study they compared to was done when I was 58. I am 63 now. Note: if any of these numbers make no sense, please let me know, could be a typo!

Lumbar Spine: included L3-L4
Spine total BMD: 1.130g/cm2 (T= 0.3, Z = 2.0)
Change from most recent: .056 (5.2%)*
Spine change from badseline: .056 (5.2%)*
*denotes significance at 95% confidence level, LSC is .022 g/cm2

Left Hip: Total BMD: 0.923/cm2 (T = -.0.2, Z=1.0)
Left Femoral Neck: .922 g/cm2 (T = .6, Z =2.1)
Left Hip Change: -.095 (9.4%)* From baseline: -.110 (-10.6%)*
*Significance at 95% confidence leve, LSC is .027 g/cm2

All T-scores for spine Total, Hip Total, Femoral Neck, at or above -1.0.

I have been a crazy outdoorswoman all my life (until MS stopped that madness) and have done some insanely fun stuff out there, have never broken a bone. With MS I’ve had a couple of darn hard falls and broke nothing.

10

Anhaga,

I have posted below the #'s from a DXA scan done in May. I went around the web looking at what the #‘s mean, as I’d only taken the doctors’ words that all was well. Hadn’t looked any further.

From what I found, I am indeed in very good bone health. So I will search for your story in the hope that I can avoid using Fosamax. That MS keeps me from doing weight bearing exercise is an issue, but maybe using things that feel heavy to me would suffice.

It is a dilemma to me… take the risks of wrecking my mouth further or take the chance of wrecking my bones. This is not easy, any of it. Today a new boney growth of Tori showed up in a previously free Tori free area of my gum. My last dose of Fosamax was last Saturday… I’m guessing it’s got a very long 1/2 life. This is such a great big concern.

I appreciate the time you have taken to share your story and success.

11

I apologise for that. I was, I believe, short of time and just fired off the basics. One of the problems with digital communication. No body language to complete the picture. Some one must be overseeing your MS treatment. Would they be able to give you some guidance about weight bearing? I don’t know if a weighted vest is a suitable option. There is a kind you can get where small weights can be added over time to gradually increase the weight. As the bones respond to the weight increase, not the total amount you are carrying, but the new stress of a higher weight, this might possibly be something you could consider.

12

Thank you Anhaga, You and I do view online communications with the same eyes! It is a nearly impossible form of communication at times, but somehow we all figure it out. I recently moderated a chat room associated with a streaming cam of a loon nest and hatch, and that digital communication by many in one room was a nightmare I’ll not repeat.

Thank you for that suggestion about a way to do weight bearing. I will be seeing my neuro next week and I’ve put this on my list. I have a great PT to help me also..

My bone density is so good for my age, I want to hold onto that as much as possible. But with the Tori growth, diverticulosis with 4 cases of diverticulitis, cardiac PVC’s, and now the current study of femur breaks in 5 year use of Fosamax (Harvard Health Journal) I am more than a bit freaked out by Fosamax.

Interesting side note on my dense bones (report above) is that I was a pack a day smoker for 35 years and now smoke 2 cigarettes a day (silly, I know). My bones are just good ones perhaps. But prednisone is nothing to sneeze at.

I will read your story well and follow the calcium/Vit D and diet and exercise route

Gracious Thanks

13

With those scores NOTHING would induce me to take bisphosphonates of any sort. They are not far off the figures expected for a 30-year old and taking bisphosphonates have only downsides - your bone density doesn’t need increasing.

may be helpful in understanding your results and explaining why I think what I think!

Given your tori - I think “thanks but no thanks” is the conclusion.

14

Hi Eileen,

Thank you so much for going over my bone density numbers and giving me the real world meaning of them. Reading that they are what one would expect in a 30 year old is much more informative than a bunch of doctors saying “they’re good.” How I have retained this level of bone density may be explained by my lifestyle before MS knocked me down. I am only 5 feet tall yet throughout my life have carried more, gone further, hiked higher, etc. than others taller and stronger than I am.

I definitely will NOT take FOSAMAX there is no sane reason why I should. I need to protect what I’ve got.

Thank you again for this real world answer to this dilemma, which is no longer a dilemma at all.

15

That is what I try to do on the forums: turn vague or medical comments into real life.

16

Eileen, You certainly reached your goal with my question and I suspect that you do with many others. I truly appreciate your help which will now turn me in the logical direction of employing Anhaga’s methods.

I will continue to stand tall! When I had my scan done, they measured my height… 5’ on the nose, and if one looked at my medical records from high school, that is exactly what they would see, 5’ tall. Nice to know something in this auto immune body is working right!!

Grateful thanks.

17

Eileenh, I called you the forum’s Angel a few years ago and I was correct! :slightly_smiling_face: