Some of you may remember my great concern over the Osteoporosis meds I was either taking or would soon be put on. Well, I was referred to the Univ of Iowa Hosp and saw a Specialist in the Bone Clinic. Her specialty is Osteoporosis and bone diseases and I was truly impressed w/the amt of time she took w/me.

For now, she wants me to stay on the Boniva IV inj's every 3 months until next Dexascan in Dec, see her in Jan and then we will see where we are then. She did not want to put me on the Forteo daily injections, as that is the Big Gun and can only be used for 2 yrs. I was totally impressed w/her and she asked me a hundred questions and listened.
I had bloodwork done for a Vitamin D & calcium study, and she switched my type and amt of calcium & Vit D. I also had many X'rays taken on my spine and hip areas, as I have alot of pain there and have lost an inch in height. I'm now 5' 2". However, my posture is very good, so she's thinking some compression fx's in the hips may be the culprit. (I have taken several spills over the past yr.) I don't have the results back, as she was leaving for 10 days and said I could either talk to her nurse or wait for her to come back to call me. I opted to have the Dr, herself call me.

I feel like a huge weight has been lifted from my shoulders. Just getting another opinion and finding the proper channels to go through has made me feel so much more confident that I am managing the Osteo the best I can.

SO, that's my update and thanks for all the advice and encouragement I have received from all of you. It's been scary, but I feel like I am on the right path now.

If you need information on Forteo in the future...

A poster at PN, Silverlady, just posted about her favorable response to Forteo. (she has several fractures of the pelvis).

http://neurotalk.psychcentral.com/sh...ghlight=forteo

Thank you mrsD; I'll check it out. My Dr told me that Forteo is a great drug for rebuilding the foundation of the bone, but since I'm 53, she wants to hold off for at least a yr before going on it and see if the Boniva inj's hold off bone loss.

Thanks again.

DM,

I am so glad to hear that your appointment went so well. I sure hope they can get you on the right med for your osteoporosis.

I took my second once monthly Actonel and have been in pure misery the last 2 weeks. My back, ribs and knees have been the worst.

I felt some discomfort the first month but I had a failed back surgery in 1991 and always have pain. The pain was worse for a little while but not too bad.

I fell a few weeks ago and hit the wall in my hallway. I banged myself up pretty good. I was sore and bruised but glad I didn't break any bones. I was starting to feel better and could get around ok.

A week after the fall, I took my second Actonel and a few days later, my pain was just horrible. It was getting worse instead of better. I have been able to take a shower and that's about it for the last two weeks. I have been miserable and couldn't figure out what was wrong until I did some searching on the Internet and found all the site about pain from Actonel.

I am not taking anymore Actonel once monthly pills. I can't tolerate that much in my system at once. I see my PCP on the 25th and am going to ask her for a weekly dose of the generic Osteo med and see if that works.

I wish you luck with your doctor.

Oh I'm so glad you saw this doctor DM. I was so worried about you over this. It sounds like you're in good hands now. We want you to be in good shape for scrapping with AMN, you know.

I'm pleased you saw this doc as well DM as I've been waiting until you get your's sorted out, so I can give my own doctor your regime for me. Not only that, I'm really pleased that some-one is finally making sense for you.

Becky......I too started on Actonel, but after a month, I was waking up every morning between 4 and 5 am and rushing to the bathroom in order to worship the porcelain goddess! I haven't even told my doctor yet that I stopped taking them about 3 months ago. I daresay she'll notice soon that I'm not asking for repeat prescriptions.

Anne.... that is a very serious reaction to Actonel (or any other drug in the same family)

I think you should discuss this with your doctor. I know it is a bit scary, but it might signal that you have an erosion already, which needs attention.

Even if patients get simple heartburn, on these osteo drugs, that is serious enough for your doctor to know about it.

Stopping the medication was wise, but I think you should bring this up with your doctor anyway.

And anyone here who has similar experiences should also do so.

So glad everything worked out for you DM. We did a few second opinions on Jim last year too and was relieved to find he's getting the care he should be.

I talked to my doc about osteo meds and testing and he suggested we wait until I am 50 unless something starts popping up. As you know my mom has it so I am always concerned. He told me to take my calcium naturally like milk, etc. because he doesn't care for synthetic pills so early. We'll see. LOL

Anyway, I am glad your feeling good about the outcome and are being proactive.

Well, I have my next Boniva IV inj next Tues. I did the labwork yest, as the Dr always checks my BUN, creatinen and blood calcium first to make sure it is stable. They just called and it's a GO.

I found out something very interesting last Sat. I was at a family birthday GTG and was talking to a cousin who is currently in his 2nd yr of Forteo daily inj's. He was on the oral Boniva before that and when he went in for a dental procedure, the dentist found that he had developed necrosis of his jaw. Needless to say, he now has a titanium rod in his jaw. But, he had me feel his jawbone on his outside jaw, and asked me if I could feel the small hard bumps? (not visable on the face). It was new bone forming!! I was totally amazed.

Now, before I get all nervous about the jaw necrosis, etc, I have weighed and measured and had several opinions and am going to continue the Boniva inj's every 3 months until the end of the year. The idea of breaking a hip terrifies me more than anything. The only side effect I have noticed is a day of light flu like sx's.

So, guess it's like mrsD is saying~ if you have something ''different'' or are having side effects from these drugs, it's best to check w/your own Dr. Not treating the Osteo could result if fractures.

I really like getting the input from you all on your experiences, as this is not just a woman's disease; my cousin is in his 60's and is a male. How they found out he had Osteo was he broke his wrist, then a rib and his Dr ordered a bone density scan.

Thanks again..

DM,

My sister in law developed osteo necrosis also a couple of years ago in her early 50's. She was taking too high of a dose of Boniva. Her teeth and jaw are a mess.

We all just have to adjust these medications to what our bodies can tolerate.
I said that when I was on Avonex. I don't understand how these doctor's can prescribe a one dose fits all to these drugs. We are all different sizes, genders, weights and not all of us metabolize things the same way.

I had a terrible experience with Zocor (generic) that caused the "one in a million side effect" of muscle wasting in my thigh muscles. I don't believe for one minute that this side effect is one in a million. It went straight to the weak muscles where I was injecting Avonex. Now, I am off both Avonex and Zocor. I'm trying Niacin for cholesterol control.

In the mean time, my thigh muscles are toast with nerve and muscle damage that is apparently permanent since it's been almost a year. I have to take 2 Neurontin three times a day for that.

I was diagnosed with MS in 1992 and this last year has been the worst since the onset and eventual SPMS in 1993. All these drugs causing problems and they aren't even related to MS. It hacks me off.

Don't get me wrong, I love my PCP and Neuro and they are trying to help me. I just don't think the drug companies are providing them with the necessary information.

I spoke to two close friends yesterday about once a week generic Fosamax and neither of them are having any side effects. That made me feel better so I am going to tell my PCP about it. It may or may not work for me but I can't tolerate this pain. It is finally a little better today.

DM, you are right about it not being a woman's disease. My Dad who is 82, had a compressed fracture in his back in January from getting out of bed. He had a procedure done to fill the fracture but it has really taken it's toll on his already fragile health. He has Osteoporosis and didn't even know it because his bone density scans came out fine.

I hate to tell negative things but this is a very serious subject to those of us with the Osteoporosis diagnosis.

Hugs,
Becky