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Osteoporosis Message Board

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Re: Forteo
Aug 27, 2004
I have stopped using Forteo as I was experiencing some real terrible reactions about 3/4 of an hour after my injection into my stomach. I started trembling uncontrollable and was freezing, crawled into bed and finally calmed down but then had extreme "hots"
(had this happen about 5 times)
Contacted my Dr. who told me to stop, which I was going to do, and then he put me on Actonel - 6 month bone density showed improvement (Aug) My 10 month bone Density while on Forteo showed my going backward. I am also taking calcium and Vitamin D with my Actonel. No reactions to anything.
I should of placed this Post before now, sorry. My hip has gone from osteoporosis to osteopenia. Will definitely stay on this schedule. Seeing my Specialist in Sept.
Re: Forteo
Feb 17, 2005
Jacque, you have me totally confused! In your earliest post you said that you started Forteo in March 2003 and had significant improvement in DEXA scan by December 2003.

Then in August 2004 you stated you had stopped Forteo and started Actonel and that a 6 month bone density after Actonel showed improvement (Aug) whilst a 10 month bone Density while on Forteo showed you going backward.

How in the devil are you even managing to get your insurance company to pay for so many DEXA scans so close together??? And can you clarify your Forteo/Actonel results for us? Whilst you were on Forteo did you have regular bloods draws? How often and for what?

OldBones and others taking Forteo: Do you have regular blood draws? How often? Which blood draws are they?

Serena and LinLinn: Peregrine is correct, osteoporosis doesn't cause pain unless there are fractures (these can be very minute stress fractures, not necessarily obvious bone breakage). However, osteomalacia does cause pain and is common in conjunction with osteoporosis and is treated w/high prescription levels of vitamin D in gel cap form.
Re: Forteo
Feb 22, 2005
Thank you. I appreciate your sharing that info. I had to have similar tests as well. Then my Endo decided to treat me for osteomalacia first so still haven't started Forteo. She wants my PTH above 30 (reference range 10-65) but I've forgotten or she didn't mention how much higher she wants my Vitamin D 25 hydroxy before she will start me on Forteo. It was confusing to me because these two results plus both my serum calcium and ionized calcium were w/in normal reference ranges.

Are you treating with an Endocrinologist for your osteoporosis, or what specialty?
Re: Forteo
Feb 22, 2005
[QUOTE=CrohnieToo]Are you treating with an Endocrinologist for your osteoporosis, or what specialty?[/QUOTE]
My rheumatologist ordered all the labs before I started Forteo but my GP actually wrote the prescription because I had an appointment with him immediately after my lab results were in. They had several conversations by phone to discuss my bone problems because I had fractures and they both decided that I needed to start the injections quickly. I see my rheumatologist every three months (I also have Lupus) and he does my labs and faxes a copy to my GP. My rheumy is 100 miles away and my GP is close by so it was just more convenient for him to write my first prescription. I also have an orthopedic doctor involved but he had never heard of Forteo (scarey thought!) until I started on it and I took him the literature. He knows a lot more about it now and was impressed with my increase in bone density.

I don't understand why your endocrinologist wants to have your 25 Hydroxy- Vitamin D and PTH at a certain level. As far as I know, my rheumatologist just wanted to make sure that mine were in the normal range. However, if my tests were borderline, he might have postponed the Forteo to make sure my parathyroid wasn't the culprit. I have misplaced my test results so I can't tell you whether my lab results were well within the normal range or borderline. :confused: I need to get another copy from one of my doctors. It sounds confusing to have three doctors involved but they keep each other informed which is a miracle in itself.

Re: Forteo
Feb 23, 2005
[QUOTE=Oldbones] ... I don't understand why your endocrinologist wants to have your 25 Hydroxy- Vitamin D and PTH at a certain level. As far as I know, my rheumatologist just wanted to make sure that mine were in the normal range. ... It sounds confusing to have three doctors involved but they keep each other informed which is a miracle in itself.Oldbones[/QUOTE]
I'm not sure myself exactly why my Endo insists on this. I do know that she suspects osteomalacia. But she didn't feel there was any need for a bone biopsy. I'll be asking more questions when I see her again on the 1st.

You are ever so right about your three doctors keeping each other informed being a miracle! THAT has been a BIG problem for me. I suppose the HIPPA has something to do with it but its a real PITA!!!!
Re: Forteo
Apr 24, 2005
One more thing about the bone scan. I read in one of the osteoporosis books I've been reading that bone density scan results vary depending on the time of year because of exposure to the sun (I guess the Vitamin D makes the difference). Anyway, it seems to me that repeating a scan in six months wouldn't give a reliable comparison then. As I understand it, my scan in August might be much better than the scan I had in December because of my sun exposure of a few months at that point. I'd feel great about that, but then if the scan were repeated in December when I had my first one done, I might be right where I started. Or the reverse, you could look worse if you get a second scan at a time when you've been without sun for awhile and really get upset. Anyway, I'm no expert -- just passing along what I read. Maybe you should ask your doctor if there's anything to this. My doctor told me to repeat the scan in about 19 months. That would create the same problem of the scan not being done at the same time of year. I want to find out more about this before I repeat my scan. If I see any gains, I'd like to believe they're really there and not just part of a seasonal variation in my bone density.
Re: Forteo
Apr 25, 2005
In August 2004 I spent two weeks visiting my son in Florida. In October I went to an endocrinologist where I had extensive blood work and urine testing done. The results showed a high level of vitamin D. I was asked if I had been in the sun a lot and of course I was. My next test will be in May and in this state we rarely see the sun in the winter months. So we will see what my vitamin D level will be this time.
Re: Forteo
Nov 10, 2005
:angel: [QUOTE=BobbyJo]My doctor just recently prescribed Forteo. My health insurance wouldn't pay for it and I can't afford the $700 for 4 doses. I didn't like Fosamax. I felt like it was destroying my stomach. I am hoping the price of Forteo will go down to a reasonable amount soon.[/QUOTE]

Hello to you all ...and Bobby Jo too ...I am in the same spot as you are I think ..but I am in Canada ..Ontario actually...where do you live? My health plan will only cover a total of 1200 dollars in prescriptions per year so Forteo is about 1000 a month and at least 18 months are recommended so that will not work out for me. Same as you I think. Being in Ontario we have the Trillium Drug Plan which is purported to help pay for necessary drugs but Forteo is not on the Trillium list of drugs that Ontario will pay for? Why? I am sure in need of it just like the people who are on it are? So what do I do now? I doubt if I could get another insurance to cover me. What are others like us doing. I have written to the Osteoporosis Associations and am asking them to please lobby the politicitians about this as I will be a big expense to Ontario if I break as spinal disc or hip as that is very costly (and I sure hope it does not happen to any of us ) so the C anadian government should fund this drug. It would be cheaper. So...any advice for those of us who c annot afford it and need it very much. Other than winning the lottery I mean. Just kidding. So ...ideas welcome. Yes, I could wait until it is cheaper. How long is that? Maybe we could work for Forteo and help out in the back or something. You know, and get some free or something. So ...what do you think? Could we work for a company with a good drug plan..Home Depot or Wall Mart? Do they cover it? I am thinking of trying that or putting a mortagage on the house (I am kind of old for that stress but .....well is probably the best interests re my spine and hips, but not my pocketbook though) Quite stressful isn't it? Ideas welcome. Did I buy a lottery ticket? Yes, but then one must think of better ideas I guess. Thanks to all for ideas on this. bye then :wave: ps right now I am on nothing but calcium and vitamin D and that does not seem right to me ... :confused:

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