NeuroTalk Support Groups - Off Topic: This is something I have to share

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You're on Forteo. I'm so glad. Despite the changes in my pn, I am glad I took it for two months; it helped. And I don't think you need to track the pn with this; what I expereienced was so different from my normal pn, it was clear something else was happening to me. And it did reverse. Could have been a virus, or electrolytes. Could have been the forteo, but it went away, so that's good.

I was told to take 500mg Calcium and, I forget how many of Vit D, with it. Were you told the same? I found the pen quite easy to use; hope you do alsol

Good luck.

That brought tears

I can sooo relate to that poem. My pain is nowhere near as bad as most of y'alls but I still feel the changes this has brought to my life. Unexpected changes. Thanks for posting that.

Liza Jane,
He's too new to this medication. No instructions at all. But I read all the data that came with the med. Have to stop the Actonel, MiCalcitin. But I wasn't sure what to do about the calcium and vit. D.

He did tell me to try to see the endocrinologist again. I've called her office today. They don't communicate very well. They only take messages and later someone returns them. Took 3 weeks the first time.:cool:

I'm actually afraid to start the Forteo. I am not sure about my calcium level and the vitamin D. I have one more capsule to take of the vit. D. It's 50,000units. Am I to buy some Vit. D and take it along with this med?

Mrs. D or Liza Jane, I need a little help here.

Billye

this is beyond me...

so I went looking for you.

http://content.nejm.org/cgi/content/extract/353/6/634
So that article says they do not agree with Dr. Licata (who works for Lilly)

Here is Dr. Licata's take from Medscape:

Quote:

Calcium and vitamin D in patients on teriparatide for osteoporosis

Zosia Chustecka
Information from Industry
Assess clinically focused product information on Medscape.

* Click Here for Product Infosites -- Information from Industry.

May 4, 2005

Cleveland, OH - In clinical practice, the doses for calcium and vitamin-D supplements that are recommended by national guidelines for use in osteoporosis may be too high for patients who are undergoing treatment with the parathyroid hormone teriparatide (Forteo, Lilly) [1]. Having found persistent hypercalcemia developing in several patients on this drug, Dr Angelo Licata (Cleveland Clinic, OH) now limits the use of these supplements and suggests that other physicians do likewise.

Writing in a letter in the May 5, 2005 issue of the New England Journal of Medicine, Licata explains that when starting teriparatide therapy he now maintains patients on daily elemental calcium at 1000 mg or less to keep the serum level of calcium below 10 mg/dL and does not give supplemental vitamin D at all if the basal level is greater than 20 ng/mL. "This approach may be useful for practitioners as a way to prevent hypercalcemia in clinical practice," he says.

The recommendation is made after close surveillance of 12 patients, which was prompted by a finding of persistent hypercalcemia (serum calcium levels of 11-11.5 mg/dL) in 3 patients during initial use of teriparatide. In addition to this drug, all 12 patients were taking calcium (mean daily dose 1100 mg), and 10 patients were also taking vitamin D (mean daily dose 355+200 IU). During the first 3 months of treatment, there was a decrease in the levels of intact parathyroid hormone and in levels of 25-hydroxyvitamin D and an increase in the levels of total serum calcium and 1,25-dihydroxyvitamin D.

The fact there was a substantial rise in serum 1,25-dihydroxyvitamin D levels in the presence of decreased levels of intact parathyroid hormone and increased levels of calcium suggests that teriparatide affects the serum concentration of vitamin D even in the presence of physiological signals that normally decrease its concentration, says Licata.

Licata has served as a clinical investigator for Lilly and NPS Pharmaceuticals and has received lecturer fees from Lilly.

So you see, the problem? No one agrees on what to do. I don't trust anyone who works for Lilly...that is my opinion however. They don't have a good track record for honesty.

Here is a post at Healthboards...where a gal took Vit D and Forteo together..
http://www.healthboards.com/boards/s...=427963&page=2
Page 1 about Forteo:
http://www.healthboards.com/boards/s...+D+with+Forteo

http://osteoporosis.emedtv.com/forteo/forteo.html
Looks like you need to call your doctor back and get exact directions.

I am not going to make any recommendations, because this is beyond me,
and my experience.

Mrs. D,
I'll get specific instructions before I start. I'm really unsure about all of it. It looks like I need to continue the calcium and D, but dosage isn't specific.

Thanks for all your work.
Billye

I was always stuff rocks in the family and the pround one,but when a huge room of various Dr's jam in far to close you can only think which one didn't take a shower. And they tell you in all kinds of ways you were going to loose your leg. I decided a potapot didn't sound so bad..I have one of those silly things next to me now..And it's not over i have a way to go..But dang i want that leg more than my pride right now. I'm not fussinf at you ,you vent and cry and holler but if you get a pot carefull sitting down there not made for comfort...Good luck sweetie,everthing should be your choice..Just having the
tests for sj sysdrom is weird.:hug::hug::hug::hug: Sue

I'll call you and walk you through. Also, there's a Forteo consumer support number that should have come with the pen.

Gee Billye! What or Who is on First?

I do know that IDUNNO is on third tho!
I would call that Forteo support number and work it for all it is worth!
They probably will not have all the answers for you, but you bet their boots it's in their best interests to find out and pick the best minds they can find to get the answers. I believe it is called covering their own butts? I for one am not shy about making the drug companies work for their bucks.

Thanks to your misfortunes I have learned that calling, asking, and learning is the best defense I have-the only one maybe as I feel docs never read those inserts - noway nohow. Since my cancer and going off HRT and on to the estrogen blockers, also having long term use of Fosamax and now the 'adventure' of dental root 'resporbtion' I do know what quandry you are in! Any which way you turn, there are risks. It is a scary prospect, and one that is not fun by any means, especially when one seems to 'fracture' if you look at a pebble the wrong way.

We aren't the only ones who are on multiple meds and suffering from new and unusual experiences. I've learned this from many good Cancer boards. Folks there are also suffering as a result of Chemo and Radiation treatments, and are on the leading edge, both research wise and vocally about the benefits vs. side effects. THEY ARE VOCAL! And there are a lot of them being vocal-thus effective. Those complaints are really getting docs, researchers and pharmacy companies standing up and paying attention to all that we take to 'help' us, then suffer a myriad of other consequences not known.

I wish I had a magic wand to make your pain and that of others go away! I truly do! I don't know about you, but I sure would like one perfect 'band-aid' on at least one problem with a mommy-type kiss to make it better. You know what I mean. Soo for now, Multiple hugs to you and I hope that you have at least one pain-free moment! - j

Billye,
I've not posted much recently and just started to catch-up with this thread. It seems to me that you've had way more than "your share of trials to bear" and I am SO SORRY for all that you are dealing with right now.

The sad reality for many of us is that even in a somewhat controlled environment no-one anywhere REALLY understands or equally importantly can begin to predict the types of synergies or interactions from multiple drugs for multiple conditions much less with the added complexity of individual physiology, metabolism, biochemistry, etc., etc.

I can't offer any clear advice or insights - your situation with multiple meds for multiple problems is well beyond my limited abilities but I am sending you as many good thoughts as possible for some real and lasting relief while you sort this out.
:hug::hug::hug:

Alkymst

Sed Rate is down. My Rheumatologist called at 10:10 last night. Obviously this is bothering him too. He was behind all day because their computer was down when I was in the office and people were stacking up like a load of logs. I knew he would have a hard day. But he took the time at 10:10 p.m. to call and let me know that the sed rate was down and I don't have to add the Plaquenil or steriods to my regimen. He also commented to my husband that perhaps the lower dose of methotrexate was what was causing the fractures. In other words, allowing the RA to "eat more bones". Who knows, but maybe I've turned a corner finally. I'm waiting to start the Forteo until I talk to the Endo. I'd like her regimen to be followed. She's experienced with it, he's not.

Now to just get over this break. By the way, I do not recommend a Temperpedic mattress to anyone who is suffering with a lumbar, hip or pelvic problem. It doesn't permit you to scoot and it is a real **tch to get out of or on to. It grabs you and won't let go.

Billye