Help with questions for Cleveland Clinic doctor - Osteoporosis Message Board

thyme2b · 03-17-2007, 09:25 AM

I would appreciate your help with my list of questions.

I'm going to a new doctor at the Cleveland Clinic where they have a good osteoporosis clinic. The doctor, Dr. Licata has published about Forteo, which is why I'm going there. There is some travel expense and time off work involved, so I want to make the visit count.

I've put together an extensive list of questions to ask (maybe too extensive, but I hoping that this is a doc who likes to communicate). If you have any other questions, I'd appreciate your input. Or if you think one needn't be asked, or changed or added to, let me know that too. I plan to hand a copy of the list to the doctor and go over them with him. This is a rough draft. The bracketed items are notes to myself that won't go in the final copy as they are.

Perhaps you all can come up with more questions. I promise to post the answers to these questions for everyone's edification when I return. So if you have questions of your own, post them and if it seems to fit my case, I'll ask them too. I'd be most grateful for any insights.

CONTRIBUTING FACTORS

1. Family Hx? Both mother and father with osteoporosis. Both grandmothers. I’m assuming there is a mix of genes and multiple contributing factors. One brother like father has started breaking bones “for no reason at all” before the age of 60. [Does this have a testosterone connection?] I’m wondering about gluten sensitivity. The 3 of us have horrible GERD, but osteo started before the GERD treatments.

2. Gluten sensitivity? I read that that this is not primarily an absorption issue, but that there are anti-bone antibodies. What more might you know about this? [Print out these articles].

3. PPIs? and any other medications that might contribute. I take the max dose of Aciphex 2Xday. I had stage 2 GERD.

4. Causes/contributing factors?

FORTEO

5. Breaks in taking Forteo? I read something that said that these did not impact treatment. I’ve had several breaks due to travel. Long weekend to 10 days (flying home from Oregon took 12 hours due to flight delays). What is best?

SUPPLEMENT/MEDICATION W/FORTEO

6. Hypercalcemia risk? I had one slightly elevated serum calcium reading while on Forteo. I’ve cut my calcium intake, but am concerned that this will not maximize the Forteo. How do I discover the optimal dose of calcium? Should I take frequent blood calcium tests? What is the risk of not taking enough calcium? [Look at hx of blood calcium tests going back to beginning of my records before FORTEO . What was the average?]

7. Vitamin D? I currently take quite a bit of vitamin D though lower dose calcium. My last calcium test was ok.

8. Low dose hormones? Currently taking estrogen, testosterone days 1-25 in a.m. and progesterone days 1-11 in p.m. How might we determine whether this is negatively impacting the Forteo or enhancing it? [Can I find any research one way or the other? If not is there a theoretical risk due since both have anti-resorptive action].

9. Zinc? Is zinc 50-65 mg taken mid day a problem? I take Forteo before bedtime.

10. Strontium? What do you think about strontium ranelate if/when it gets approval in the U.S. What is your opinion of strontium citrate as a supplement?

11. Other supplements? I take other supplements that may help with osteoporosis, like Mg and Vitamin K. Anything that may be a problem? Anything that you recommend?

TESTING

12. The iDEXA: Have you used it? Do you recommend it? Do you know where I might go to get it? Do you know if BC/BS pays for it? Might I get a referral for it?

13. N-Teleopeptide test? It was used in the research on FORTEO. I’d like something more than a yearly dexascan. Is this useful? What are its limits? Other tests you recommend with this, or instead of it other than DEXA?

14. Others?

EXERCISE/EQUIPMENT

15. Elliptical machine? It is weight bearing? Is light running on a treadmill ok for someone with my profile? Bouncing on a minitrampoline with a stabilizing bar? (to shock the bones slightly).

16. The vibrating platform device? Any experience with it?

osteoblast · 03-17-2007, 10:59 AM

Thyme2B-now that you have stated that you are an avid researcher on the ntx thread , I have a suggestion for your Cleveland Clinic prep work. If you ****** on "osteoporosis and bone physiology" you will get to a site set up by Dr. Susan Ott , a bone metabolism specialist at the University of Washington.There is a significant amount of information there that would better inform you on controversial points etc. when speaking with the dr. Check out the section on treatment and then experimental/breakthrough treatments. There is mention of Mg with study results that have spooked me a bit off of Mg. Also mention of diuretic and K etc. ( I think Dr. Ott is very good, I wish I could see her but it turned out to be impossible. She really came out strong in the professional journals with her concerns about the risks of bisphosphonates-in my book, this is very much to her credit. She seems like a patient -centric dr.)
Take a look at the section on rank ligand inhibitors-denosumab. I read on the net a few weeks ago a press release from Amgen that denosumab would be the gold standard in osteo treatment by 2010. Yes, it was the co's self-serving statement but when I have questioned 2 specialists regarding what was coming down the pike- they showed no interest in strontium r. and big interest in denosumab. This would be one of my suggestions for a good question for the CC doctor.

Also your question on calcium intake -not too much so you don't go hypercalcemic but enough to support forteo bone building is of great interest to me because I too have this going on.

thyme2b · 03-17-2007, 11:59 AM

Thanks, Osteoblast. Dr. Susan Ott's work looks really good to me. She has a lot of information on celiac (gluten probs) that also looks valuable given my recent test results.

taape · 03-17-2007, 12:44 PM

I don't know if the breaks in the Forteo make a diffeernce or not. But I always took the Forteo with me so not to interrupt treatment. My Forteo was shipped in a cooler with great ice packs that last 24 hours. I traveled many places with the Forteo no problem, even on a long plane trip. It's a little bit of a hassle but not that much.

DesertBloom · 03-17-2007, 06:14 PM

Hi Thyme2be: Wow, it really looks like you've covered all of the questions that pertain to your particular circumstances with osteo, and the secondary causes as well. I hope you can get some good info on the relative relationship between celiac disease, and all the other concerns you have. I'm still waiting on the results of my test, the lab claims they faxed the celiac results to the gastro dr and of course they can't find it, so I'm still waiting for that to be resolved, and actually get it.

The only question I can think of right now, which doesn't pertain to you, is if this dr would ever recommend stopping cal entirely on an osteo patient with elevated serum ionized cal. It's no big deal if you can't ask this and I realize it would be tough to try and present it as a question that would apply to you, so don't worry about it if it's out of the question. My serum ion cal has only been normal once, but all others (pth, t3, t4, total serum cal, urinary cal, scarcoidosis, cancer etc etc) is always normal. I'll have to wait and see if the current mamo cyst that was found could explain the cal level, which is a likely possibility, but only if it is malignant, which I really doubt. Well enough about me, and let's really hope this dr is condusive to answering questions without any hesitation. I hope you get to see him/her more than once so you could cover anything that might come up after the first visit.

I noticed the conversation between you and osteoblast and ran across another mention about estrogen and forteo in the Univ of WA link that I constantly post by Susan Ott. I'll post the link to the page below, but it's only a one sentence or para about estrogen retarding the resorptive effects of PTH. If they can make this statement then I would think it has to be based on some study, even though my dr said there wasn't any. I'm still looking for some study, and will let you know if I find it. The statement is the last para on the page. Since I post the Univ WA/Dr Ott link adnauseum, I hope I'm not putting other posters off from reading the entire *course* because it is very long and I'm guessing over 100 pages or more, but very informative. This link has an email add if you ever wanted to try and contact her. I would suggest reading the following page re: estrogen as well, but it primarily talks about raloxefene taken with PTH, but the interesting point is the comment that says it's the *only* antiresorptive that works synergistically with PTH. This is what my min met dr wants me to take post forteo, provided nothing better comes along, and she doesn't think much of Stron. Ran. either and really doesn't like the citrate version at all, but for all who are on this, remember this is just "her opinion". Loma Linda is currently doing some research on new drugs, but I can't get much out of her on it since it's still in the animal and rat modeling stage. You can look it up, but the info is still pretty thin, in my opinion. The dr in charge of this is dr David Baylink who did a lot of the NASA testing on osteo and astronauts for many years.

One last thing, and that is my min met dr feels that the n-telopeptide test is good for determining if a drug is working, but it has it's flaws (mainly many types of lab mishandling probs or collecting it wrong, by the patient). I "don't want" to let this put anyone off from getting it, but it's not a dexa which is the definitive test for checking bmd progress. You mentioned having serum NTx tests, so wouldn't this really change the reference ranges compared to the 2 hr urine NTx and the 24 hr urine NTx?? Reference ranges for urinary and serum vary quite a bit. I'll post both of mine as soon as I have the 2nd test, I'm still trying to figure out if I should discontinue the low dose hormone before the test or not, since it will "definitely" effect the score, and will be very hard to compare to my baseline test with the presence of estrogen. I'm hoping that since I'm on the lowest dose manufactured, and only taking it every 3 days, hopefully the impact of it will be minimal. And of course my min met, doc said that it may not effect the (forteo) at all, but theorectically it should. I hate it when they leave the decision up to me.

[url]http://courses.washington.edu/bonephys/esteffects.html[/url]

Good luck with your appt I hope it goes very well!!! I'll be sending you my prayers and good wishes. Do we have a few more days to add to your list or are you leaving immediately. Most of my good question come to me when I'm asleep

strange huh.