osteoblast
05-18-2008, 04:02 PM
I have been back and forth on this issue.
My new bone doc and pcp on balance are thinking that for me HRT benefits outweigh risks now considering my osteoporosis -3.5 in spine . My hips are now in osteopenia (after 18 months forteo).I am 55, post meno about 6 yrs.
I was scripted-vivelle dot .0375 2x/wk and prometrium 100mg(10days every 3 months) I really don't understand the regimen yet.There is more writing on the script that I do not understand. I am still wrapping my head around doing this.
I am aware of the cancer risks. In fact, I started a few threads here about serious risks of hrt. I am just wondering is anyone else here doing hrt for their bones?
Anyone else with vivelle/prometrium exp. -If so, can you tell me what to expect starting this program? Am I in for a wild ride, or does it usually proceed smoothly.
Just to throw in a bit more complication-I tried estrace earlier this yr-quit after one month ,too messy. I researched and vagifem, a tablet form sure seems like it would be easier. Anybody on vagifem? Also does anyone know would you do HRT plus vagifem or does the HRT just do the whole thing so you don't need to do a vag. treatment?
I had so much on my agenda when I talked to the pcp that we didn't have time for alot of detail.In a bit I will go to the gyn for more counselling /follow up on this but right now I have too much going on.So, any info would be appreciated . Thanks:)
My new bone doc and pcp on balance are thinking that for me HRT benefits outweigh risks now considering my osteoporosis -3.5 in spine . My hips are now in osteopenia (after 18 months forteo).I am 55, post meno about 6 yrs.
I was scripted-vivelle dot .0375 2x/wk and prometrium 100mg(10days every 3 months) I really don't understand the regimen yet.There is more writing on the script that I do not understand. I am still wrapping my head around doing this.
I am aware of the cancer risks. In fact, I started a few threads here about serious risks of hrt. I am just wondering is anyone else here doing hrt for their bones?
Anyone else with vivelle/prometrium exp. -If so, can you tell me what to expect starting this program? Am I in for a wild ride, or does it usually proceed smoothly.
Just to throw in a bit more complication-I tried estrace earlier this yr-quit after one month ,too messy. I researched and vagifem, a tablet form sure seems like it would be easier. Anybody on vagifem? Also does anyone know would you do HRT plus vagifem or does the HRT just do the whole thing so you don't need to do a vag. treatment?
I had so much on my agenda when I talked to the pcp that we didn't have time for alot of detail.In a bit I will go to the gyn for more counselling /follow up on this but right now I have too much going on.So, any info would be appreciated . Thanks:)
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DesertBloom
05-18-2008, 07:25 PM
Hi Osteo: As you know I was on HRT for a time, and the pluses *seemed* to outweight the minuses. I sleept better, felt less emotional, my hair got thicker, skin improved, hot flashes and night sweats went away.
On the negative side I developed more breast and ovarian cysts, but I'm not sure I can absolutely blame the increase on HRT. I'll never know if my bones improved because I wasn't on it long enough, and as you know my NTx declined some.
The only things I think you will notice, are the positive side effects. I didn't need the vag creme because the hormones took care of the dryness etc.
My husbands oncologist is convinced that HRT is the cause of my breast cysts, even though I'm fibrocystic. When I was on it longer, years ago, I developed over a dozen cysts which went away after I stopped taking it.
I never took the brand of HRT that you mentioned so I can't say if that would be any different. As soon as I went off the hormones all of my benefits stopped. I haven't had another NTx, so I don't know what that is, and will probably wait until I've been on Evista for awhile to get a new dxa and NTx.
I'll finish the Forteo at the end of June, and you absolutely can't take Evista and HRT together for some reason. I haven't looked into that issue, but have been told that by the drug mfg and several Drs.
I hope you don't have any problems, if you decide to take it, and I'm sure it will help your bones in some way; it's still confusing about the combo of HRT and Forteo. Some say you can take both, the Forteo and HRT, and some say you can't.
Good Luck, if I can think of any thing else about this topic I'll repost.
I haven't had a chance to post the article you asked about because I gave my copy to the Endo, but I got it from the World Journal of Surgical Oncology(2008), and I'll have to get back to you on the authors, because I can't remember all the names. I printed it in a hurry and didn't save it on the computer. I think the title was: Parathyroid Adenoma Producing PTHrP with Hypercalcemia and normal PTH level.
:wave:
On the negative side I developed more breast and ovarian cysts, but I'm not sure I can absolutely blame the increase on HRT. I'll never know if my bones improved because I wasn't on it long enough, and as you know my NTx declined some.
The only things I think you will notice, are the positive side effects. I didn't need the vag creme because the hormones took care of the dryness etc.
My husbands oncologist is convinced that HRT is the cause of my breast cysts, even though I'm fibrocystic. When I was on it longer, years ago, I developed over a dozen cysts which went away after I stopped taking it.
I never took the brand of HRT that you mentioned so I can't say if that would be any different. As soon as I went off the hormones all of my benefits stopped. I haven't had another NTx, so I don't know what that is, and will probably wait until I've been on Evista for awhile to get a new dxa and NTx.
I'll finish the Forteo at the end of June, and you absolutely can't take Evista and HRT together for some reason. I haven't looked into that issue, but have been told that by the drug mfg and several Drs.
I hope you don't have any problems, if you decide to take it, and I'm sure it will help your bones in some way; it's still confusing about the combo of HRT and Forteo. Some say you can take both, the Forteo and HRT, and some say you can't.
Good Luck, if I can think of any thing else about this topic I'll repost.
I haven't had a chance to post the article you asked about because I gave my copy to the Endo, but I got it from the World Journal of Surgical Oncology(2008), and I'll have to get back to you on the authors, because I can't remember all the names. I printed it in a hurry and didn't save it on the computer. I think the title was: Parathyroid Adenoma Producing PTHrP with Hypercalcemia and normal PTH level.
:wave:
osteoblast
05-18-2008, 08:59 PM
Thanks DB for your input-I have reached the point where I do not think that I will know whether forteo plus HRT is good or bad. I am going to have to rely on the bone expert , who thankfully knows more than I do :). Also about HRT whether it is good/bad is so difficult as well. Next time I see the doc, she will have my mri results and we should know more aboutthe lumbar hemangiomas. Then I suppose a course of treatment will be determined-stop/continue forteo add hrt or not, a bisphos?Or evista-that wasn't talked about. Right now I have no idea where this is going. Just hoping for some improvement.
Evista sounds like a good follow up for you ,considering the options that we have.Hopefully you will be able to tolerate that well. Have you seen the studies on forteo followed by evista? You must at least be pretty happy regarding your bone improvement. I hope that your other issues are going to be resolved as well. Let us know how it goes with the parathyroid issue. Take care.
Evista sounds like a good follow up for you ,considering the options that we have.Hopefully you will be able to tolerate that well. Have you seen the studies on forteo followed by evista? You must at least be pretty happy regarding your bone improvement. I hope that your other issues are going to be resolved as well. Let us know how it goes with the parathyroid issue. Take care.
indersonu
05-19-2008, 05:49 PM
Hi there,
I was on birth control and it did increase my bone density. However it gave me a blood clot in my leg. Make sure that you get your liver values get monitered and if possible ask to be put on a blood thinner at the same time so that you don't develop blood clots.
Evista carries the same risks of blood clots and diminishes estrogen production in your body, biosophates create jaw problems, and cannot be take for more then five years.
As far as cancer risks monitor how you feel on the hormones. If you feel, breast tenderness, or increase of cysts you could always ask for evista.
Talk to a friend or family member about this so you could make a educted decision.
Most of all make sure that your not hyper thyroid, you calcium and vitamin d levels are ok.
Try to do weight bearing excercises at least minimum one hour a day.
I know this is hard for you. I am in the same boat as you. I am 32 and in post menopause, and I feel people on this board understand me more then doctors or my family members do.
sincerely:D
I was on birth control and it did increase my bone density. However it gave me a blood clot in my leg. Make sure that you get your liver values get monitered and if possible ask to be put on a blood thinner at the same time so that you don't develop blood clots.
Evista carries the same risks of blood clots and diminishes estrogen production in your body, biosophates create jaw problems, and cannot be take for more then five years.
As far as cancer risks monitor how you feel on the hormones. If you feel, breast tenderness, or increase of cysts you could always ask for evista.
Talk to a friend or family member about this so you could make a educted decision.
Most of all make sure that your not hyper thyroid, you calcium and vitamin d levels are ok.
Try to do weight bearing excercises at least minimum one hour a day.
I know this is hard for you. I am in the same boat as you. I am 32 and in post menopause, and I feel people on this board understand me more then doctors or my family members do.
sincerely:D
osteoblast
05-22-2008, 06:05 PM
Indersonu-Thanks for the information and kind thoughts. It is a difficult road we are on to try to rebuild bone. The options are all dicey. I diligently do my walking and weight lifting and some tai chi as well. Thank you for drawing attn. to the clotting issues, liver issues too, when I see the gyn next mo.-and she is supposed to be expert with menopausal women and hormone therapy, I will bring these things up.
DesertBloom-thank you. I am going to listen to the presentation over this weekend. Really looking forward to it. Maybe print it out as well. I really appreciate your mentioning this . P.S. -I spoke with my drs. office that did the hormone panel--I will pick up results on Fri. but asst. said the estrogen (i think,could have been estradiol well you probably know what it is) anyway, not even registered on the meter. And Fsh, very elevated. The pcp said this would be expected in post meno women-What do you think?? I think I need to get me some estrogen on board. I would love to hear what you have to say about these results.
later.
DesertBloom-thank you. I am going to listen to the presentation over this weekend. Really looking forward to it. Maybe print it out as well. I really appreciate your mentioning this . P.S. -I spoke with my drs. office that did the hormone panel--I will pick up results on Fri. but asst. said the estrogen (i think,could have been estradiol well you probably know what it is) anyway, not even registered on the meter. And Fsh, very elevated. The pcp said this would be expected in post meno women-What do you think?? I think I need to get me some estrogen on board. I would love to hear what you have to say about these results.
later.
DesertBloom
05-22-2008, 07:49 PM
Hi Osteo: <removed>
I felt so much better while I was on HRT, that I really hated to stop it. My bone doc, said I had to make a choice before the end of June, which could be; continue HRT (risk more cysts, heart probs, or clots) or use a bisphosphonate (no), or Evista which can't be taking in conjunction with HRT.
My estradiol was 8, and the gyno said that was severe estrogen deficiency-who knows.
I'm tired of monitoring all these cysts, but I guess I have no choice. I'll start Evista and if it causes bad hot flashes/night sweats, I'm not sure what I'll do, since I don't think I can handle anymore than I already have.
If you decide to go on HRT, it will be interesting to see how your NTx score changes. Since HRT is an antiresorptive it will lower your score, whether you are on Forteo or not. The rub with this is you want it to lower it if you *aren't* on Forteo and you wouldn't want it to if you are *on* Forteo. I'm having another brain slam with this.
The biggest problem is the lack of choices with osteo, and I'm going to ask about Dmab tomorrow, when I see her and find out if it is considered a bisphos like drug. She may not be up on it, since it's still in the pipeline.
HRT will help your bone situation, but you still have to weight the pros and cons. After listening to that presentation, it seems that the number of years past meno, is crucial in deciding if it is something to do for treating osteo, and also the amount of time you intend to stay on it, and your first generation familial cancer history. For instance I had an aunt who had breast cancer, so since she isn't considered first generation to me, then the link for cancer is low. I would have to have a mother, or a sister/grandmother with breast/ovarian cancer for it too put me in the high risk category.
Since you don't have the post meno symptoms I do, I don't know if you'll notice anything while on it (if you take it). Besides the pluses I mentioned in an earlier post, it also helped with concentration/memory.
Good Luck with all of this, and I'll let you know what the sestamibi scan showed if anything. My heart probs have been identified and the cardio feels they are a result of the hypercalcemia, family history, and stress.
:wave:
I felt so much better while I was on HRT, that I really hated to stop it. My bone doc, said I had to make a choice before the end of June, which could be; continue HRT (risk more cysts, heart probs, or clots) or use a bisphosphonate (no), or Evista which can't be taking in conjunction with HRT.
My estradiol was 8, and the gyno said that was severe estrogen deficiency-who knows.
I'm tired of monitoring all these cysts, but I guess I have no choice. I'll start Evista and if it causes bad hot flashes/night sweats, I'm not sure what I'll do, since I don't think I can handle anymore than I already have.
If you decide to go on HRT, it will be interesting to see how your NTx score changes. Since HRT is an antiresorptive it will lower your score, whether you are on Forteo or not. The rub with this is you want it to lower it if you *aren't* on Forteo and you wouldn't want it to if you are *on* Forteo. I'm having another brain slam with this.
The biggest problem is the lack of choices with osteo, and I'm going to ask about Dmab tomorrow, when I see her and find out if it is considered a bisphos like drug. She may not be up on it, since it's still in the pipeline.
HRT will help your bone situation, but you still have to weight the pros and cons. After listening to that presentation, it seems that the number of years past meno, is crucial in deciding if it is something to do for treating osteo, and also the amount of time you intend to stay on it, and your first generation familial cancer history. For instance I had an aunt who had breast cancer, so since she isn't considered first generation to me, then the link for cancer is low. I would have to have a mother, or a sister/grandmother with breast/ovarian cancer for it too put me in the high risk category.
Since you don't have the post meno symptoms I do, I don't know if you'll notice anything while on it (if you take it). Besides the pluses I mentioned in an earlier post, it also helped with concentration/memory.
Good Luck with all of this, and I'll let you know what the sestamibi scan showed if anything. My heart probs have been identified and the cardio feels they are a result of the hypercalcemia, family history, and stress.
:wave:
osteoblast
05-23-2008, 12:02 AM
DB-Sorry to hear that you have heart problems confirmed. About your cardiologist pinpointing hypercalcemia that is unfortunate. Tonight I expect to talk with the woman I know who has hypepara and will get the scoop from her on the sestamibi . And, pass on that info to you.So sorry to about stress taking its toll. I think we should do a thread on stress and have people air their thoughts/concerns etc,--I think I told you the UW bone spec. tested my 24 hr. cortisol level. She said stress can result in bone loss. When I lamented that the endo wanted me to use antianxiety med she said that may be best for the bones too. I am not using the antianxiety during the greater part of the day, just towards late day or during day if dr. appt.(my big stressor)
Looks like we are both off to the doc tomorrow-I get the mri for lumbar to see hemangioms, see rheum re sjogren's testing and other AI tests she did, then to ENT regarding possible thyroidectomy.Then a yummy dinner where I can forget the med stuff! I have to stack them in same day, because it is quite a drive. And, sounds like you will see the doc tomorrow. Let's convene and share later if you want.
ps-when I saw the UW expert, she wasn't so keen about my high ntx and thought forteo and hrt could be good for me. Well, I follow up with her early June and will see where this goes. <removed>
Looks like we are both off to the doc tomorrow-I get the mri for lumbar to see hemangioms, see rheum re sjogren's testing and other AI tests she did, then to ENT regarding possible thyroidectomy.Then a yummy dinner where I can forget the med stuff! I have to stack them in same day, because it is quite a drive. And, sounds like you will see the doc tomorrow. Let's convene and share later if you want.
ps-when I saw the UW expert, she wasn't so keen about my high ntx and thought forteo and hrt could be good for me. Well, I follow up with her early June and will see where this goes. <removed>
DesertBloom
05-24-2008, 04:31 PM
Hi Osteo: I hope your day was good... You have a lot to deal with, I'm glad you finally got a team of Drs that you like.
Let me know about the mri, I'm curious about that, and also all the other stuff (thyroid, hrt etc).
No need to post right away I think I may know how you're feeling.:angel:
Let me know about the mri, I'm curious about that, and also all the other stuff (thyroid, hrt etc).
No need to post right away I think I may know how you're feeling.:angel:
osteoblast
05-24-2008, 08:05 PM
DB- I am feeling OK.:)Let me know too about how you are doing and how your dr. appts. went when you feel like it.
My dh was with me for the day and that helped . I will know the mri results beginning of June and then bone plan will be reviewed,again . I hope no nasty surprises on mri. They actually ended up doing more than just lumbar -whole spine.MRI is a weird experience.The equip was very loud! . No contrast dye was used. ENT does not think I am now ready for thyroidectomy-I feel like I am. Will see endo in a few weeks and do new u/s and that may change things-or not.I feel stuck in gooey muck that I cannot get out of. I bet you know that feeling too. Rheum had blood results and postive ANA1:80,other tests negative . She ordered lip biopsy to complete the testing for sjogren's. It will be done by ENT in June under twilight anesthesia. Just wish I could get something behind me. Something resolved. I know that you and many others know what I mean. I guess with chronic conditions-you just learn to live with it. As one weird doc once said to me what is the option? Not very sympathetic.
<removed>
I remember once you said you were estrogen deficient-well with mine not registering I am way deficient.But really, isn't that how menopause is defined??Or , are there people out there with a reasonable amount of estrogen in their system throughout menopause? When you started you said your estrogen was at 7 , where did it get to with treatment? What are they looking for?
I hope you had a nice time with mil. Must be getting pretty hot in your area. Hope you can stay cool.
My dh was with me for the day and that helped . I will know the mri results beginning of June and then bone plan will be reviewed,again . I hope no nasty surprises on mri. They actually ended up doing more than just lumbar -whole spine.MRI is a weird experience.The equip was very loud! . No contrast dye was used. ENT does not think I am now ready for thyroidectomy-I feel like I am. Will see endo in a few weeks and do new u/s and that may change things-or not.I feel stuck in gooey muck that I cannot get out of. I bet you know that feeling too. Rheum had blood results and postive ANA1:80,other tests negative . She ordered lip biopsy to complete the testing for sjogren's. It will be done by ENT in June under twilight anesthesia. Just wish I could get something behind me. Something resolved. I know that you and many others know what I mean. I guess with chronic conditions-you just learn to live with it. As one weird doc once said to me what is the option? Not very sympathetic.
<removed>
I remember once you said you were estrogen deficient-well with mine not registering I am way deficient.But really, isn't that how menopause is defined??Or , are there people out there with a reasonable amount of estrogen in their system throughout menopause? When you started you said your estrogen was at 7 , where did it get to with treatment? What are they looking for?
I hope you had a nice time with mil. Must be getting pretty hot in your area. Hope you can stay cool.
DesertBloom
05-26-2008, 06:56 PM
Hi Osteo: I hope you are still hanging in... About you HRT question, at the conclusion of taking it I was at 56 from the 7 and 6 readings at the beginning. I was told that if you still have your ovaries, it is possible to produce some hormones, not the amount you did prior to meno but still an amount that would stave off the side effects, like hot flashes, night sweats, etc. I know a couple of people, my MIL included, who is 85 that still have a reasonable hormone level and *never* experienced the above but they do have the dryness/itching/pain of the uterus.
I'm not surprised that your Drs might consider this as a treatment, since you don't want to take bisphos's, and hormones will help your bones, I just don't understand how it works in conjunction to Forteo. My gyno says that HRT can be taken with Forteo and my Min Met Dr say's NO. As we've discussed before, she doesn't believe in taking a antiresorptive with an anabolic, and maybe she's completely wrong who knows:confused: I think the hormones will help with the stress you're going through because it did that for me. My dh said that I was much calmer and happier while on them, so maybe your Drs are taking this into consideration since you have problems that can feed off of, and get worse from stress (thyroid, AI, sjorgrens and osteo).
Most of the people I know taking hormones are the ones who had a total hysterectomy, and don't have osteo.
In any case I just hope so much that if you take this it will help.
On another topic, have you read anything about Dmab causing anaphylactic shock? Just wondered since my Dr mentioned this last week and I don't recall reading anything about that in the *precautions* *adverse side effect* for Dmab. The impression I got was that she and others feel that monoclonal antibodies are heavy duty drugs and you need to be careful with there use.
I'll be stopping Forteo at the end of this current pen, and starting Evista. I sure hope I don't have any trouble with the hot flashes they cause with some people or the blood clots. I also have a bleeding disorder (Von Willebrands) and have to be careful with any med that alters clotting mechanisms.
<removed>
Sorry, one last thing... When you hormone level doesn't register, like yours, do you get a 0 score on the test, or does it go into negative numbers? I've been wondering about this and can't find the answer anywhere.
Take Care:angel:
I'm not surprised that your Drs might consider this as a treatment, since you don't want to take bisphos's, and hormones will help your bones, I just don't understand how it works in conjunction to Forteo. My gyno says that HRT can be taken with Forteo and my Min Met Dr say's NO. As we've discussed before, she doesn't believe in taking a antiresorptive with an anabolic, and maybe she's completely wrong who knows:confused: I think the hormones will help with the stress you're going through because it did that for me. My dh said that I was much calmer and happier while on them, so maybe your Drs are taking this into consideration since you have problems that can feed off of, and get worse from stress (thyroid, AI, sjorgrens and osteo).
Most of the people I know taking hormones are the ones who had a total hysterectomy, and don't have osteo.
In any case I just hope so much that if you take this it will help.
On another topic, have you read anything about Dmab causing anaphylactic shock? Just wondered since my Dr mentioned this last week and I don't recall reading anything about that in the *precautions* *adverse side effect* for Dmab. The impression I got was that she and others feel that monoclonal antibodies are heavy duty drugs and you need to be careful with there use.
I'll be stopping Forteo at the end of this current pen, and starting Evista. I sure hope I don't have any trouble with the hot flashes they cause with some people or the blood clots. I also have a bleeding disorder (Von Willebrands) and have to be careful with any med that alters clotting mechanisms.
<removed>
Sorry, one last thing... When you hormone level doesn't register, like yours, do you get a 0 score on the test, or does it go into negative numbers? I've been wondering about this and can't find the answer anywhere.
Take Care:angel:
osteoblast
05-27-2008, 04:17 AM
DB-I am hoping that perhaps the spino med brace may help you. I have my fingers crossed that the price is ok and that you could find someone to properly fit it to you and get some pain relief and posture help.
Regarding walking poles after comparison shopping , I was more impressed with poles at the REI site. I believe they are Black Diamond . What I like about the poles is the manuf. specializes in making trekking/walking poles for heavy duty use, quality is tip top, and the poles looked cool. Not therapeutic looking . The reviews on the poles were outstanding , people raved about the sturdy nature of the mechanism which holds the poles at a certain height and good hand grips. You don't want a mechanism to give way, or be noisy-jostling around. They telescope down to I think 2 ft. AND you can then set them to EXACTLY the height you need. And, the price was comparable to the others -maybe less. They came in a cool cinammon color. I haven't implemented the pole plan yet, but I have found the poles I want. Also incredible return policy with REI-you have a problem, no problem is the way I understand it.The poles sound like they too could help relieve some stress on your back and strengthen your upper body. That would be great!
The bone expert said that in her opinion the hrt would be fine with forteo?? My mind was reeling. I suppose you could understand that!! And , I have alot of respect for your min met doc ! My pcp scripted the hrt. It is a progesterone patch used 2 times a week for a 3 mo. period then with a 10 day prometrium time, then back to the patch system. Apparently this is being done now. I chatted with someone at the meno board. Well she said she is mostly a kinda cranky person, and during the progesterone phase she is a mad woman. Ah-I hope I have your mellow reaction instead. But, I think your patch was a combination estradiol and progesterone.
Oh and the bone expert is saying a bisphos for a period after forteo, not too long but for some time.
After having been to several specialists, and finally ending up with my first choice specialist that I thought I could never get into-I am quite inclined to listen carefully to her .I am in a tight squeeze bone wise-with nothing to show for the forteo in my spine so far and some loss to show instead.
No, I didn't hear that about dmab-what I wonder about there is antibodies-,my AI system seems to be an antibody mine field. Didn't ask the doc-since all is up in the air. But will post if I learn anything about dmab risks.
Actually in looking at the report I didn't register a negative estro number it just indicated <20. And the FSH was 180-with a showing of 16-114 for post meno. I think my body is starved for estrogen. But, I really don't understand all this.I have aged dramatically over the past few yrs, skin, hair,cognition etc. never could figure out whether it had more to do with meno or hashimoto's thyroiditis-or combination.
I hope the Evista will be safe for you with your Von Willebrands, will they do special monitoring?
At this time, is your parathyroid issue being put to rest because of the results of the sestamibi? What do you think about what I told you about my friend with two sestamibi's showing nada and the u/s revealing the adenoma and , 2 questionable? Now it was not just any old u/s- because the radiologist is supposed to be the best available for parathyroids.
Our bodies are so complex and we have complex stuff going on. Just like so many , many others. But, we are quite fortunate to have available to us some excellent medical help! I hope that you are getting some help with pain/stress management. Did you ever look into whether your local hospital has a Kabat-Zinn wellness type program? They are all over the country. I have heard that they really can help with management of chronic pain and the relentless stress of some phys. conditions.
There really are some excellent people out there , smart, with beautiful hearts trying to help others cope with pain and fear. Medicine has come along way. I just finished a book written by Meredith Veira's husband Richard Cohen. It is called Blind Sided. He was diagnosed with MS when he was in his twenties. When diagnosed , there was no help offered to him whatsoever about coping-none. Just a brief phone call from his doc-I am sorry to say you have MS. And, that was it. Thank heavens that even in stodgy institutions there is now more sensitivity to the whole person . I actually didn't read the book but listened to it on cd. I really recommend it as a case study in trying to deal/cope with a devastating phys. diagnosis and how one man tried to get his life together with virtually no help in a time when having a serious medical diagnosis was looked at as a personal shortcoming-something to be hidden. I hope his book is required reading for many health professionals. I am not saying that I endorse the methods he developed for coping-but he tried the best he could at a time when professionals seemed to just see/treat the disease and not the person with the disease.
Later alligator!:)
Regarding walking poles after comparison shopping , I was more impressed with poles at the REI site. I believe they are Black Diamond . What I like about the poles is the manuf. specializes in making trekking/walking poles for heavy duty use, quality is tip top, and the poles looked cool. Not therapeutic looking . The reviews on the poles were outstanding , people raved about the sturdy nature of the mechanism which holds the poles at a certain height and good hand grips. You don't want a mechanism to give way, or be noisy-jostling around. They telescope down to I think 2 ft. AND you can then set them to EXACTLY the height you need. And, the price was comparable to the others -maybe less. They came in a cool cinammon color. I haven't implemented the pole plan yet, but I have found the poles I want. Also incredible return policy with REI-you have a problem, no problem is the way I understand it.The poles sound like they too could help relieve some stress on your back and strengthen your upper body. That would be great!
The bone expert said that in her opinion the hrt would be fine with forteo?? My mind was reeling. I suppose you could understand that!! And , I have alot of respect for your min met doc ! My pcp scripted the hrt. It is a progesterone patch used 2 times a week for a 3 mo. period then with a 10 day prometrium time, then back to the patch system. Apparently this is being done now. I chatted with someone at the meno board. Well she said she is mostly a kinda cranky person, and during the progesterone phase she is a mad woman. Ah-I hope I have your mellow reaction instead. But, I think your patch was a combination estradiol and progesterone.
Oh and the bone expert is saying a bisphos for a period after forteo, not too long but for some time.
After having been to several specialists, and finally ending up with my first choice specialist that I thought I could never get into-I am quite inclined to listen carefully to her .I am in a tight squeeze bone wise-with nothing to show for the forteo in my spine so far and some loss to show instead.
No, I didn't hear that about dmab-what I wonder about there is antibodies-,my AI system seems to be an antibody mine field. Didn't ask the doc-since all is up in the air. But will post if I learn anything about dmab risks.
Actually in looking at the report I didn't register a negative estro number it just indicated <20. And the FSH was 180-with a showing of 16-114 for post meno. I think my body is starved for estrogen. But, I really don't understand all this.I have aged dramatically over the past few yrs, skin, hair,cognition etc. never could figure out whether it had more to do with meno or hashimoto's thyroiditis-or combination.
I hope the Evista will be safe for you with your Von Willebrands, will they do special monitoring?
At this time, is your parathyroid issue being put to rest because of the results of the sestamibi? What do you think about what I told you about my friend with two sestamibi's showing nada and the u/s revealing the adenoma and , 2 questionable? Now it was not just any old u/s- because the radiologist is supposed to be the best available for parathyroids.
Our bodies are so complex and we have complex stuff going on. Just like so many , many others. But, we are quite fortunate to have available to us some excellent medical help! I hope that you are getting some help with pain/stress management. Did you ever look into whether your local hospital has a Kabat-Zinn wellness type program? They are all over the country. I have heard that they really can help with management of chronic pain and the relentless stress of some phys. conditions.
There really are some excellent people out there , smart, with beautiful hearts trying to help others cope with pain and fear. Medicine has come along way. I just finished a book written by Meredith Veira's husband Richard Cohen. It is called Blind Sided. He was diagnosed with MS when he was in his twenties. When diagnosed , there was no help offered to him whatsoever about coping-none. Just a brief phone call from his doc-I am sorry to say you have MS. And, that was it. Thank heavens that even in stodgy institutions there is now more sensitivity to the whole person . I actually didn't read the book but listened to it on cd. I really recommend it as a case study in trying to deal/cope with a devastating phys. diagnosis and how one man tried to get his life together with virtually no help in a time when having a serious medical diagnosis was looked at as a personal shortcoming-something to be hidden. I hope his book is required reading for many health professionals. I am not saying that I endorse the methods he developed for coping-but he tried the best he could at a time when professionals seemed to just see/treat the disease and not the person with the disease.
Later alligator!:)
Clerklady
05-28-2008, 02:01 PM
Osteo & DB,
Hi I have posted on this board and have gotten some awesome advice you all.
I have read throught your thread and have been given HRT for my bones and of course
meno symptoms. I was diagnosed by my PCP of having osteoprosis earlier in the year, sence then she requested me to go see a rhumy for what she thought mught be fibrom.
He ran some blood work and in the meantime I went to my OBGYN and she added some bloodwork, and also had a dexa scan to see for sure if I had osteoprosis. Well the results came and I am only osteopenia, and my harmones levels show that I am in the middle of meno at age 45. My OB suggested the combopatch with est. and proges. I can say that not only have my symptoms of meno have decreased my bone and muscle pain went away for the most part. My OB said that it would help keep my osteo under raps, not that it would build must bone back but it would keep me for getting worse. My rhumey wants to redo the dexa in a year and see where I am and also supplement calicum and vit D also. But in they also found that I have carpel tunnel and tendanitus in my shoulders and elbows. So therapy for that right now. My Ob told me that the risk of cancer and blood clots are low because of what DB says about the generation, she also for what it is worth said that fibroids may come and go while on HRT.
The main reason I post is I have a question about the brace you guys are talking about.
My mother has osteoporisis and RA and has 5 compression fractures in her middle back and three cracked ribs. She has undergone chemo and radiation for a tumor on her lung that is NSCLC. She is in very much pain, on pain medication and has had a very difficult battle the last 9 months wtih all the treatment. Right now the tumor is shrinking but she had a very hard time getting around. Would the brace you are talking about it be of help her to be able to get around without to much pain. She is 75 and currently weights 90#, on full time onxygen. She is very tired with no energy most days so she can't get around to walking and using her legs and lungs so they will improve. i fyo think it might help her with her pain level and her activity I would kiss you both. She used to be very active and not can't get out of bed to the recliner most days, she is slowly improving but she is getting very frustrated with it all. Please advise if you think I should look into it, I value you opinions, Thanks and God Bless, Denise
Hi I have posted on this board and have gotten some awesome advice you all.
I have read throught your thread and have been given HRT for my bones and of course
meno symptoms. I was diagnosed by my PCP of having osteoprosis earlier in the year, sence then she requested me to go see a rhumy for what she thought mught be fibrom.
He ran some blood work and in the meantime I went to my OBGYN and she added some bloodwork, and also had a dexa scan to see for sure if I had osteoprosis. Well the results came and I am only osteopenia, and my harmones levels show that I am in the middle of meno at age 45. My OB suggested the combopatch with est. and proges. I can say that not only have my symptoms of meno have decreased my bone and muscle pain went away for the most part. My OB said that it would help keep my osteo under raps, not that it would build must bone back but it would keep me for getting worse. My rhumey wants to redo the dexa in a year and see where I am and also supplement calicum and vit D also. But in they also found that I have carpel tunnel and tendanitus in my shoulders and elbows. So therapy for that right now. My Ob told me that the risk of cancer and blood clots are low because of what DB says about the generation, she also for what it is worth said that fibroids may come and go while on HRT.
The main reason I post is I have a question about the brace you guys are talking about.
My mother has osteoporisis and RA and has 5 compression fractures in her middle back and three cracked ribs. She has undergone chemo and radiation for a tumor on her lung that is NSCLC. She is in very much pain, on pain medication and has had a very difficult battle the last 9 months wtih all the treatment. Right now the tumor is shrinking but she had a very hard time getting around. Would the brace you are talking about it be of help her to be able to get around without to much pain. She is 75 and currently weights 90#, on full time onxygen. She is very tired with no energy most days so she can't get around to walking and using her legs and lungs so they will improve. i fyo think it might help her with her pain level and her activity I would kiss you both. She used to be very active and not can't get out of bed to the recliner most days, she is slowly improving but she is getting very frustrated with it all. Please advise if you think I should look into it, I value you opinions, Thanks and God Bless, Denise
osteoblast
05-28-2008, 03:41 PM
Denise -I really do hope that DB can step up with some thoughts on this because she is more versed in the brace and has talked to Sara Meeks about it. The brace is called SpinoMed brace.
Given all that your dear mom is going through, it would be wonderful to find some help and certainly you need to avoid anything that would be an aggravation. <removed> Stay at this, it is worth pursuing to see if perhaps it could help your mother.Maybe if it is found to not be right, the pursuing of this may lead you to what will be right. Good luck and just keep trying!
Given all that your dear mom is going through, it would be wonderful to find some help and certainly you need to avoid anything that would be an aggravation. <removed> Stay at this, it is worth pursuing to see if perhaps it could help your mother.Maybe if it is found to not be right, the pursuing of this may lead you to what will be right. Good luck and just keep trying!
mod-anon
05-28-2008, 05:00 PM
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