POZ Community Forums
Off Topic Forums => Off Topic Forum => Topic started by: wolfter on May 29, 2013, 06:36:50 pm
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Well I wasn't too shocked at my dexa results, just that they came back so low. The pelvis and femur area came back at 1.2 but my spine area came back at 1.1
At least there are a few options. One is going to the infusion clinic once a month for several hours being iv'd the treatment. Think I've ruled that out as I was stir crazy when I spent 22 days in a row receiving 8 hour infusions to kill the crypto.
There are a few pills that I can also take and I told him to just pick one. My daily pill intake indicates that a few more won't make a difference.
This doesn't address the falling issues and jelly leg, but I can try to lessen the damage when it happens again. I've taken to standing on just my left leg when fist standing up. I've noticed that my right leg is shaking uncontrolably for a few moments and I have no feeling in it for a while.
Wolfie
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Wolfmeister,
I'm sorry to hear that your bone scan results came back so low. This seems to confirm a lot of the symptoms you've been having. But, does it explain all of them? What about that numbness and shaking in your right leg? I'm certainly not a doctor, but I wonder if there might be something else going on. May be time for some more "straight talk" with your doctor.
Hang in there...
Henry
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Are your scores +1.1 and +1.2 if so those are good scores and shows normal bone density. Scores of -1.1 and -1.2 are only slightly lower than normal and show mild osteopenia. These are not that bad.
Here is a simple guide to reading Dexa scan results
http://www.ehow.com/how-does_4855832_understanding-dexa-scan-results.html
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After reading the links provided as my first means of learning, I've discovered my brain might be loosing density too. :o I called my doctor's office because the results aren't on Webview yet.
I only like to deal with 2 staff members there other than my doctor. Tracy and Heather are goddesses. So Heather was out of the office so I asked for nurse Tracy. This other receptionist said that nurses don't take calls from patients. I informed to yell around the corner and tell her Greg wanted to speak to her. Quickly resolved as Tracy came on the line.
Even as an agnostic, I'll say God Bless her because she tried to explain the different numbers. The ones I cited are apparently variances. She was so patient and she asked if she could drop of copy of the results in the mail. Guarantee that she did so immediately. I saw my doctor for a different issue and he just happened to have rec'd the results that morning. He gave me a general overview which obviously didn't stick in my short term memory.
I should receive it tomorrow and start studying.
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Here are the actual results as I see them instead of trying to remember them. :o
It's interesting that my doctor indicates they are starting to see a lot of LTS with these same issues. He has one colleague who performs these tests on most of his patients with a large number showing similar results.
Now, time to start the actual research on the course of treatment.
(http://i940.photobucket.com/albums/ad246/wolfter/Scan_Pic00032_zps5f6ef76a.jpg)
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I'm almost overwhelmed at all the options available. Perhaps I need to move this over to the LTS as it's probably not a issue for newly infected?
Was hoping to read others' experiences before discussing the options with my doctor in person.
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I'm wishing you the best Wolfe and I hope for updates so I can learn a little more about what you are dealing with as its outside of anything I have experienced .
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Thanks Jeff. I'll know more when I actually sit down and discuss some of the options with the doc. I'm thinking I really need to get this going pretty quickly as I think I've suffered yet another issue.
A simple bike ride last week has left me with a horrible pain on my tail bone. I hit a huge pot hole and bounced on the seat. Not sure if it's just bruised on a another fracture, but I need to strengthen these old bones.
Guess it's time to really address the smoking issue as it's a known cause. I guess I've used the crutch of claiming smoking as a diet aide long enough.
I couldn't find any known interactions with the different treatments and the HIV drugs, but my doctor is also researching it. He admits that he hasn't had a lot of experience with this particular issue.
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Although we can never be certain, there are a couple of suggestions as to what caused this bone loss. I wish I would have had these tests early on to be sure. Truvada obviously can lead to bone loss but many LTS might have suffered other issues that started the bone loss issue sooner.
I had never heard of the term "medical anorexia". Commonly referred to as wasting, but with the same results. The primary difference between the 2 is that anorexia is more phsychologically based, where as anorexia due to to illnesses is a physical condition.
My doctor has indicated he plans on ordering these tests for all his patients in order to have a baseline and be able to monitor it.
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It isn't only Truvada (http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/default.asp) that has been shown to increase the risk of having Osteoporosis.
Risk factors for developing osteoporosis include:
thinness or small frame
being postmenopausal and particularly having had early menopause
abnormal absence of menstrual periods (amenorrhea)
prolonged use of certain medications, such as those used to treat lupus, asthma, thyroid deficiencies, and seizures
low calcium intake
lack of physical activity
smoking
excessive alcohol intake.
source (http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/default.asp)
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I've also been told that Medicare will only pay for a dexascan if you've already gotten low vitamin D levels on a blood test. If you just want it as a baseline record it will not be authorized. Not sure if this is the case but it's what I was told a few years ago and it's why I've not had one done yet.
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A simple bike ride last week has left me with a horrible pain on my tail bone. I hit a huge pot hole and bounced on the seat. Not sure if it's just bruised on a another fracture, but I need to strengthen these old bones.
Hey Wolfie,
I'm sorry you are having such problems, but I may be able to help you stop rattling your spine when you ride your bike. Go to a decent bike store and look at the new seats they offer. They have double-split seats, which means that both the front and back of the seat have v-shaped spaces, where normal saddles would be solid. The advantage of this, for your rear end, is that your tail-bone is suspended by the seat, but there is nothing directly beneath it to hit it on, when you strike an object. The same goes for the front part, which will avoid you neutering yourself as well, as you no longer have the hard nose pressing against your scrotum.
They cost about the same as a decent saddle, but for dinosaurs like us, they make riding a lot smoother.
Joe
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It isn't only Truda (http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/default.asp) that has been shown to increase the risk of having Osteoporosis.
Risk factors for developing osteoporosis include:
thinness or small frame
being postmenopausal and particularly having had early menopause
abnormal absence of menstrual periods ()
prolonged use of certain medications, such as those used to treat lupus, asthma, thyroid deficiencies, and seizures
low calcium intake
lack of physical activity
smoking
excessive alcohol intake.
source (http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/default.asp)
I'm too young for menopause. :)
That being said, the doctor feels (as we will never know for sure) that because of my age, it's more likely one of the 2 issues I cited. Men don't typically have this much bone loss at such an early age.
I've also been told that Medicare will only pay for a dexascan if you've already gotten low vitamin D levels on a blood test. If you just want it as a baseline record it will not be authorized. Not sure if this is the case but it's what I was told a few years ago and it's why I've not had one done yet.
I've not had a vitamin D test done yet, it's scheduled with my next labs. It's my understanding that if a doctor deems it medically necessary, then they'll cover it. I guess my easy fractures was enough cause for him to order the test. I've been on Vitamin D and Calcium supplements for over 6 months and it hasn't helped. Hey Wolfie,
I'm sorry you are having such problems, but I may be able to help you stop rattling your spine when you ride your bike. Go to a decent bike store and look at the new seats they offer. They have double-split seats, which means that both the front and back of the seat have v-shaped spaces, where normal saddles would be solid. The advantage of this, for your rear end, is that your tail-bone is suspended by the seat, but there is nothing directly beneath it to hit it on, when you strike an object. The same goes for the front part, which will avoid you neutering yourself as well, as you no longer have the hard nose pressing against your scrotum.
They cost about the same as a decent saddle, but for dinosaurs like us, they make riding a lot smoother.
Joe
I've been looking online, and there sure are a lot of options. Even without my current issues, my bony ass would probably appreciate a more comfortable seat. My 18 speed has a regular/traditional seat whereas my cruiser bike has a larger one already that is super padded.
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I'm too young for menopause. :)
That being said, the doctor feels (as we will never know for sure) that because of my age, it's more likely one of the 2 issues I cited. Men don't typically have this much bone loss at such an early age.
You're never too young for a bit of men-o-pause. ;D I left that bit of the site's information in my post because women will be reading this thread too.
Smoking and alcohol intake can have a very big impact on bone density as we age. My partner's doctor has him on a host of supplements and he asked me (a few years ago) why he was on them. (He doesn't talk to his doctor much, but that's another subject.)
So I researched them and discovered they were all to protect him against bone density loss issues - for the simple fact that he drinks a fair amount of alcohol. Certainly far more than the weekly recommended intake and going by some of your own admissions in these forums, so do you. Food for thought?
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So I researched them and discovered they were all to protect him against bone density loss issues - for the simple fact that he drinks a fair amount of alcohol. Certainly far more than the weekly recommended intake and going by some of your own admissions in these forums, so do you. Food for thought?
I've been doing endless research and it's quite frightening to think a large percentage of us LTS suffer these issues younger than the general population. Were I not a generally clumsy person, I wouldn't be aware of it. Since my issues started so young in life, my doctor doesn't feel lifestyle factors are in play. He already admonishes me about smoking anyways, so that is a short term goal.
And I suppose if alcohol was really the culprit, I'd reduce down to one bottle a week instead of 2. I already mix my wine with cranberry juice so I can consider it a healthy alternative to soda pop. ;D
I have also found several conflicting studies (few have been done) on whether having this virus long term in itself can destroy bone mass. There are many options available for treatment; some prevent further bone loss while others actually build bone. Most of the result studies have been performed on postmenopausal women.
At this point, I've decided to wait til I actually sit down with my doctor. At least I'm coming to the table with the appropriate questions and a basic understanding.
Thanks.
Wolfie
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Wolfie,
Good luck with this - I think your plan makes sense. Know the questions you want to ask and work with the doc. I am happy that you have an answer anyway. You're odyssey with your leg certainly took its toll on you.
I am having my own scan next week. I've had 3 fractures in under 2 yrs, with only 1 in the preceding 47 years. My doc thinks it is prudent to do - even if it comes back normal, we will have a baseline.
Can't wait to see you in Chicago....
Hugs,
Mike
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I have osteoporosis bad and hit it five ways:
1) switched truvada to epzicom
2) calcium supplement
3) major vit d supplementation to get back over 30
4) strontium supplementation (look it up on osteo sites)
5) fosomax biophosphenate
I am 51. After one year my density had increased 7% but still was in danger zone. I am overdue for annual DEXA which I'll get next week, and I don't know hiw to explain it but I feel much better, less "frail" or "creaky" so i am hopeful now i am out of at least osteoporosis range. I am 10yrs pos, 8 on meds, so hopeful you can also see improvements.
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Wolfie,
Good luck with this - I think your plan makes sense. Know the questions you want to ask and work with the doc. I am happy that you have an answer anyway. You're odyssey with your leg certainly took its toll on you.
I am having my own scan next week. I've had 3 fractures in under 2 yrs, with only 1 in the preceding 47 years. My doc thinks it is prudent to do - even if it comes back normal, we will have a baseline.
Can't wait to see you in Chicago....
Hugs,
Mike
Thanks, I hope your results return normal. My doctor readily admits that he doesn't have the greatest knowledge and expertise in treating this condition and is doing additional research. We agreed that an extra month or so to start treatment would be worth it for him address it with colleagues.
Definitely looking forward to Chicago too, my goal is to not be limping by then. There's absolutely no pain remaining and I can walk for miles with no issues except this damned limp. Supposedly, it'll lessen over time. I've been walking crutch free for over 4 months already!!!!
My legs look so strange. The broken one looks pencil thin because of not using it for months and the other one has turned into a huge muscle mass. I don't like either one. Am considering using crutches to balance them out. ;D
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I have osteoporosis bad and hit it five ways:
1) switched truvada to epzicom
2) calcium supplement
3) major vit d supplementation to get back over 30
4) strontium supplementation (look it up on osteo sites)
5) fosomax biophosphenate
I am 51. After one year my density had increased 7% but still was in danger zone. I am overdue for annual DEXA which I'll get next week, and I don't know hiw to explain it but I feel much better, less "frail" or "creaky" so i am hopeful now i am out of at least osteoporosis range. I am 10yrs pos, 8 on meds, so hopeful you can also see improvements.
I've checked out Fosomax along with several of the others. I don't believe I can switch out the Truvada. The last discussion (over a year ago) with my doctor was that due to resistance issues, there were no other options available.
For me, the bone loss was a silent occurence. I never felt frail or weak and continued on with regular activities. The only indication was that my bones started snapping fairly easily. ;D
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I have osteoporosis bad and hit it five ways:
1) switched truvada to epzicom
2) calcium supplement
3) major vit d supplementation to get back over 30
4) strontium supplementation (look it up on osteo sites)
5) fosomax biophosphenate
Thanks for that info!
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Well, a strange turn of events happened. My sister-in-law is a pharmacy tech in the next town over. I always have my prescriptions filled there as she drops them off to me....nothing better than front door service. ;D
She dropped off a prescription that my doctor called in. It is for Boniva. I'm kinda taken aback by this turn of events as I thought we were going to review/discuss the different options. I'll go ahead and start this treatment, but I'll definitely share my displeasure at not being involved in the decision making process.
At least this is only a once per month pill. Not sure how long someone has to take them, but I can't imagine taking a pill a month for the rest of my life. ::)
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Well, a strange turn of events happened. My sister-in-law is a pharmacy tech in the next town over. I always have my prescriptions filled there as she drops them off to me....nothing better than front door service. ;D
She dropped off a prescription that my doctor called in. It is for Boniva. I'm kinda taken aback by this turn of events as I thought we were going to review/discuss the different options. I'll go ahead and start this treatment, but I'll definitely share my displeasure at not being involved in the decision making process.
At least this is only a once per month pill. Not sure how long someone has to take them, but I can't imagine taking a pill a month for the rest of my life. ::)
Boniva. Isn't that what Sally Fields is selling?
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Boniva. Isn't that what Sally Fields is selling?
Yup
http://www.youtube.com/watch?v=KryR45XM7vs&sns=em
http://www.consumerreports.org/cro/video-hub/health/adwatch/cr-adwatch-boniva/16601916001/21173416001/
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but I can't imagine taking a pill a month for the rest of my life. ::)
ROFLMAO ;D
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Not sure if I provided any updates with the Boniva. My doctor indicates that I won't have another scan for at least a year. This treatment actually causes further bone loss until it starts building bone strength. I'm too young to be this damn frail. :)
I'm a few days late taking my monthly treatment as I had a busy week. I absolutely know what to expect for 2 days after taking it. I can't be too far away from the throne. It's like a temporary return to the late 80's.
Wolfie
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Nought to add drug wise but wishing you the best.
I have introduced a walking Pole into my forays round London town and that has cut down on my falls , also provides visual signal to others and very handy weapon.
Cannot praise them enough. Plus the walking pole does not add to my list off decrepitude's , which pleases even if it is just mind play .
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Do you mean a cane? Or a real trekking pole like they use in sports/hiking?
I'd like to find an Alexander McQueen walking "skull" cane. (http://www.luisaviaroma.com/index.aspx?#ItemSrv.ashx|SeasonId=59I&CollectionId=A9V&ItemId=10&VendorColorId=MTAwMA==&SeasonMemoCode=actual&GenderMemoCode=men&Language=&CountryId=&SubLineMemoCode=accessories&CategoryId=137&ItemResponse=&MenuResponse=&SizeChart=false&ItemTag=true&NoContext=false)
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I had my Boniva refilled yesterday. I get a 3 supply at a time. I noticed something written differently on the package this time. In large letters, it read; This medication MUST be taken with 8oz of water. That is so different than before. It always indicated that it must be taken on an empty stomach and that it was ok to take small sips of water if needed to take other meds.
4 hours later, and I haven't experienced the horrible affects that I've become accustomed to. I've not had to hit the throne yet. Every other time, the first day was an immediate and constant trip to the toilet.
I wonder if they did additional research and have changed the guidelines?
greg
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That's great news Greg. I remember you having to deal with that with every dose.
I just hate when some meds try to pretend they are exlax.
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It was great news Mark until I decided to push my luck. I hadn't had a cocktail for a week and decided a few glasses of zin when some friends stopped by. Luckily, they were gone before my incident. :) I really could have made it to the restroom on time if I wasn't on these damn crutches.