Happy New Year to you all and may it be a great one.
I recently had a Dexa Scan and result is minor of Osteoporosis I guess that would be Osteopenia. Suggestion is by my GP to take Alendronic Acid, which after reading information about it raised many questions. Can i take it or there is more kinder medicine for this, or are they any natural way to help with this condition, such as I already take Vit D3 4000 IU two sprays, (8000) daily. If this dosage is not good can you suggest what I should take. I am considering to take calcium and if you could suggest dosage and a very good one (brand). Did anyone had this experience, medicine for it and how did that went?
I have contacted my MPN team and waiting for replay.
Please advise.
Wishing you well.
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light
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hi Light, happy new year to you as well. I am sorry that you have osteoporosis, not very nice for you.
You really do need to ask your doctor about what you can take for it, and also for advice on dosage of Vitamin D and whether or not you should take calcium.
Advice about this cannot be given by members of this forum, advice of this kind has to be given by a medical professional.
Hi Maz, thank you for your answer. However I do not have Osteoporosis/ very mild which I think it is Osteopenia . The person who told me that, was GP's pharmacist. I already requested all information from MPN team and was told to ask for alternative medication. I only actually wanted to know about as to what supplements I should take not medical advise from MPN family.
Hi and Happy new year! I have osteopenia as well and am prescribed Raloxifine 60 mg daily for years. I have no side effects whatsoever. It is doing the job and is is not progressing to osteoporosis. I am 71. I hope this helps!
Sorry to hear about the possible osteopenia/osteoporosis. Having another condition to manage beyond the MPN as well as a whole different array to treatments to consider is an unwelcome challenge.
Suggest that you take the time to review all of your treatment options for the "mild osteoporosis." There are very good resources to start on your own, such as the Mayo Clinic mayoclinic.org/diseases-con... and the NHS nhsinform.scot/illnesses-an... .
The treatment options can be compared in terms of your treatment goals, risk tolerance, and treatment preference. None of us could advise you about what is best in your case. None of us would know which of the options is "kinder" in your situation That is a decision that you need to make based on your priorities. This is a decision to share with the care team who knows your case. You were wise to seek input from your MPN care team. They can best advise about any potential interactions and impact on the MPN.
While you may be advised to take Vit D and/or calcium, this is something you will need to check with a medical professional about. Your osteo-care team will likely provide the best advise about this. You are wise to consider the source of any supplements. Supplements are not as well regulated and some forumations are worthless. You may also wish to consult with an Integrative or Functional Medicine Specialist. These doctors can review complementary health approaches should you wish to pursue those options.
I was diagnosed with osteopenia awhile ago and it was recommended that I take 600 mg of Calcium and Vit D3 (I don't recall the dosage) to help with the absorption of the calcium. Calcium is absorbed better when obtained through food rather than pills and with exercise, and vit. D3 is absorbed better when gotten from the sun - though if you are on hydroxyurea that is not recommended.
I am surprised that Alendronic Acid is being recommended for osteopenia, but if you are very close to the mark for osteoporosis, or young to have osteopenia, it may be a reasonable solution.
On average, max. bone density is usually gained by age 35 and after that the density slowly decreases as we age. Bone density is developed not only with calcium, but by weight bearing exercise ie: walking or running, as well. Exercise shifts more calcium to the bone that would otherwise be left to float about the blood stream being used for other necessities for good health. After 35, bone gradually loses its density and though exercise and supplements can slow the loss it is unlikely to reverse (sad to say).
So in our case exercise is also important to increasing the calcium (for older adults the current recommendation is 800 mg, but I don't see a definition for 'older adult') and vit D3.
And as is usually the case - any drastic change in exercise should be okayed first by your physician
Hi from a fellow osteopenia and ET victim. I was diagnosed with osteopenia about 12 years ago and ET 3 years ago. No bone density related fractures but I noticed I had lost some height and my mum had osteoporosis so off I went to see my GP. Got referred to osteoporosis clinic, had dexa scan and so the diagnosis. Advised me to take calcium and vit D, I asked why and was told it was advisable. I asked very politely if they could test my vit D and calcium levels which they did (reluctantly). The results were very good so would not need supplements. Nothing else was done or explained but I would be reviewed in 2 years for another scan. Did a bit of reading and found a forum called Team Inspire (osteoporosis section), educated myself from this then took myself to the local leisure centre gym, explained my position, they set me a programme which involved resistance training. 18 months later another dexa scan, bone density had moved into normal range in some areas but not my spine. At this point alendronic acid was offered which I turned down so was promptly discharged from their service with the parting shot of 'good luck, we hope you don't fracture'. I have always been active (I am now 65 years old) and had some pretty brutal falls from horses and bicycles with some fractures but high impact related. Generally small petite women have low bone density compared to 'normal population' and never actually reached the peak bone mass that is used as a measure in the dexa world, this is discussed in Team Inspire. My mother in law had dreadful osteoporosis, her spine crumbled and she had numerous fractures. Her GP never referred her to a specialist but just continued prescribing calcium when she did eventually end up in hospital with a hip fracture she was seen by an endocrinologist. This specialist discovered a problem with her parathyroid gland which is responsible for facilitating the transfer of calcium form the blood to the bones, a simple operation would have put it right. As it was, the endless calcium the GP prescribed just sat in her blood stream (dangerous). So make sure you have calcium and vitD checked, educate yourself, go to the gym (I do weights three times a week), and lots of weight bearing exercise if you are able. I take vitD all year around now due to taking hydroxycarbomide which means I have to use sun screen to protect from skin cancer hence blocking vit D absorption. Check out Team Inspire, it's a very good forum. Good luck
Thank you so much this is rather inspiring. I will contact Team Inspire and find resistance training. I am also very active and do water aerobics twice a week and been taking vitamins D3 for years. I am like you ET with Jack 2+ patient for 11 years and for last 9 years I been on Interferon Alpha 2 different dosages but now since we come out of lock down I been on 45mc every four weeks. Wishing you well.
So sorry about your low bone density. I am 72 years old ET Jak 2positive. I discovered that I had low bone density at least 30 years ago even though I do weights and hike.
Because I am sensitive to medications dI have chosen not to take the bone density medications, but I am taking a natural product from standard process called Calcifood. This was recommended by my naturopath, and I do feel that it is helping, although I will not know until my next bone density scan.
my doctor also recommended algaecal, which is also a natural treatment.
these are things that you can look into and discuss with your team if they interest you.
I also had osteopenia which eventually evolved to osteoporosis. I increased my Vit D and calcium supplements in addition to weight bearing exercises. Just a word of caution - calcium can cause kidney stones so you need to be careful. It didn't happen to me but you should be aware of this being a possibility.
The outcome is even with Vit D & calcium supplementation + weight bearing exercises I still progressed to osteoporosis & am being treated with medication for it. I don't really think you can stop the progression, maybe if you're lucky you can just slow it down.
I have ET and osteoporosis. I’ve taken Alendronate 35mg/weekly for 4 years with no side effects, and it has worked to steadily improve my bone density so that now I’ve moved out if osteoporosis and into osteopenia. I anticipate coming off it after my next DEXA scan. I do weight bearing exercises 3x week. I take D year round. My understanding is that calcium is better absorbed/utilized when you take it as food rather than pills. My doctor does not recommend calcium pills, but suggests to evaluate your calcium intake at the end of the day, and if its been low, take a Tums with a snack. Calcium is better absorbed if taken with food.
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