Hi all,
I have been on 500mg of hydroxyurea for 5 years and just been told that I’m at high risk for fractures because of a big change in my osteoporosis due to the Hydroxyurea. My doctor wants me to have injections of Prolia but the side effects are bad with that. I’m really worried about having the injections! Isn’t there something else to use?? Does anyone else have this issue?
Thanks,
Ann16
Hi Ann,I was diagnosed with osteoporosis this year but was well on my way to this before being diagnosed with ET and going on Hydroxyurea. I was diagnosed with osteopenia (the precurser) years before. This year my doctor prescribed Alendronate which is a pill taken once a week. There is another pill available that you can take once a month but I don't recall the name but my insurer wouldn't approve. My insurer would only approve the Alendronate at this time. As I understand it, you have to try this first and move to other options if it isn't effective. I don't know if this rule applies to all insurance.
I know several women who take the shot and have never heard them complain of issues.
Hi Ann, I took a once weekly Alendronic Acid tablet for a couple of years but unsure how effective it was. My GP at the time felt the same after i had a bone density scan and referred me to the local hospital Rheumatology dept. As a result in the past year I have had 2 Denosumab (Prolia?) Injections with no ill effects, however I was advised to have any necessary dental work done first. I believe it can affect the jaw bone. I also take a daily Calcium tablet combined with Vit D.
The 6 monthly injections apparently take at least a couple of years to start strengthening the bones but can eventually slow down, halt and perhaps even reverse the Osteoporosis. Don't quote me but that's what I've been led to believe which for me balanced the risk and helped my decision to give it a go.
I would recommend asking if it's OK to take Calcium tablets as a simple starter but it's worth discussing the injections with a qualified medical person or a Rheumatologist.
Good luck - Chris
Thanks for the info, much appreciated! I’m really worried about the Prolia affecting the jaw bone. I see my oncologist on the 21st and will go over options with him. He’s very difficult to understand so my daughter is going with me to help. Hope you’re doing ok and that the injections continue to help you. Thanks again
Ann16
Good luck with that I hope you get some sound advice , maybe your Haematologist will refer you to somebody better placed to help. Everything I've had this past 15 years has carried risk some things more than others but I experienced my spine compressing at several vertebrae with the onset of Osteoporosis and it's excruciatingly painful. Im happy to take my chances with the injections if it means stabilising the condition.
I'm pleased you have your daughter along for support.
Chris
Thanks for the support! Happy that it’s helping you, sounds like it has helped a lot with your pain. Take care, hope you have someone for support!Ann16
I'd be wary of calcium tablets if not taking vit k2 alongside. Jo
Thanks Jortcalr for flagging that up I was unaware of it and no mention has been made by anyone I've seen. I see it helps to direct calcium to bones away from depositing in soft tissue which can lead to problems over time. I don't see why they aren't given together as it would make good sense to maximise the calcium absorption to where it's most needed.
Regards - Chris
Hi Joetcair,Thanks for that info. I wouldn’t have known to take vit k2 with calcium. Take care,
Ann16
I have always been told to avoid Vit. K because it increases risk of blood clots.
Hi Ann I have been having prolia injections for a couple of years now for osteoporosis with no ill effects so far. I am not able to take alondronic acid due to tummy problems. I was on HU for 12 years but have recently changed to interferon I had both injections a couple of week ago on consecutive days and felt a bit unwell for a day or 2. When I was on HU I had no reactions As Jedi said nothing is without risk so I suppose the answer is to talk to your medical teams and weigh up the risks Hope that helps Margo
Hello Anne Hydroxycarbamide can produce many side effects so the signs of osteoporosis may be unrelated. I am here because I have ET but my wife is normal (!). About 15 years ago following breast cancer she was given a bone scan and prescribed Alendronic Acid because of some signs of OP - she took this for 6 years and since has taken Adcal (Calcium+ D3) . After a recent fall and arm break she was given another scan and there was NO CHANGE to the OP, but because of her age is back on the Alendronic Acid. So for what its worth - keep taking the tablets and remember that "Age Does Not Come Alone" !!
Hi quanglewangle, wow I’m so sorry, you two have been through a lot! You are so right about age not coming alone. My husband and I always joke about where are the golden years. Thanks for the info now I just have to talk to my doctor and decide what to do regarding my osteoporosis. Thanks again,
Ann16
Hi Ann, I have been on 1000 mg of Hydroxy for 6 years.
I had a bone density scan 3 years ago and I was borderline Osteoperosis. I was told to have another scan 5 years later but my joint pain was so bad and I had broken 2 ribs from just bending over, that I asked if the second scan was brought forward. I was referred 3 years after the first and the results were alarming. There was a marked decrease in my bone density (30%) since my scan 3 years previously and it stated that treatment needed to start. Strangely there was a statement which read “There is a marked increase in bone density on the right hip which should be investigated”. This raised alarms with me as I have had breast cancer so the thought of secondary cancer in the bone immediately popped in to my head. It also stated that I should be given a tablet once a week, I think it was Aleronic Acid but when I read the side affects it can cause major gastric problems and shouldn’t be given to people who have had cancer! I have had a gastric bypass so there was no way I was going to take it.
I have just moved area and my medical notes haven’t arrived to my new GP but he was talking about giving me the injection instead. What side effects were you experiencing?
I had to have an MRI scan on a damaged knee and the scan confirmed the osteoperosis. It’s a horrid, painful condition. I consider myself still quite young at 60 but the effects of Hydroxy have affected me very badly.
Hi, I’m so sorry to hear of all that you’ve been through! My side effects from Hydroxyurea haven’t been too bad, has helped more than hurt. I’m concerned about the injection of Prolia which I haven’t started yet. Thanks so much for replying to me! I hope your health improves!Ann16
Hi does peg carry the same risk if not is it worth asking to change?
I have not heard of HU causing osteoporosis. The only reference in the literature I found cited 0.43% of people on HU with osteoporosis. Please let us know what evidence there is to indicate that the loss of bone density is HU-related (as opposed to age/gender). ehealthme.com/ds/hydroxyure...
Regarding treatment options, of course there is more than Prolia. Suggest you insist on reviewing all of your treatment options, then weigh the benefits/risks of each choice. Ultimately it is your informed treatment preferences that should drive this decision.
Do please let us know what you learn.
Hi hunter5582, from what I have read hydroxy does cause bone loss. I’ll be discussing my options with my oncologist soon. I have been on Hydroxy for 5years and have seen a significant loss in my bone density scan. Thanks,
Ann16
HI, I was told by my consultants that Hydroxycarbomide will affect my bone density over time and 'not in a good way', he advised me to arrange Dexa scans from time to time via my GP. My bone density is already quite low, I am in the osteopenia range so just border line at the moment. Women are more susceptible than men to osteoporosis particularly post menopause so many of us here will present with low bone density before we even factor in the effect of hydroxycarbomide. It seems that doctors routinely prescribe calcium and vit D when low bone density is identified without even checking that these are deplete in the individual. My mother in law had dreadful osteoporosis and her GP dished out the calcium for many years but did not bother to check if it was getting to where it needed to be. It was not until she was hospitalised for yet another fracture when the Endocrinologist picked up her case and solved the problem. The calcium being taken was floating around in her blood stream unable to pass into her bones because there was a problem with her parathyroid gland which would have been corrected with a simple operation and the fractures would have stopped. I wish doctors would refer to the appropriate specialist so that we all stand a good chance of leading a healthy life . We must be careful not to blame everything we get on the effects of the blood condition we have and the drugs we are prescribed because when this happens I feel we do not get the opportunity to be referred to the appropriate specialist. The other thing is hydroxy is a gastric irritant and some of the osteoporosis drugs cause the same problem so what do they prescribe ....Omeprazole to neutralise the effects and guess what, Omeprazole is a bone thinner !!! So the moral of the story is to stay vigilant and research your drugs before deciding what's best for you. Good luck
Hi I get infusions of Reclast to strengthen my bone loss. You can ask about that. Katie
Hi, Earlier this year I was diagnosed with early onset of Osteoporosis. The Rheumatologist isn't sure of any connections with my MPN but will keep investing. I have PV and taking Hydroxyreau and Asprin for 8 years At time diagnoses, when they performed a bmb they said how strong my hip bone was . I'm also a petite person which doesn't help whe ut comes to bones. Smaller bones less density to loose.Health Unlocked also have a forum for Osteoporosis and offer great support. X
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