Questions about taking Alendronate (Fosomax) and hydroxyeurea

[Skater69]

I have Et with Jak 2. I was diagnosed last year when my platelets were around 600. After having a physical and a bone scan my gp just recommended taking alendronate for osteopenia. I walk 3 miles a day and work out. I have concerns about doing this especially with taking hydroxy. I have a friend whose femur fractured after using Fosomax. I have not consulted with my mpn specialist yet about the recommendation. I am happy with my platelets as they are now around 388. Please let me know if you have been taking any medications for osteopenia. I am 71 years old and when I look at the results it looks as though I am not far off from the average bone density for my age. He said they were not as good as 2018, but that was 5 years ago.

[Rem31]

I’ve been taking hydroxycarbamide for almost 10 years. I had little by way of risk factors for osteoporosis until last year when I fractured a wrist bone and it led to an unexpected osteoporosis diagnosis. I now also take a weekly biphosphonate tablet (alendronic acid) with no bother and I would have gladly taken it at the earlier osteopenia stage had I been aware of the condition and that I was at risk of osteoporosis. The specialist MPN team treating my ET have no problem with me taking it.

There’s a lot of information on the (UK) NHS and Royal Osteoporosis Society websites which I have found useful.

Hope that helps a little!

[Skater69 in reply to Rem31]

Thanks for your reply and infornation.

[Janis12]

Hi, I have ET and take hydroxy and clopidigral . I am 64 years old and was diagnosed with osteopenia about 12 years ago, initially they did not recommend medication as my Vit D and calcium levels were fine. The diagnosis shocked me as I have been active all of my life but I thought I should up my game and joined the gym where they gave me very specific exercises for bone density. After a couple of years I had my bone density checked again and my bone density had improved in to the normal range apart from my spine which had deteriorated. At this point the dreaded Alendronic acid was advised which I declined so was discharged from the osteoporosis clinic "There is no point in coming back if you are not going to take the meds", charming! So I am very disciplined with my exercise routine, gym twice weekly, pilates classes (excellent for core strength and protecting your back) aquafit, walking and cycling although cycling does not hep bone density as it is none weight bearing. There is a very good forum much like this one called Team Inspire where you can select osteoporosis as your medical condition of interest, some good advice and tips on there. Just a point, if you take hydroxy you should be using factor 50 sun block all year round as we are at higher risk of skin cancer but the down side is the sun block stops our absorption of Vit D. I now take Vit D all year and asked for this on prescription and I also get the sun block on prescription (just mention cancer and chemo drugs to GP and they seem happy to prescribe what you want). I am very slightly built and we 'petite females ' tend to have low T scores on our Dexa scans, again you will read lots about that on Team Inspire. For me exercise is the answer and of course a healthy diet for both of my conditions and up to now I have had no blood clots or snapped bones so fingers crossed. Good luck and do your research before accepting the osteoporosis meds.

[Auggie17]

I have ET Jak2 and am 68 years old. I am on 500 mg of Hydroxyurea daily and have osteopenia. I am very close to osteoporosis but not crossed over. I take 1200 mg of calcium daily. My MPN specialist has not addressed my osteopenia but my internist does my bone density tests. I have had no issues with this regiment. My understanding is that osteopenia is not treated with drugs but just calcium supplements. Hope that helps.