Drugs: After 3 Injections of Prolia (... - Bone Health and O...

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Drugs: After 3 Injections of Prolia (1.5 years later), I have finally put 2 + 2 together! With a previous healthy life-style (I am 71, male

After 3 Injections of "Prolia" (1.5 years later), I have finally put 2 + 2 together! With a previous healthy life-style (I am 71, male), over this same time period, I have developed many health problems. After a trip to FL and a lot of exposure to the sun, I developed what I thought was a bad sunburn (very blotchy skin which never went away), I finally consulted a Dermatologist (Derick Dermatology, highly recommend) and was diagnosed with "Vitiligo" (a rare autoimmune skin disease, <5% pop.). Then a few months later, I started having problems with retinal tears, and ultimately a detached retina in my rt eye which only partially recovered. Most recently I have been diagnosed with Hashimoto's disease by an Endocrinologists. After lots of leg muscle cramps & extremely itchy skin (arms), rashes & blisters, I have decided never to take "Prolia" again (due in September)!

Has anybody pursued legal action (against "Amgen" or Dr's prescribing)? I would like to join!! BP

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snodog47

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Prolia

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HeronNS7 years ago

Please have a serious conversation with your doctor as you may be opening yourself up to rebound fractures, which have been known to occur after denosumab (Prolia) is discontinued. It may be advisable for you to take a"bridging" medication for a while to avoid this possibility.

• in reply toHeronNS7 years ago

Happened to me after discontinuation three vertebral fractures and a fractured sacrum after a year and a half stop for the same reason rashes it’s critical to bridge the discontinuation with another modality

Meepoo• in reply to7 years ago

What were your T scores prior to starting Prolia? I discontinued Prolia after 3 injections. Just started Fosamax weekly last month but the heartburn is horrible. I started taking Vitamin K2 (mk7) 6 months ago. I also take D3 And calcium with magnesium.

I stared out with a T score of -2.6 in a couple of areas. I was talked into the Prolia by my gynecologist. My primary doctor wanted to wait until my next scan to re access. I regret ever starting Prolia.

snodog47• in reply toHeronNS7 years ago

Thank you for your response.

snodog47• in reply toHeronNS7 years ago

OK, thank you.

7 years ago

How do you know Prolia caused these problems? Many people have symptoms similar to yours (Hashimoto's and other autoimmune diseases) most have never used Prolia.

HeronNS• in reply to7 years ago

Just one of a number of articles now available for our perusal:

ncbi.nlm.nih.gov/pubmed/293...

Note the rebound is described as an "alarming phenomenon".

sweetsusie7 years ago

Wow! What a horrible story. I'm so sorry! I won't take any of the bone meds. due to all the bad side effects they cause. I don't understand how these drugs are still on the market, actually. Ask your doctor if he'll prescribe testosterone for you instead. I am a female (70 years old) and my doctor allowed me to go on HRT.

snodog47• in reply tosweetsusie7 years ago

How wud testosterone help?

sweetsusie• in reply tosnodog477 years ago

Testosterone will BUILD YOUR BONES back..just like estrogen does for women. Can't hurt....

Nanaedake7 years ago

I don't know anything about prolia as I'm new to the osteoporosis thing but have you had your B12 level tested and excluded a deficiency? The reason I ask is because it's associated with vitiligo. As you have one autoimmune condition, it's possible you have poor vitamins absorption which is common with Hashimotos. Also I'm not sure whether pernicious anaemia is implicated in osteoporosis but worth excluding. Healthunlocked Thyroid UK Forum might be helpful?

snodog47• in reply toNanaedake7 years ago

I thank u for this good information; and I will ask my Dr for more info.

Nanaedake• in reply tosnodog477 years ago

Having one autoimmune condition makes you more likely to develop other autoimmune conditions. Hashimotos thyroiditis, usually called autoimmune thyroid disease by doctors affects gut function and causes poor absorption of vitamins. You must get B12, folate, ferritin and vitamin D tested. When you do, post results on Healthunlocked thyroid UK Forum for good advice in connection with Hashimotos.

Doctors often say all fine if vitamins blood tests are within NHS lab range but bumping along the bottom of the range will not make you feel well and won't help your bones either. 70% of your immune system resides on your gut so if Hashimotos imbalances gut function then health is thrown off balance. Lots of good weblinks on Thyroid UK Forum for improving gut health.

Don't expect your GP to know about the connection between thyroid, gut function and vitamin levels as in the main they know very little about Thyroid disease and even if you get a referral to an Endocrinologist most of them are diabetes specialists and know nothing about Hashimotos thyroiditis judging by the comments and information from over 80,000 registered users of Healthunlocked Thyroid UK Forum.

Vitamin D deficiency and low B12 are very common with thyroid disease and rarely routinely investigated in Primary Care.

Birdmama7 years ago

Be careful about suddenly stopping Prolia. I agree that it caused problems. I had some serious immunity issues because of Prolia and stopped suddenly which airport am certain triggered 6 spinal compression fractures. I My mobility has decreased significantly. Talk to your Doctor about using something else as a follow-up to stopping Prolia.

Meepoo• in reply toBirdmama7 years ago

I am curious what your T scores were prior to taking Prolia?

I had 3 shots of Prolia and decided to discontinue it. I started taking Fosamax weekly last month.

My original T score -2.6 in left hip and lower back and osteopenia in other areas.

My doctor scared me into taking it and said i would only need to take it for 2 years. When i told them my plan to discontinue it they told me about the risk of vertebrae fractures. I am so mad I ever started taking Prolia.

Someone said on a Prolia Facebook page that the fractures are more likely to happen with people who started out with severe osteoporosis, but i don't know if that is true.

k_J537 years ago

That’s awful and very worrying I’m on my second prolia injection I have no symptoms apart from my eye sight it appears to be deteriorating iv bern to the optition several times and he can’t see any difference in my test best of luck

snodog47• in reply tok_J537 years ago

If you see a lot of "" in one or both eyes, see a retina specialist immediately (or if u see flashing lights around your peripheral vision, or any blackness of course)!