Prolia and Blood Disorder: I am... - Osteoporosis Support

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Prolia and Blood Disorder

LadyDi2 profile image
33 Replies

I am currently 61 years old. I was diagnosed with osteoporosis when I was 54. I chose Prolia because a known cancer doctor in my area told me to take that option. I took 4 shots over a two year period with no side effects. My next Dexa scan showed improvement to osteopenia. However, I developed a blood disorder called Thrombocytopenia meaning I make too many platelets…… diagnosed December of 2018 after my two years of Prolia shots. I am now on a chemo pill the rest of my life. All my doctors tell me there is no correlation. Has anyone taken the Prolia shots and developed a blood disorder?

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LadyDi2 profile image
LadyDi2
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33 Replies
Jeaniem130 profile image
Jeaniem130

Not on Prolia but wanted to say my sister in law has low platelets blood disorder due to the shingles vaccine.

LadyDi2 profile image
LadyDi2 in reply to Jeaniem130

Good to know! I will not get that vaccine.

HeronNS profile image
HeronNS in reply to Jeaniem130

Do you know which shingles vaccine she received? There are two, very different, ones. Zostavax (being phased out, made with inactivated live virus, and Shingrix, which does not use live virus and is also more effective and longer lasting.

Jeaniem130 profile image
Jeaniem130 in reply to HeronNS

She received the Shingrix vaccine. Her Dr told her it was a rare adverse reaction but it does happen. She ended up having her spleen removed which aided in helping to keep her platelet levels from dropping dangerously low. She had severe bruising on her arms and legs and was was losing blood through urination and feces.

HeronNS profile image
HeronNS in reply to Jeaniem130

Yikes! I'm so sorry to hear this.

To reassure others considering having Shingrix it is an extremely rare side effect. Between 1 and 11 cases per million doses.

Raleigh59 profile image
Raleigh59

I tried to research your situation and like the cancer dr advised, Prolia is given to breast cancer victims who have lost bone. I guess that’s because of treatment and used to strengthen bones in some people with bone cancer.

I didn’t see any known correlation in my quick reading on this. Is your cancer a genetic kind ?

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

My blood condition is not called a cancer, but the drug I am on is a chemo pill. My body is making too many platelets. Not sure if it is genetic. None of my family has had this that I am aware of. My platelet count doubled after the 4 Prolia shots.

Raleigh59 profile image
Raleigh59 in reply to LadyDi2

do you have a specialist hematologist to manage this?

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

Yes! My diagnosis is Essential Hemorrhagic Thrombocythemia.

Raleigh59 profile image
Raleigh59 in reply to LadyDi2

was your count up a year ago ?

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

I’ve been on a chemo medicine for a year and a half to control my platelets. It is high but controlled. Its just very coincidental that I developed this issues after two years of Prolia shots.

Thrombocytopenia is when you have a low platelet count and you stated you have too many platelets.

LadyDi2 profile image
LadyDi2 in reply to

Sorry, it’s Essential Hemorrhagic Thrombocythemia.

KidneyCoach profile image
KidneyCoach

Yes Thrombocytopenia is when there are LOW PLATELETS, not high. Mine are also too low. Blessings

LadyDi2 profile image
LadyDi2 in reply to KidneyCoach

I told you wrong. My diagnosis is Essential Hemorrhagic Thrombocythemia, too many platelets.

Raleigh59 profile image
Raleigh59

did you stay on the Prolia?

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

No, but my doctors want me back on it.

Raleigh59 profile image
Raleigh59

have you started a bisphosphonate because of rebound issues

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

No, my osteoporosis went to osteopenia after my 4 Prolia shots. My doctor told me I could take a break. Then came the blood disorder so I focused on that. Oral meds are not an option for me .

Raleigh59 profile image
Raleigh59 in reply to LadyDi2

Is your hematologist a specialist at your blood disorder . That’s what I learned - out doctors have to be a specialist at the particular disease or disorder

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

Good question. I don’t know. She does have other patients with my issue. But she treats blood cancers.

MayGodBlessYou profile image
MayGodBlessYou in reply to LadyDi2

all convention says that you must continue on a drug like a bisphosphonate, for some time to prevent the deterioration that is caused when prolia is stopped, that should be common knowledge at the g.p level.

just check

intexasnloveit profile image
intexasnloveit in reply to LadyDi2

I’m definitely no expert but through my research, you have to be very careful when discontinuing prolia about rebound or loss of bone. You may ask your doctor about this and perhaps following with fosamax to maintain your bone density.

Smittybear7 profile image
Smittybear7

Scary .I hope you get some answers. They want me to start on foxamax and I am afraid because of the side effects.

LadyDi2 profile image
LadyDi2 in reply to Smittybear7

Nothing is great! The Prolia was wonderful!! No side effects at all after 4 shots. Just very strange I have a blood disorder now that started after my first two shots.

Raleigh59 profile image
Raleigh59 in reply to LadyDi2

I got very high lymphocytes from an mRNA flu shot research study . It was so bad that two doctors told me I had cancer chronic lymphocyte leukemia. One of the doctors was a top oncologist on this location . I told the doctors maybe it’s just the flu shot throwing my numbers out of wack. Well they thought I was an idiot patient. The oncologist told me to tell my kids I had between 2-15 years left of life left. My 3 adult kids were very upset especially my youngest who is 20.

Now he says he never said I had cancer.

I don’t have a recordings of my appt with him but I know what he said. I won’t go back to that dr.

I had to go through expensive testing and waste lots of money for them to say “ yeah maybe it was the flu shot you don’t have any leukemia. “

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

What a scare!!

Raleigh59 profile image
Raleigh59 in reply to Smittybear7

there is a daily fosamax you can try

LadyDi2 profile image
LadyDi2 in reply to Raleigh59

Avoiding anything that goes through my stomach.

MayGodBlessYou profile image
MayGodBlessYou

someone i know on prolia has thrombocytopenia, the haematologist must have some idea of the link

LadyDi2 profile image
LadyDi2 in reply to MayGodBlessYou

I feel like there is a link. Did your friend get the thrombocytopenia after she started the Prolia shots? Mine is the opposite of thrombocytopenia as my platelets are too high.

MayGodBlessYou profile image
MayGodBlessYou in reply to LadyDi2

started at the same time as starting prolia. by the grace of God, friend's platelet numbers are not dire,

but the action of this drug is grievous and the manufacturer's array of activities is criminal

Raleigh59 profile image
Raleigh59 in reply to MayGodBlessYou

I don’t want to do Prolia . Everyone of the medicines or shots has side effects. It’s a question of what risks one is willing to do and doing nothing is a risk. The $3000 vibration plate is supposed to work

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