Hello just a quick question for all. Because of having osteoporosis,my doctor has recommended “PROLIA” the twice a year shot
. I have read in the literature that states one of the reasons not to take are immune compromised .has anyone had any experience with this.
I am now reluctant to take it of course.
What say you? Thank you for answering.
A quick google search yielded this answer:
I have osteopenia/osteoporosis, in addition to CLL. Prior to my recent diagnosis of Stage 0 CLL, I was receiving Prolia injections every 6 months. Does this treatment conflict with my CLL, as it targets the bones and growth?
There is no contraindication to using Prolia for your osteoporosis in the setting of CLL. CLL can rarely be associated with osteoporosis, but almost all osteoporosis seen in CLL patients will be the routine osteoporosis of aging. It is important to use whatever therapy is best to treat the osteoporosis.
cllsociety.org/2018/03/ask-...
We are all so different with our cll, however, I think you should ask your cll doctor if prolia is good for you. I imagine the analysis will be a risk/benefit one. Do the benefits of prolia for you outweigh the risk? Many times in deciding if a drug, or a vaccine, are good for a person, that person will focus on the risk and potential side effects of the drug. They fail to factor in the risk of not taking the drug.
Prolia clearly has the potential to have bad side effects, but so does untreated or under treated osteoporosis. Hopefully your doctor can help you balance those risks.
Thank you
I have dealt with osteoporosis for many many years & before my dx of CLL. My endocrinologist & hematologist said any treatment is fine. I did weekly actonel for 5 years. Then daily Forteo injections for 2 years to build bones ( all the other bisphosphonates just keep the bones you have from breaking down more) then 5 year break, now doing monthly Actonel. I didn't want Prolia shots due to side effects. With pills if u have issue, you can stop. Once Prolia given, there is no reversing. That said, my mother & sister did well with Prolia. My sister did Forteo injections too.
Osteoporosis can be more serious than CLL. Very important to treat it. I see an Endocrinologist for it. My gyno insisted I see specialist to treat my osteoporosis. Currently have osteopenia. 🤞💕
You may have responded to the wrong person. I wrote that I see an endocrinologist.
No connection to CLL. My osteoporosis is hereditary- from my mom. My CLL is hereditary from my dad. CLL is a marrow/ blood condition. Doesn't break down bones.Unfortunately osteoporosis does break down bones.
I chose Actonel & Forteo not Prolia.
Thank you so much for your info. Sorry you had that experience.I saw a warning about not taking it if one is immune compromised.
Thank you for your time,I appreciate that very much.
I am immune compromised and was given one Prolia injection and had terrible side effects! The cost was also a big concern? I went to my bone health specialist and she put me on Reclast! Absolutely no side effects and was covered by my insurance! Once per year and only two years instead of forever on Foxamax or Prolia, neither of which I could tolerate! Good Luck and God Bless!
Thank you for your answering I will look into reclast.. this is all so worrisome..Gmj
I have been on Prolia for two years and I am currently in treatment for CLL with V&O. I worried about starting the Prolia for the same reasons you are. I was very concerned about the dangers of stopping Prolia. In the end I started it anyway to help prevent the terrible vertebral compression fractures my mother suffers from. Both the hematologist and the gynecologist encouraged me to take the prolia. I haven’t had any issues yet, but I understand your reluctance. It is a difficult and scary decision
Due to having 7 compression fractures of my vertebrae I have been on Tymlos for almost 18 months to build bone and with recent x-ray determined that it is working nicely. (started at age 63) I will begin Prolia in April to harden the bone that has been built up and hopefully not have further difficulty. Am being treated at a research hospital and they have started a project to evaluate the occurrence of osteoporosis in CLL patients as they are seeing it frequently. ( I have no family history of osteoporosis) I believe that CLL patients have a tendency toward osteoporosis due to our CLL. I advise to see and endocrinologist and begin by building bone back before you begin with hardening that bone to resist breakage.
Thank you that’s good advise. I will look into that. Nice of you to respond. Gj
I failed to mention that I was diagnosed with CLL over 17 years ago. long term effect of CLL?
I’m 8 years cll and on w&w
That's interesting research.. When does it report? I too have osteopenia and have broken my ankle and 2 ribs in the last year.. My mum had ostosis which is bone nodules but no osteoporosis so I did wonder if it was in anyway connected to CLL.. I'll be interested in the results of your study
the research just began about 16 months ago so it will be a while yet before the results are available. The endocrinologist is seeing many CLL patients coming in to her with Osteopenia and osteoporosis She is the Doctor that asked for a study as there have been conflicting reports. My CLL doctor told me no chance but the Endocrinologist begs to differ.
interesting that they don't agree isnt it ??
My mother and grandmother both have/had osteoporosis as I do. I researched Prolia and decided not to have the injections due to side effects. I was on Fosomax for a year and may begin it again. My CLL specialist did say Prolia was an option for me when I was taking Brutinibs.
worthy general warning re Prolia
Joanie. I’ve been taking prolia about four years and started serious CLL treatment two years ago. … I got osteolysis in my left hip, replaced in 2002, and had to have it revised because the bone had lost density and the outside was cracking. My surgeon put on an armature and gave me bone grafting (not sure of terms, but like rooting hormone right in hip). Afterward, an osteoporosis specialist at HSS started me on Forteo (no help and carcinogen, hence scary even before CLL) and then Prolia. I recently revisited the surgeon for a look see on progress and the bone did do well. Looks denser. That’s the plus. I’m on it for at least two more years. …. The negative may be, according to one of your reply posts, you can’t stop it—certainly at our age with natural risk of bone trouble. No doctor had actually told me this, btw, except my pcp/gerontologist alluded to it in a visit. My CLL doctor gives me the prolia shots, so he’s more than aware. Anyway, I’ll have to nail down the exit strategy if there is one or needs to be. … The moral of this story is Rx is terribly complex today, certainly for older people and with CLL, And you have to do your homework, which I’ve resisted but happily you’re doing. Good thoughts. Bill
Oh so sorry NYC Bill, what a nightmare for you. I hope the future will be brighter .. I’m also now going into physical therapy because I’m suffering with degenerative L2 and L 3 back problem pain. Life is tough. Thank you for your responding to my questions, it’s all hard decisions.
I’m still on watch and wait and at 77, I don’t know what to think.
Thanks again, J
Thanks Joanie. It’s not so bad. You do what you need to do. PT & regular exercise do help a lot in all this. Bill
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Don't take it..my first one was ok but by second one lost 2 bridges in my teeth. Oral surgeon said not to take anymore..and it stays in your system for months....so unhappy...I can't have implant replacements either. Not taking anything now due to side effects.
Tooth extraction Ibrutinib
Neutropenia with venetoclax. Give me information.
Once you start Ibrutinib you can’t stop? 
Confused are the dr.s still using chemo with new drugs
