Reclast for osteoporosis as CLL patient

[Emilerep]

Hi Folks,

I had a Reclast injection last year to help with weak bones. It may be completely unrelated, but shortly after my CLL worsened, requiring treatment. I had been on W & W. Wondering if anyone else had this experience? Thanks.

[GMa27]

Were you near getting treatment last year? Could be coincidence.

I have osteoporosis and took pills for it while on W&W. I also did Forteo shots for 2 years to build back bones. Did not effect my CLL. I decided to stay away from Reclast & Prolia. With shots - it's done and can't be reversed. With daily shots or daily meds- if anything happens, you can stop.

I had FCR 2 years ago. I went back on Actonel in May. Felt it was long enough after chemo and my dexa scans went from osteopenia to osteoporosis. Hematologist said it was ok.

[Emilerep]

Thanks so much for your reply/info. And, no, I was still on W&W. I didn’t start treatment until four months later when a biopsy revealed my CLL was in aggressive mode, specifically in my kidneys. Only later did I find out that Reclast damages kidneys. Could be coincidence, but I still wonder.

I would now encourage others to heed your advice and take a med that can be stopped. Infusions last a year.

[sun_flower in reply to Emilerep]

I had 2 lots of Reclast as my dexa scan revealed Osteoporosis after having a fall breaking 4 fingers, l don't think it affected my cll,but my kidney function declined quite a lot so couldn't have a 3rd,I now have CKD stage 3,be warned but it did build my bones up. 🙈

[Emilerep in reply to sun_flower]

Thanks, sun-flower. Your info on the CKD is very helpful. Mine has dipped to stage 4–perhaps due to Reclast, or perhaps due to CLL. Trying to sort this out.

[fapumpkin]

At the age of 52, I was diagnosed with 5 compressed fractured vertebrae, (after 9 years of w&w,) all at the time of needing to start treatment (nearly 5 years of ibrutinib). I ended up with 11 compressed fractured vertebrae, no accidents just simple things such as turning over in bed or picking a cat up. I am now on my fourth mode of treatment for severe osteoporosis, first treatment made me vomit, after 2 years of annual infusions, they discovered that it had no affect, completed the third treatment, Teriparatide back in August, but because of covid don't know if that has had a positive affect, I am now about to start self injecting (again because of covid) Denosumab. I have even had balloon khaplasty in 3 vertebrae and need to wear a back brace.

I have seen numerous consultants and the orthopaedic hospital I am now under, have all said that my CLL is the cause of my fractures and that there is nothing in my history that would indicate this level of osteoporosis.

I have posted before about fracture risks and long periods of w&w, how important vitamin D is and weight bearing exercise. I was very active at the time of the fractures but when tested for vitamin D, I was found to be deficient.

ashpublications.org/blood/a...

I hope you find a treatment that is both effective and keeps you comfortable.

[Emilerep in reply to fapumpkin]

Thank you, fapumpkin. My sincere sympathy on your orthopedic trials. Yikes that’s a lot to recover from, and I’m sure you are correct about the CLL. I don’t think this connection is widely discussed, so your input about your experience is appreciated.

[fapumpkin in reply to Emilerep]

Thank you, It did take a while to get mobility back & have lost a lot of height. Really don’t want other People to be vulnerable to fractures because of vitamin d deficiency.

[Unglorious]

Now, I am worried, I have been getting Prolio shots for two years now while on Ibrutinib, Prolio is the only thing that works for me in building up bone density, the pill form never helped which I took for many years. Any advice?