I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really now bad - my neck femur is -2.5
My GP doctor wants me to start the prolia injection; however, my oncologist said it would enhance the immunosuppressive effect of Jakafi and we would have to monitor the increased risk of infection.
Do any of you have this problem and have you had increased infection due to the interaction of the 2 drugs?
I was in the hospital a year ago with pneumonia/sepsis/blood clots and just recently the beginning of 2024 with the flu. Any help or suggestions would be appreciated as my immune system is already pretty weak. Thank you.
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Buggerbear
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MONITOR: Concomitant use of immunosuppressive or myelosuppressive agents with denosumab may increase the risk of serious infections. Denosumab binds to and inhibits the receptor activator of nuclear factor kappa-B ligand (RANKL), which is expressed on activated T and B lymphocytes and in lymph nodes. Thus, denosumab alone may increase the risk of infections. In a clinical trial of over 7800 women with postmenopausal osteoporosis, the incidence of nonfatal serious infections was 3.3% in the placebo group and 4.0% in the denosumab group. Specifically, hospitalizations due to skin infections including erysipelas and cellulitis (<0.1% placebo vs. 0.4% denosumab) and serious infections in the abdomen (0.7% placebo vs. 0.9% denosumab), urinary tract (0.5% placebo vs. 0.7% denosumab), and ear (0.0% placebo vs. 0.1% denosumab) were reported. Endocarditis was reported in no placebo patients and 3 denosumab-treated patients. There was no difference in the incidence of opportunistic infections or infections resulting in death between the placebo and denosumab groups. The overall incidence of infections was also similar between the two groups.
MANAGEMENT: Caution is advised if denosumab must be used in combination with immuno- or myelosuppressive agents. Patients should be advised to contact their physician if they develop signs and symptoms of infection such as fever, chills, diarrhea, sore throat, muscle aches, shortness of breath, blood in phlegm, weight loss, red or inflamed skin, body sores, and pain or burning during urination. The need for continued denosumab therapy should be assessed when serious infections occur during treatment.
Did the doctor discuss the other treatment options for osteoporosis like one of the bisphosphonates?
Please let us know what you decide and how you get on.
Thank you as always Hunter!! You should have been a nurse or a doctor as you would have been excellent!!
I contacted my GP again and asked if I could take Fosamax instead. The Dr.'s medical assistant called me later and told me Dr. said "NO". I guess this concerned my GP and I was then told to get my oncologist to prescribe treatment (as he more or less washed his hands). I sent my oncologist a message and waiting for a response. (I am looking for a new GP).
Upon reviewing my old records, I took Prolia in 2015 for a year or two and my T scores improved, so I went off the shot. Now I don't think you are supposed to stop this med after you start it, or the condition worsens.
Keep let everyone know what advice I get and how everything works out.
Sounds like it is time for a new GP. More for attitude than lack of knowledge about MPNs and their treatment.
Just as a side note, I would not seek osteoporosis care from a GP, particularly when there is a medically complex case like on with a MPN. This is more the province of an endocrinologist or rheumatologist. Your MPN care team may be able to recommend someone that they have worked with in the past.
I had a stem cell transplant about 15 months ago and my immune system has been weak. Therefore I've been on various prophylactic medicines to combat various potential infections + my immunisations have been redone. The list is longer than those I had as a child and includes ones for pneumonia. Is it worth raising this with the doctor?
Thank you Scaredy Cat for your response. How wonderful you were able to have a stem cell transplant and I am sure you are taking lots of medicines to combat the possible potential infections. I am hoping with my blood labs done every 4 weeks that I can identify and combat any infections that may arise from combining Jakafi and Prolia.
I am being optimistic but we all have to think positive and put out one fire at a time! Wishing you best wishes in your journey !!!
I am no expert but I just wanted to let you know that I am on Rux for MF and have been having prolia injections for several years. This has been with my haematologists agreement. They have been very successful in reducing my osteoporosis and I have not been aware of any side effects
You must of course follow your own doctors advice but I thought that I would let you know my experience
I’m sorry you’re having so many health issues. I have polycythemia Vera also but I don’t take jakafi. I get the prolia injections and haven’t had a problem. My PC doctor wanted me to have them and my oncologist seemed reluctant but had me start them a couple years ago. I have a bone density test this year so hoping my osteoporosis will be better! Take care, best wishes for you.
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Side effects of JAKAFI
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ET: Changing from HU to Jakafi or an Interferon treatment
