I was diagnosed with Multiple Myloma 5 weeks ago.I'm receiving Chemo, 3 weeks on and one week off. I told my regular doctor and my cancer doctor about this pain. They ordered an MRI, which came out negative, but have not prescribed anything else for this pain. I've only received one shot of prolia. There must be something to stop this pain.
Prolia - Excessive pain in the groin, hip and upper thigh for a week. What can I do for it?
Question posted by joys6boys on 11 July 2013
Last updated on 11 July 2013
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Answers
How long ago did you have the Prolia injection? It has a half life of 4 weeks which may dissipate it. For the first 6 weeks after my Prolia shot, I had unbelievable skin pain, feeling like my face was on fire, plus excessive pain throughout my jaws and I felt every vertebrae on my soft bed. It is now 9 months later and my skin is still inflamed all over my body, plus all my bones hurt. It hurts even to sit on a soft padded chair. Plus I got excessive high blood levels of my parathyroid. I agree with Consumer Reports advice about all osteoporosis medications. They say for the little benefit from these medications, it doesn't warrant the side effects which can last indefinitely. My bone scan came out 6.4% better. The endocrinologist thought it was a great result. But really big wow--being sarcastic. And for the pain I've been in ever since. It's not worth it. I certainly hope that your pain will go away soon, but I would think twice before ever getting another Prolia injection or any other medication for your bones. If you are excessively careful, which my mother was with her bad osteoporosis, she never broke a bone. And she died at 88 years old. That's just my opinion for what it's worth.
Mornin' Sara,
I was hoping you would share your experiences about Prolia, darlin'. Unfortunately, with multiple myeloma, we are given these bone builders to strengthen our bones to lessen the chance of lytic lesions forming. Since our cancer is in the bone marrow, in the plasma cells, weak bone can leave us open to formation of lesions. So, for MM patients, it is an absolute necessity. Myeloma lesions are very fast growing and a 650 on the 1-10 pain scale. That was the worst pain I've ever had and hope I never have it again. Since it is in the plasma cells, no bone in our bodies is safe. I've talked to people who formed lesions on their skulls, cheek bones, heels of their feet, fingers and toes.
I have heard horror stories about Prolia and there is NO chance I would ever take it. Zometa has worked very well for me and I never had those horrid side effects that you got from Prolia. With the Zometa, once my lesions were destroyed by radiation/chemo, it began strengthening the area where the lesions were. I essentially had holes in my bones. Now, calcium has filled those holes in and the bones aren't so weak. I'm with you though, regarding these bone builders for arthritis/osteoporosis. A waste of time and money.
Love ya!
Kath
Sorry that I put down all the bone building meds that you both have to take. I didn't know that and regret my remarks to the two of you. The Prolia is a very new medication that was not tested that much before being released. That was a big mistake on my part to not research it more before I had it.
Oh sweet Sara,
No apologies necessary. Nobody can know everything about every disease. Not possible. You taught me to never agree to Prolia injections (thank you!), and I hope I taught you some of the necessities for treating myeloma. That's what I love about this site --- we can learn so much from one another. You, my dear, are a wealth of knowledge! I certainly appreciate you!
Love and hugs to you!
Kath
joys6boys,
Welcome to the site. I, too, have multiple myeloma. Let me guess, you are getting Velcade. The schedule sounds very familiar. It is what put me in remission. Velcade is a good medicine for MM. I get Zometa, which is similar to Prolia. I have talked to many people, though, who have had serious problems with the Prolia injections. Maybe your doctor would consider switching you to zoledronic acid (Zometa) infusions? One member, if I recall correctly, had serious and permanent effects from a Prolia injection. Hopefully, you'll hear from her as well. I personally, would never agree to take it, but that's my opinion only. You are in the very beginning of your cancer treatment. Will you have radiation, too? Don't get discouraged if you seem to be getting chemo for a long time. I got either Thalidomide or Velcade for 20 months. The only break I got was the one week off per cycle once I started Velcade. But... with chemo, radiation and Zometa I went into remission and have had no recurrences. I'm a 9-1/2 year survivor of MM. Just because it is incurable, that doesn't mean it's not treatable. I'll add you to my friends list so you can send me a private question and we can chat. I hope I can help you through your journey by sharing my experiences. Just give me a holler. I'd love to chat with you.
Aren't you on pain meds for the MM? How many lesions do you have? If you're not on pain meds, call your doctor and tell him you're in pain and need a pain med. For crying out loud, I was on morphine while my cancer was active. I hope you don't have one of those doctors who doesn't like to give pain meds. MM is undescribably painful and your doc knows that! If he won't give you the meds you need to make you comfortable, then he is not the doctor for you. Seriously!!! Please let me know what your doctor says.
Best regards and prayers,
Kathy
Related topics
pain, cancer, prolia, doctor, mri
Further information
- Prolia uses and safety info
- Prolia prescribing info & package insert (for Health Professionals)
- Side effects of Prolia (detailed)
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