I was called by the Endocrinologist's office regarding setting up another injection.
Here it goes.
Me: No, I am not interested in continuing with Prolia as it caused me so much fatigue along with aches and random pains. Right now I cannot deal with the fatigue and pains as my husband is in Home Hospice with me as his CareGiver.
Scheduler: Okay, I will notify your provider. I am so sorry to hear about your husband.
Me: Thank you for being kind.
End of call.
Three days later.
Nurse: I'm calling from Emilee Peterson's office in Endochronology. I'd like to have you reconsider your Prolia shot.
From what I understand you said it caused you fatigue. Dr. Yadda Yadda [I don't recall the head doc's name so Yadda Yadda will suffice]...says that Prolia doesn't cause those types of side effects.
Me [ummmmmmmmmmm jeeze Dr. Yadda Yadda READ the fricking FDA side effects complaints!!!!]:
Oh? Really?
Nurse: Yes, Emilee would like to go over other options with you and we'd like to schedule an appointment.
You know that skipping a dose can make you lose any bone growth you may have had and make you more prone to fractures. Any benefit you have had will be lost.
You know that skipping a dose can make you lose any bone growth you may have had and make you more prone to fractures. Any benefit you have had will be lost.
Me: Yes, so I will more than likely be in the same boat I was in as of December of last year.
Nurse: We strongly suggest with your severity of Osteoporosis that you consider another treatment.
Me: And that might be what? You know I have tried each medication on the market and so far have not reacted well to any one of them.
Nurse: Well the side effects of fatigue are more likely not from Prolia but from the stress of being a Caregiver to your husband.
Me: [Not going to argue, they have all of the answers] Hmmm. Well, I'm not interested in pursuing this at this time. My plate is full right now. I'm caring for myself with CrossFit and leaning on the Hospice and Respite folks.
Nurse: [I could hear her frustration] Perhaps we can set up an appointment in November to discuss a plan. ... You are doing CrossFit?
Me: Yes
Nurse: Recommendations for Osteoporosis are to limit certain movements and weights. You shouldn't be lifting more than 25lbs.
Me: [insert chuckle -- snort] This morning I just finished a series of deadlifts of 85lbs along with pushups. My total weight lifted for the workout was 4,675 lbs in a series of lifts. That was my workout today. My warm up included a personal record of 150 lb for the deadlift.
Nurse: ---very quiet---then... Can I send you over to scheduling for an appointment?
Me: Not at this time.
Nurse: You will contact your PCP regarding your Caregiver Stress and Fatigue correct?
Me: I'll contact her and see her so she can know how well I am doing. Thank you for your time.
I hung up the phone.
Hubby: Who was that?
Me: The bone people, the want me to take the next shot of Prolia and I said no. Now they are telling me that I'll start breaking apart in June. What the F--k. I tried it, I didn't get along with it.
I went to the FDA site to read once more the side effects most complained about with Prolia:
Fatigue is reported by 45% of Prolia recipients. THAT is the first line of side effects.
Dr. Yadda Yadda is full of Sh-t.
Dr. Yadda Yadda is full of Sh-t.
And after I calmed down and pulled some weeds in the flower garden. I thought about it. Fatigue.
Losing sleep as a caregiver doing home hospice is one thing. Since the meds are basically out of my system now, I have not needed daily naps. In fact I am like a mini dozer who eats Energizer Bunny Batteries. Fencing, mowing, weed whacking, hiking, and NOT having fatigue, headaches, and strange pains that come and go.
I went through a whole bottle of Tylenol in 6 weeks after getting my Prolia shot. I haven't had a headache or bone pain since mid March.
I rest my case and am going out for a walk with the dog.
The part that really pissed me off was the fact that it felt like she was disregarding MY vision of what is going on with my body. My Osteoporosis is bad. However I am not in pain. I have been building muscles to protect my bones for years. I work hard on balance, strength, and endurance.
She was just doing her script of what to say to get me in. I may consider it in the future again but not in this timeline.
It's a bit odd because the one thing that has impressed me is your strength and tenacity to get on with things.
ReplyDeleteI'll probably be that way .. until I can't anymore. However, the call really messed up my day. I understand their concern, but they don't live in my day to day life.
DeleteI know better because the date for the next shot was coming up.
Not every doctor thinks this is the best route. Others stress good diet, weight bearing exercise, and balance to combat an invisible disease.
Anyway, thanks for the comment! Much appreciated.
They are practicing herd medicine...what is good for one person is good for all. I know how badly you felt on Prolia and I wouldn't wish that on an anyone. Good for you standing up for yourself.
ReplyDeleteTrue enough. I gave it a try. Every person is very different aren't they.
DeleteAs a respite volunteer I often work hard with client families to get them to advocate.
ReplyDeleteIt's hard enough advocating for your husband, without wasting energy on standing up for yourself. I feel for you. You are doing so well.
Keep up the good work.