Reclast infusion

@eead
I had a spinal epidural about a month ago for spinal stenosis pain.
It did not do anything and now I have the steroid in my body that will lower your score on a DEXA for 6=12 months. I have heard some people do get relief from them but only for a few months and it is another steroid in your body.

@susanphilipson

How many injections of Prolia have you had after 5 years on reclast? Sound like you have not had an anabolic like forteo, tymlos or evenity. What are your dexa scores at this point?

@susanphilipson
Did an endocrinologist tell you to take Reclast for 5 years?

The stenosis is probably your problem, which is why the epidural is being recommended. However, it is also possible that your bones really need what the rec class has to offer and the pain you are feeling at night is due to your bones or your bone marrow fabricating what the RECLAST is helping them generate to strengthen your bones. So hang in there and try to see what they can give you for relief. When I go back for my next RECLAST I’m going to have them slow down the infusion give me less of a dose and flush lots of water and Tylenol before I go in for it. Good luck everyone.

@jpeach you do not need to worry that is only for high dose oral steroids. The injected steroids like you had are localized and only if you were repeating them several times a year would there be any concern? Don’t worry it won’t have an impact on your DEXA nor your bone density.

@dannyandebbie I know you wrote to me re dangers of reclast infusion, I have to get it lost 8 % of my bone in 2.5 years. I walk 2 hours plus a day and do 40 inutes of exercise wwith bands etc, I I am a recovering cancer patient having had my esophagus removed in 2019 for a squamous cell. I have to take omeprazole and Pepcid due to reflux because I don't have any valves. I'm going to take the infusion over an hour. Low salt because I make kidney stones and I've increased my calcium before and will increase it after the infusion as recommended. Are you sure you don't have rheumatoid arthritis or some other disease like Epstein bar that could have done this to you? I have no choice. I've tried exercise and increasing my calcium, and it doesn't work and I'm in severe danger of fracture even if I move the wrong way you're very kind to send me a warning, but I have no other choices. I hope you get better and better and better Naomi.

@naoshapiro1 I too have had Bladder Cancer 5x over the corse of 16 years; not the same as yours but I know at first I felt my life had made it’s complete circle and my end was near. My last cancer was three years ago and each time Chemo was the treatment after the tumors were removed. Yet, the cancer continues to return, so I ask myself why have the chemo if the cancer continues to return? I do worry about the cancer spreading so I do semiannual follow ups. I do have Ankolosing spondylitis and have had it for better than 50 years. When it first hit me I felt helpless and started to fade away, lost all kinds of weight and pretty much stopped eating. It really affected my mind and at the time I was living with my elderly grandparents. In a way, that is what saved me because I was to be there for them not them for me! I found support groups, started water exercises, moved into a small camper so that my grandparents did not feel so compelling to be at my side and daily I slowly did things for them as my body slowly recovered. I always felt a lot of it was controlled through my mind. The mind is Very powerful. I’m sorry for all that you have had to go through! It’s not easy but try to stay positive and remember, you are the one in control of your life and body. Best of luck to you!

@dannyandebbie I am very sorry for what you have been going through and it seems that you have done so much for your grandparents and for yourself it took all kinds of strength of body and mind to do everything that you've been doing and I really look up to you for that. I am so careful with what I eat. I weigh my food by grams and ounces and I'm doing everything that I'm supposed to do to get this infusion into me without pain. I'm drinking a huge amount of water so that I won't get kidney stones which I've had in the past and they say to make sure you drink 28 ounce glasses of water before you go and it's only 11 o'clock in the morning and my infusion is 1130 tomorrow morning and I've already had about 40 ounces of water. I try to drink about 85 ounces of water a day. I also increased my calcium intake to about 1500 mg per day which is what they recommend before your infusion I get about 1085 mg of calcium from calcium citrate powder and I get about 400 mg of calcium from the food I eat I can't eat milk product so I get the calcium from other sources. I eat four small meals a day and finish eating at 4:45 because I go to sleep at nine and if I don't stop eating then I'll have terrible burning, burning, burning reflux because I lost 8% of my bone in 2 1/2 years because of the omeprazole I have to take I'm gonna start physical therapy soon so that somebody can carefully supervise me while I learn to lift weights because I do exercise 40 minutes in the morning with bands and I do isometric exercises too sitting standing and lying down and I walk over two hours a day but apparently nothing is enough because that omeprazole just takes bone away from my body. I'm prediabetic and hypoglycemic so I have to be very careful what I eat. I'm 99% vegan and I just added about one and a half ounces of sardines with a bone in it to increase my calcium where I was eating one and a half ounces of chicken all the rest of the food I eat is totally vegan and organic. I'm really really really hoping that my carefulness will keep me from having the pain in the suffering that you have gone through and I'm really really sorry that you have gone through it. I'm sure the chemotherapy has taken a lot from you. I had radiation and chemo almost 7 years ago when they took out my esophagus for a squamous cell, I think of you and hope that you will transcend this terrible experience and that your bones will get better and you will get better Naomi

It does sound like you are doing all you can to take care of yourself! I wish you the Very best and pray you receive a positive outcome! Best of Luck and hope you will follow up with how you continue doing!