Reclast infusion long term side effects

Reading through all of these posts describing your side effects from Reclast is frightening. I feel for each and every one of you. I am on the cusp trying to decide whether or not to try Reclast. Fosomax gave me miserable nausea and vomiting. I am a 78 year old small boned female and I have had osteopenia for a long time and only recently moved into the actual osteoporosis diagnosis in my femoral heads. I have already had 4 fractures not caused by osteoporosis. I have CRPS, a chronic pain disorder which makes the choice for an osteoporosis drug very limited. My endo has chosen Reclast and Prolia as a second choice. He sent me to a second endo who specializes in osteoporosis and bone density disorders. They are both recommending Reclast. I am going to talk to my pain management specialist about the Reclast but I am very strongly leaning towards saying no. This is a really hard choice for me as I have a number of other comorbidities making exercise a poor option. I am limited to walking which I am already doing. It seems that I have to make a decision about whether to take a chance on a medication that could make my pain problems worse or take my chances on more fractures. I don't know how to decide. What are those of you who have decided against any more Reclast infusions doing? Have you tried any different drugs or are you simply hoping for the best? Getting old shouldn't be this hard!

@dannyandebbie Hello, I am so sorry that has happened to you. I find that some doctors deny things because they are afraid of being sued. It stinks!

I had a horrible first infusion. But I am going back next year. They will do it entirely different. (don't know why they didn't do that from the start!!!) But I read the research and a VERY SMALL amount have reaction (like 1%?) and a one-hundredth of that percent have problems at the second infusion. My take on it is that the medicine causes a reaction in the places in your body that need help. I had the WORST reaction in my cervical spine and it turned out my bones were "mush". So I think the medicine goes where it needs to and that you just don't know that you really needed it there. I'm having positive results, and I'm going to stick with it even with the hardships because I NEED to have stronger bones. I went into menopause early, and it really caused havoc with my bone density. I go to UCSD for infusions and they are caring about making my next infusion better so they will slow it down and give less medicine. They have found that the dose can be lowered without compromising the result. Yes, it was the singularly most awful experience I've had but I'm not giving up.

@loriesco
Have you had any updates on your T Scores and bone markers, pinp, CTX, calcium, D

@osteopatient2026 yes they are all good. I didn’t have as much of an increase as they wanted from the first year of TYMLOS but I think that’s because I wasn’t. I was injecting in the thigh most of the time which they had said was OK because I have a mobility problem to look at my stomach while I inject. So after much investigation, I stretched myself to only inject in my abdominal area. I went to the orthopedic surgeon yesterday, and there was a huge difference in the density of my bones down my spine. It is possible that part of that could be the difference between the film, capture of the x-ray, but we’ll see at the end of August when I do my next DEXA and see the doctor and figure out the next course of action for the following year. It will report back after August 20 on all the scores. I previously posted my CT X/PN1P and my 1.6% increase in bone density the first year and my base lines. Nobody should rely entirely on the tests because they are only approximations as I found out. Make sure you’re getting your DEXA with the TBS score so it’s consistent. That’s the most important thing from year to year. Your vitamin D has nothing to do with your bone density and neither does your calcium level so I wasn’t sure why you mentioned those. You should not do any supplementation without having labs first! When it comes to vitamin D and vitamin and calcium! If you carry genetic coronary artery disease and you supplement with calcium it is really bad as the supplemental calcium causes your arteries to harden. My calcium has stayed to consistent number my entire life exactly what it should be which has helped me avoid coronary artery disease progression. My vitamin D was low 11 years ago so I was put on a supplement and then the supplement was increased, but I get tested periodically so the vitamin D doesn’t go high. It also can be dangerous if it’s too high, so I keep it right in the middle. When they tell you to drink milk when you’re a kid to build strong bones, getting your calcium phosphorus and vitamin D it’s very different when you grow to be an adult and you may be lactose intolerant and inherit genetic diseases. Your natural immunities from birth wear off when you’re a teenager and 77% of Americans are partially lactose intolerant. I am both lactose and caffeine intolerant so drinking and eating dairy with lactose in casing did nothing but ruined my intestines by the time I got to be 60. Had to change my diet entirely.

@llander1966, you might ask about Forteo. It is particularly effective in the femoral head. It is seeming as though patients with autoimmune diseases are particularly susceptible to Recast's side effects long term.
People who do have side effects with Forteo can just quit taking the medication, because it leaves the body quickly.
There is a common wisdom spreading among endocrinologists that it is better to start treatment with a bone building medication. You might ask because the medications suggested to you are both antiresorptive.
While once a year or every six month treatment is tempting, it has the risk that you mention-- long term side effects.
You probably already know that because we are small boned our dexas overstate our bone loss.
I'm 75 on my fourth year of Forteo without any side effects.
If you do decide on Reclast ask for a lower dose and slower infusion.
Bless your choice with luck.

@gently Thank you! That is a very good suggestion. I did not know that endocrinologists are changing their thinking to starting with a bone building medication. Like you said those of us with small frames tend to see overstated bone loss on our scans. That is even more reason for me to take my time making this decision because I think I can wait a bit. I will ask my endo about Forteo. How long will you stay on Forteo? Is there an end point at which you must take a break or stop it? I really need to research Forteo now. Thanks again!

@loriesco
Yes…Checking Calcium and D are not directly connected to bone density. I understand that. Just good to monitor that one is not overshooting or under the ranges being looked at.
After-all the osteoclasts and “blasts” take and use it to build.
“Some” of the latest studies don’t show a correlation of calcium intake and an increase in coronary calcification…
So much conflicting information out there.
Love all your valuable information…
I was told it’s okay to inject in my flank…now I’m thinking that, like you said, there might be better absorption in the abdomen.

@gently
My doctor said it’s a 20 minute infusion that may be an option after Tymlos. Can you provide any links to the optimum length of time? I’m hearing 45-60 minute infusion

osteopatient2026, I'm often quoting the gentleman who ran final large clinical trial for Reclast "Things I routinely do when I treat patients with IV zoledronic that not all physicians understand. First, I order the infusion to dilute the 5 mg of zoledronic acid (which comes in 100 mL of D5W) into 500 mL of NS (normal saline), thereby diluting the drug from 5 mg% to 0.8 mg%. Then I order it to be administrated over 60 minutes, instead of 15 minutes. Giving an N-BP more dilute and more slowly makes it even safe{r] for the kidneys. The 3rd thing I always do is order the infusion nurses to administer 650 mg of acetaminophen to the patient during the infusion, and I tell the patient to take at home the same dose of acetaminophen (two regular strength Tylenols) with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose with breakfast the 2nd morning after the infusion. These 8 doses total of acetaminophen reduce the chance of a symptomatic APR from 20-30% to <1%."
At the Stanford infusion clinic 60 minutes with the dilution is standard.