Reclast Infusions: Side-effects & Recovery time

@awfultruth, Thanks for the intel about CTX. My rheumatologist said that a DEXA is the only test necessary while on bone builders. I essentially fired that doc and met with a second rheumatologist last week. This doc is fantastic - he actually listened to my questions and provided thoughtful, informative answers. He agreed that a baseline CTX would be helpful going forward and understood my apprehension about Prolia.

The new doc also wanted to confer with a colleague about the administration of Reclast after having perhaps 6 or 7 infusions. I should find out today if that will happen. When I asked him what the consequences might be for too many Reclast infusions, he stated, as another member stated here, the fear is ONJ and spontaneous femur fracture. He also ordered x-rays of both femurs to get baseline info.

Happy Monday, all! Cheers!

I believe McCormick says over 100 for CTX level that is okay for Reclast, but I'll check.

Update on my Reclast experience: I had a 20% "test dose" on 6/12 w/one hour hydration (and self-hydration for day before and day of) before the infusion and the 1 mg was given over 1 hour. My doc is being careful with kidney disease , afib and general sensitivities.

I had a fever for 5 days. Tinnitus got worse. A couple of weeks after the infusion I had pins and needles in hands and feet. I am relieved to say all of these effects were gone by 3 (?) weeks and I am free of side effects at the moment. My kidneys were fine with all that hydration.

I will do another 1- 1.5 mg in September (3 months) and then in another 3 months go up to 2 or 3 mg.

Hi @windyshores

I’m glad your system tolerates Reclast, even if it is after some time. I’m sorry you’ve had some difficulties with the med; we seem to have opposing reactions to OP drugs. My doc reported that the infusion time protocol has been increased to about an hour with hydration before/after and use of acetaminophen for a few days following.

I’ve been fortunate that my Reclast infusions did not cause any issues and I’m hoping that, if approved, the future one(s) won’t either.

Wishing you the best with future infusions.

Cheers!

I is the exact recipe for this Reclast infusion. i am reading Tylenol but how much and how much before the infusion and how much after. i am hearing that Benadryl is good also. How much and exactly when. On the infusion itself, do you use saline before or just slow down the infusion to one hour. What do you do after, add more saline? Then what do you do. When you hydrate before, how much on the day of the infusion and how much after?

Thanks,

@benaieone sorry I wasn't clear. I think I am doing fine so far with Reclast! I can see that that message did not get through in my post. I expect side effects with all drugs and am grateful when I can tolerate one.

@serious I did 325mg tylenol just before the infusion and at dinnertime. Then as needed. Since I had a fever, I took it every 6 hours or so for the first 2-3 days then stopped. There is no set formula or dose that I know of.

Benadryl would make it hard to drive home. It addresses allergies. I did not do Benadryl. Do you have an allergy to any ingredient?

Most people do not have IV hydration which, I was told, equals two big glasses of water. If you have kidney disease, hydration is essential. The day before, day of, and a couple of days after. If you don't have kidney disease, you want to do the same!

Could you please sgive us the names of the Chinese herbs your acupuncturist gave you? were they herbal infusions, or were they moxibustion?
Thank you very much

I had reclast 4 months ago. I need to give a little background prior to infusion. Nov 29, 2023 I had right shoulder surgery. 4 anchors put in, within 36 hours of this I had an ulcer rupture from nsaids. Emergency surgery to save my life. Just after having reclast while in therapy for my shoulder I had a nice size lump in my left tricep. I thought it was from over use due to the right arm surgery. Therapy stopped a few weeks later. My left tricep stays extremely swollen (Looks like a Popeye arm), extremely sore. It even hurts to put deodorant on. I also have pain in my left hip into my thigh. I feel like my legs can't carry my weight up stairs. The shoulder I had surgery on is still very, very painful. I have seen my orthopedic surgeon. He has me starting therapy for the Popeye arm this week. I have searched on line what is happening and it hit me that the reclast must be the culprit. I can't take nsaids as I've already had a rupture and Tylenol does very little if anything. I am irritable and very depressed as there seems to be no way to counteract what is going on!

I’m sorry to hear that you are suffering.

Deep breathing and meditation to om chanting @417 hertz helps me.

CC

Hello All,
I thought I would add my experience with the Reclast infusion. First a little background on my medical history. I have a few autoimmune diseases including Hashimoto’s and vitiligo. I also have IBS-C which I control with my diet, and I was diagnosed with stage 1 breast cancer in December 2023. I had a double mastectomy, and I did not need chemo or radiation treatment. I also opted not to take any ongoing medications. During the timeframe of my breast cancer diagnosis, they thought it was a good idea to do a new scan and discovered I had moved from osteopenia (was -2.2) to osteoporosis (-2.5). This was not a surprise to me as my mother had osteoporosis and I’ve had several siblings diagnosed with it as well. My mother had taken Fosamax for over 20 years so I tried that first but ended up with never-ending heartburn. After discussing my options with my endocrinologist, he suggested I try the Reclast infusion. After reading all the horror stories on here, I rescheduled the infusion 3 times before finally deciding it was my best option for now. I normally drink 60 + ounces of water every day so being hydrated wasn't an issue but to be extra sure I drank 96 ounces that day before my appointment and I brought my water bottle with me to the appointment and drank while the infusion was taking place. I also took two 500 milligrams of Tylenol 30 minutes before my appointment. The infusion was 20 minutes long and the flush was 5 minutes. I thought about asking for the infusion to be changed to 60 minutes but after the nurse stated he had not heard of patients having issues after the infusion, I decided to give the 20 minutes a try. That evening, I drank another 24 ounces of water and felt fine. The next morning, I felt a little off but decided this was the side effects of the medication. As the day wore on, I began to experience more and more flu-like symptoms (achy joints, headache, tiredness). I took ibuprofen about every 5 hours but that really didn’t help. Sunday morning, I was feeling a bit better but not 100%. By Sunday evening my joints were better, and my headache was improving but I was extremely tired. Today is Tuesday and other than being tired, I’m back to normal. I’m not sure I’ll do this infusion again. I feel like there must be better and more natural alternatives so I’m going to continue to do more research. Has anyone tried a natural remedy that they know works (i.e. your scan has shown improvements)?

@lindawickert your DEXA score is borderline at -2.5, , and you might benefit from Keith McCormick's book "Great Bones," which updates and expands on his first book, "A Holistic Approach to Osteoporosis." He also does consults in person or by phone and has videos online. He advocates for medication when needed but last time I looked his idea of when meds are needed may be around -3.3 DEXA if bone quality is good. Of course there are other ideas out there about when meds are needed! I have seen everything from medication for osteopenia to McCormick's -3.3 but it is an individual decision based on individual factors in consultation with a doctor you trust. These murky areas are hard!

Some on this forum are doing a trabecular bone score for bone quality and also using the FRAX score (you can look it up), I don't personally know much about these because my scores were a lot lower than yours and I have fractures so my bone quality was obvious!