Reclast side effects

Yes 1 mg with one hour IV hydration and infusion of 1 mg over one hour with tylenol and I still had a fever for 5 days. I am quite sure spinal pain is worse. Some pins and needles in hands and feet. I am having another 1 mg next week and then meeting with doc about what to do next. I know he wants me on 2mg or 3mg in three months after the last 1 mg which brings me to 4-5mg for the year but I am going to discuss stopping if I have had enough to "lock in gains."

There is not long term plan for any of us as yet, at least not one approved in practice. If I could take a drug holiday I would do Tymlos after awhile. Another option if alternating Evenity and Reclast. I figure I have 15-20 years left. I want to see a clear plan for that but I doubt anyone knows.

My scores in spring 2022 after 18 months on Tymlos were -2.5 spine, -2.9 hip and -3.7 for femur neck as I remember. Dramatic improvements. I get my next DEXA this April. MY CTX is pretty low.

@gently I am moving and making so many typos! I just wanted to say that was one case which means it won't affect the course of treatment for any of us unfortunately. I think pharmacists know more about side effects sometimes.

Not sure what actual support (besides gee we are sorry) anyone can offer. There is on antidote. Physical therapy? Pain meds? Immune system testing?

Yes, I printed it out. Thank you for that. dingus

I have no idea of what support could be offered in the incidence of an adverse reaction (and that could vary with the reaction). The attidude when asked that question could be very revealing, however. Being brushed off is not acceptable to me.

@dingus I'm sorry for what has happened to you. I post info about possible ways to avoid the disastrous consequences of Reclast hoping it will help some (including myself) avoid a disaster. As for what to do once it has happened I haven't tried to investigate that yet. I agree that everyone who has suffered these long term side effects deserves to be listened to and helped.

As I said I haven't investigated the long term effects but I certainly haven't seen any proven remedy for recovering from that mentioned on any of the osteoporosis groups. Gently mentioned steroids which I don't know a great deal about. I would guess that unless someone comes up with something specific for Reclast recovery, that you are in the same boat as those with chronic fatigue syndrome, Gulf War Syndrome, environmental illness (food and chemical sensitivities), long covid and so on. Long Covid has gotten more official recognition that those other conditions so maybe there will be some useful knowledge that will emerge from those studying and dealing with it. Those with these conditions are often ignored and sometimes thought to be complainers and maybe just a bit nuts. I've had extreme food and chemical sensitivities for 40 plus years and there were no "answers" for me. I have improved and can enjoy my life now but the over reactivity is still there, just more manageable.

But some people do recover completely from these little recognized long term conditions and you may also. Certainly it can get better. Reading about these similar conditions-situations might help you find things to help you improve and help with how to approach the problem. Best of luck to you.

windyshores, I hope you found a really great place.
I agree with almost everything you've written, even about the typo. They don't confuse me because I make them all the time myself.
Knowlege of this one case may affect the course of treatment for one person. That's all that matters to me.
It won't help you and it won't help me. It won't help any of the many who have no immune reaction to Reclast.
There is a slim, slim chance that it will help a physician recognize cytokine storm, and an even slimmer chance that a patient down line will benefit. But if the one person that I'm responding to finds enough energy in this glimmer of hope to find a good immunologist, all is well.

@windyshores If your CTX is low maybe you don't need another dose yet? Or you could do an even smaller dose. It's quite amazing (in a scary way) that you had a strong reaction even at a very careful 1 mg dose. I know you are perhaps extra sensitive but I think it still shows what terrible overkill it is to give 5 mg doses as the standard. Plenty of people are quite reactive to medications even if they appear to be quite normal and healthy. Sorry for preaching to the choir here.

Your numbers look great. You have me beat all the way around. And if your CTX is low you are probably having a good response. (how low) Assuming you'll redo CTX before the infusion to see if you need it. And if you don't, repeat CTX until you do?
I have 30 years left how come you're checking out so early.

@genlty again lol

@gently Thanks for that paper. Your comment about the patient being at a teaching hospital in the just the right circumstances may be the only reason we have even this one bit of formal recognition of a serious problem with Reclast. I even wonder if they had not found at least one marker (the ESR) that they would have even produced the paper. There are many conditions where it is very difficult to find any blood marker indicating the condition. For my food and chemical sensitivities there were not any markers. I guess most researchers don't want to produce a paper saying sorry reviewers we know it happens but it's just a mystery and we cannot prove it.
Oh, one thing about the paper is that they say this is so rare as they could find only two other similar reports. Well all one has to do is look at osteoporosis forums to see that this is happening all the time. What a strange disconnect between doctors/academia/research and us folks who have osteoporosis.