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Does anyone have a solution to help manage Reclast side effects?
Osteoporosis & Bone Health | Last Active: 1 day ago | Replies (707)Comment receiving replies
@normajean77 I had a reclassified infusion in August I had the infusion at 8:00 am and at 7:00 that same evening I didn’t feel the best so I layed down and within minutes I hurt so bad I had to get up got to the stairs and had to ride my moms chair lift down. My daughter had to call the ambulance because I couldn’t stand or walk. I was in the hospital for 3 days went for a follow up with my doctor and she didn’t know anything about the severe side effects. I called the doctor that prescribed the infusion and he had his nurse call me and question how severe my pain really was. I told her it felt like death and I would let my bones deteriorate before I ever had it again. I still have pain from it and it sucks!! When will it go away? When the drug is out of my system? Or is it just going to keep happening?
Replies to "@normajean77 I had a reclassified infusion in August I had the infusion at 8:00 am and..."
@lo62 I’m curious, how long has it been since you had your infusion? I did speak with an Endocrinologist pharmacist and he shared that it remains in one’s system for around 18 months. It has been 18 months for me. The pain level was a 10+; 18 months later, most days it is maybe a 2. However, once in a while the level spikes at maybe a 3. The 3 is not life threatening; more of a stressor. I just hope the day comes that the side effects are gone!
@lo62 I agree it has to be reported and your prescribingdoctor should be helping you through this an manufacturer needs to be notified. Let me tell you that my experience was exactly the same! But it resolved after five days. The way I look at it is that my body needed the medication my bones needed the medication. And I think that is a possibility here-– that your body is in need of what the medication is doing and that’s the side effects that you are experiencing. I myself will go back for the injection when I finish the TYMLOS. They are going to do the infusion very differently. They are going to slow the infusion down. They’re going to use a smaller dose and I’m going to go in having flush fluids and taking Tylenol before the injections. There are very small amount of us that have severe side effects the first time. It’s something like a 10th of a percent. And we show up here on this site to share our stories. When we go back for the second one it’s like . 1 hundredth of a percent with side effects that are not as severe. I will tell you that my side effects were in areas where my bones were as thin as paper so that’s why I correlated my need for the medicine to the side effects I had. So I won’t be giving it up, but I will be figuring out ways to diminish the side effects. And I’m sorry you had to experience this and I’m sorry I had to experience this. And if your doctors aren’t working with you, I encourage you to find somebody who will. I had a scream and shout a lot. (will not scream and shout) but I definitely had to advocate to get the attention I needed. I was appalled at how I was dismissed.
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@lo62
The only thing I've heard of working is steroid. https://pmc.ncbi.nlm.nih.gov/articles/PMC12121932/
"Following the resolution of her symptoms with prednisone, the patient did not experience a recurrence of severe arthralgia or systemic inflammatory symptoms."
In earlier cases IV steroid we seen to be more quickly effective.
You might ask the prescribing doctor for a five day taper or the IV. ( I mean that I would and i wouldn't wait. I'd insist on the IV Steroid with ASAP scheduling) If the doctor isn't responsive you might try one of those corner clinics or your primary care.
Steroids are hard on bone density, but a long term inflammatory response is said to be even more destructive.
I'm sorry you are suffering.