Reclast Infusions: Side-effects & Recovery time

Posted by cindydee @cindydee, Mar 20, 2018

I just had a reclast infusion last week and have had serious side effects. I had the worst flue like aching for 5 days then my lefty arm became full of inflammation in the wrist, elbow and shoulder which caused extreme pain and I lost the ability to straighten my elbow. Ultrasound showed huge amounts of fluid throughout the arm. The right arm is now starting to have the same symptoms. The pain is excruciating. Has anyone else experienced anything like this? Neither the ER doctor nor the Dr. who prescribed the procedure knew what to do to ease the symptoms. Both arms from fingertips to shoulder are swollen and neither elbow will straighten. Anyone else have adverse reactions to the reclast infusion? If yes, how long did it last?

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Just want to be clear that my 4 days of fever were a fairly common, short-term result of Reclast and not really a longer term "side effect" for most of us. I am sorry for anyone having longer problems (and I do not know yet if I among those who do).

I read that 60% of people taking Reclast don't have the few days of fever/fluishness and if IV hydration and slow infusion with tylenol are used, one doctor wrote that < 1% do. I know many women who had no reaction at all.

We'll see what happens for me. I want to be able to share but I don't want to discourage anyone from taking it. I feel like we don't have much choice after the other drugs, all of which will have rebound without a bisphosphonate. I could not tolerate an oral and actually found my 20% 1mg dose fairly tolerable.. I repeat in 3 months, then in another 3 months do 2 or 3 mg and so on, gradually increasing.

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@lioness

@parrotqueen Cant wait to hear what you find out as my T score is 1.5 and am on the natural route . last August I did have another fracture so not lifting anymore . Have you researched the peanut oil ?

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Hi, Can you share what you did going the natural route? 1.5 is an incredible score - congratulations! Did you have a prior score?

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@windyshores

Just want to be clear that my 4 days of fever were a fairly common, short-term result of Reclast and not really a longer term "side effect" for most of us. I am sorry for anyone having longer problems (and I do not know yet if I among those who do).

I read that 60% of people taking Reclast don't have the few days of fever/fluishness and if IV hydration and slow infusion with tylenol are used, one doctor wrote that < 1% do. I know many women who had no reaction at all.

We'll see what happens for me. I want to be able to share but I don't want to discourage anyone from taking it. I feel like we don't have much choice after the other drugs, all of which will have rebound without a bisphosphonate. I could not tolerate an oral and actually found my 20% 1mg dose fairly tolerable.. I repeat in 3 months, then in another 3 months do 2 or 3 mg and so on, gradually increasing.

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I am so so sorry to hear that you had terrible side effects from your Reclast infusion. I have had Reclast infusions for the past 6 years and the only side effect I felt was fatigue for the first day. I am either lucky or wonder why you found your dosage intolerable. Did the doctor ever explain why?

Best wishes for feeling better!

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@susanjane77

I am so so sorry to hear that you had terrible side effects from your Reclast infusion. I have had Reclast infusions for the past 6 years and the only side effect I felt was fatigue for the first day. I am either lucky or wonder why you found your dosage intolerable. Did the doctor ever explain why?

Best wishes for feeling better!

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@susanjane77 I am sorry my post was not clear. My short term reaction to Reclast was not "terrible" or "intolerable" and I was trying to make that point. I expected to feel poorly for a few days. Up to 30% do. Small price to pay for someone who knows what fractures do. I am already planning my next infusion with my doctor.

Again,while I post about short term effects, I worry about people then feeling scared to take Reclast. That is not my intention at all. Reclast is the best way to lock in gains from other medications and stay safe. I am sorry if my post was misleading.

That said, sympathies to those who have longer term effects, which are rare but very difficult.

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@windyshores

@jeanniejacobs I totally get why it is comforting. I have unusual reactions to everything- medicines, foods, scents, flooring etc. etc. Yours is lasting a long time.

I am totally committed to osteoporosis treatments due to my horrible experience with fractures. But in your situation not sure what I would do. Have you tried any other medications? I was so grateful to get onto Tymlos (slowly) but had neuro sensation issues on Evenity. I will do more Reclast at low dose. This is okay, as long as it ends in a few days!

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windyshores,
How are you feeling this morning? (Sunday)

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@susanfalcon52

windyshores,
How are you feeling this morning? (Sunday)

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Temp was still a little elevated last night but this morning I feel fine (except I have lupus and was in the sun briefly yesterday!). Reclast reaction was 4 days, exactly as expected: only 3 days of strong effects.

I will definitely have another dose of Reclast. Three months from now another 1mg (20%) dose with a lot of IV hydration and very slow infusion (one hour for 1 mg), Three months after that I will try 2 or 3 mg, depending on how I do with the 1 mg. I appreciate my doctor's careful protocol.

He did not prescribe at all during my cancer treatment, which may have been a mistake in hindsight but at the time it was thought to increase my episodic afib. Doctors have to weigh a lot of health issues and sensitivities when prescribing for us!

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@windyshores

@susanjane77 I am sorry my post was not clear. My short term reaction to Reclast was not "terrible" or "intolerable" and I was trying to make that point. I expected to feel poorly for a few days. Up to 30% do. Small price to pay for someone who knows what fractures do. I am already planning my next infusion with my doctor.

Again,while I post about short term effects, I worry about people then feeling scared to take Reclast. That is not my intention at all. Reclast is the best way to lock in gains from other medications and stay safe. I am sorry if my post was misleading.

That said, sympathies to those who have longer term effects, which are rare but very difficult.

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My apologies for misunderstanding. I completely agree with you that Reclast should not feared and long term side effects are rare but do happen.

Wishing you the best of health!

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@windyshores

Temp was still a little elevated last night but this morning I feel fine (except I have lupus and was in the sun briefly yesterday!). Reclast reaction was 4 days, exactly as expected: only 3 days of strong effects.

I will definitely have another dose of Reclast. Three months from now another 1mg (20%) dose with a lot of IV hydration and very slow infusion (one hour for 1 mg), Three months after that I will try 2 or 3 mg, depending on how I do with the 1 mg. I appreciate my doctor's careful protocol.

He did not prescribe at all during my cancer treatment, which may have been a mistake in hindsight but at the time it was thought to increase my episodic afib. Doctors have to weigh a lot of health issues and sensitivities when prescribing for us!

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Windy. Good to hear you are feeling better after the Reclast. Would you be so kind as to explain what the 'rebound' looks like when the medication you were taking was a bone-builder (Evenity) rather than an anti-resorptive like Prolia?

Is it the same sort of 'rebound' associated with Prolia, which I understand is a surge of osteoclastic cell activity that overwhelms the efforts of osteoblasts? Or is there something about the term 'rebound' that I do not understand?

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@rjd

Windy. Good to hear you are feeling better after the Reclast. Would you be so kind as to explain what the 'rebound' looks like when the medication you were taking was a bone-builder (Evenity) rather than an anti-resorptive like Prolia?

Is it the same sort of 'rebound' associated with Prolia, which I understand is a surge of osteoclastic cell activity that overwhelms the efforts of osteoblasts? Or is there something about the term 'rebound' that I do not understand?

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@rjd I took Tymlos for two years and Evenity for 4 months. After either drug, I was told Reclast was necessary (I cannot take Fosamax due to GERD, and Reclast does a better job of coating the bones). The mechanism of "rebound" is not the same at all as with Prolia. In fact, though I have heard that term applied to all these situations, I would actually just say that without Reclast, I would lose my gains from the other two medications- I was told in two years. The term "rebound" is probably best used for Prolia discontinuation!

I honestly think that Evenity is too new for the doctors to really know, and more research needs to be done. Since it is anti-resoprtive, I have read they are looking into whether Evenity works without Reclast and also whether Evenity could be done for 6 months and Reclast could replace the last 6 months of Evenity. None of this is anywhere near clear yet>

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@windyshores

@rjd I took Tymlos for two years and Evenity for 4 months. After either drug, I was told Reclast was necessary (I cannot take Fosamax due to GERD, and Reclast does a better job of coating the bones). The mechanism of "rebound" is not the same at all as with Prolia. In fact, though I have heard that term applied to all these situations, I would actually just say that without Reclast, I would lose my gains from the other two medications- I was told in two years. The term "rebound" is probably best used for Prolia discontinuation!

I honestly think that Evenity is too new for the doctors to really know, and more research needs to be done. Since it is anti-resoprtive, I have read they are looking into whether Evenity works without Reclast and also whether Evenity could be done for 6 months and Reclast could replace the last 6 months of Evenity. None of this is anywhere near clear yet>

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Hi @windyshores very happy to hear that you are on your new leg of therapy and tolerated 1mg reclast well! Out of curiosity, did you have a dexa scan before your reclast infusion to assess the effect of 4 mo evenity (+a few months of tymlos)? Did you have your btms checked before (maybe after) reclast, even though your btms didn't appear to follow "normal" or average therapy trends? My apologies for the redundant questions as I may have missed many posts due to a long trip.

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