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Reclast Infusions: Side-effects & Recovery time
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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Yes, frustrating not to have more answers but I found this (eventually!) helpful: Kept asking the endocrinologist I came to after my osteoporosis finding (no broken bones or other known issues) "but what about after... " questions (this after a year of Evenity and just now Reclast). It took me a few times until his response finally registered: that the research on osteoporosis treatments is developing so rapidly that we can't know what things will look like in the coming years / can't predict now what will be best to do in different situations. (And I'd add that things I would think can only improve....)
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1 Reaction@normahorn my endo just wrote me that my CTX of 145 shows that Reclast is suppressing my bone turnover. He forgot that I had only 1 mg in June and 1mg in September and none since so I reminded him and asked if I could delay any further infusions until monitoring shows it is needed. I mentioned that his colleague has said that it is possible only 2 mg/year might be effective. (I remember McCormick said any CTX< 100 is over suppression).
We'll see what my doc says. He normally doesn't do CTX. I fear being a PIA but I have to take care of myself. I try to be humorous with him.
I said I was "eager" to talk and want to ask about more Tymlos/Forteo, or maybe 4 months Evenity then some Reclast then another 4 months Evenity then Reclast. Or whatever his research is showing.
That approach of waiting for the CTX to show need seems to me to be so logical. I recently needed a mild pain medication. Thankfully the dentist prescribed Tylenol 3 and not something 10 times stronger than what I needed. Treat to the need.
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2 ReactionsThis past Friday I had my first round of Recast infusion due to severe osteoporosis. I was concerned about the side effects but assured by both my endocrinologist and the nurse who administered the IV that the most common side effects were mild flu like symptoms- some nausea, fever, body aches etc. I thought it would be no big deal and was something I could handle. I felt nothing Friday afternoon or evening, however at 3:00 am Saturday morning I had the most excruciating pain through out my body-legs, arms, shoulders, could barely walk and had a headache worse than anything I've ever experienced. The past three days I could do nothing but sit and rest and take extra strength Tylenol every 4 hours to help relieve the pain. Today I am a bit better but now I also have a horrible stiff neck and some itching. Could this also be related to Recast? Who knows! But this experience tells me I will not be doing Recast again next year. I called my endocrinologist today to discuss what happened to me but so far I have not received a call back.
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1 Reaction@smiles349 I expected to be sick after my first infusion. The "acute phase reaction" is common with the first dose. This can last up to two weeks (for me it was 8 days). It is unlikely to happen again.
It helps to hydrate and have a slow infusion. Hope you feel better, that this becomes clear as the "acute phase reaction" and not a long term side effect, so you can maybe do more. Let us know!
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1 ReactionI am not in favor of sloughing off "most excruciating pain through out my body-legs, arms, shoulders, could barely walk and had a headache worse than anything I've ever experienced" as a nuisance acute phase reaction. For me, that headache would mean an ambulance ride to a hospital as it could mean my brain aneurysm ruptured. Not being able to walk is not acceptable either.
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1 ReactionWorst pain I ever had in my spine
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1 ReactionNoone said the acute phase reaction is a "nuisance." Mine was pretty severe even on a limited dose. It is, however, not a long term effect for many and tends to happen once, with the first infusion. I would like to know if the symptoms described continue past a couple of weeks so as to know if those symptoms can happen long term.
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1 ReactionYes, the stiff neck can be from Reclast. I had that but it went away by about day 5-6. Just kept alternating Tylenol and advil until it was gone. Then I felt fine. The first week reaction is common.
I had my first infusion on Halloween. I felt good the first day and was in bed for a full 3 days following with chills, sore neck, and basic muscle aches. I have lower back problems anyway, so figured that was part of muscle aches. I then got a bad headache, which lasted for about 3 more days. I messaged the nurse and told them I was religious about the Tylenol that they suggested. It is worthless for me, and did not work on the headache at all. The doctor told me to quit the Tylenol and that I could take an Aleve. That worked a bit. In a week, most of the symptoms went away, except the neck ache (I took Tramadol). I still have neck pain today but had an x-ray the other day and it was seen that I have arthritis in C-7. I still will get a Bone Density test in a year, and repeat if I see any good results. Don't give up....