Reclast experience sucks so far.

Posted by neesie0159 @neesie0159, Sep 11 1:24pm

As brief background I was diagnosed in my 40’s (now 67) I took Actonel for years, developed GI issues and was told to just do calcium/D. Fast forward to 2018 and a fracture of L4. Found out my spine was -4.something. Started on Fosamax, I was afraid of Prolia.
FFW again, I did a year of Evenity with great results, spine went to -3. The plan was 4 Prolia injections followed by Reclast. Zero side effects with Prolia, Evenity just had sore arms afterwards. No improvement at all on Prolia. I did as much prep as I could for generic Reclast—hydration, tylenol, claritin, had it given over an hour ( despite my former provider not ordering it that way like they agreed to). I got it Tuesday afternoon. First 24 hours no issues at all, then gradually increasing temperature up to 100.8 and felt like total crap. Better yesterday morning, just tired. Woke up 2:30 a.m. today with severe pain in hips and legs. I have chronic back pain and can sleep through mild to moderate pain, this I couldn’t. It’s a lot better since getting up, but random pain in my feet/ankles/shins/knees. Lying on my bed with cat and heating pad, terrified that this will be long lasting. I will be looking at alternatives after this, I think.

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lululinks | @lululinks | Sep 15 5:04am

Sorry to hear about all you're going through. I had 2 infusions of Reclast. It did help me.....BUT....never again....RECLAST IS THE DEVIL......2 infusion was so bad I couldn't even walk, no strength, plus many other side effects. To me it's not worth taking...

neesie0159 | @neesie0159 | Sep 15 6:47am

In reply to @gently "@neesie0159 it is only five months to January. Is there an Advantage to not having original..." + (show)

@gently I got original Medicare years ago when I got disability, I was married and also had my now ex’s insurance. When I divorced him I got an advantage plan because I couldn’t afford premiums for a supplemental plan and a drug coverage plan ( I have a lot of meds). To go back to original Medicare I would have to go through medical underwriting for a supplemental and they could deny me. Our healthcare system sucks.

neesie0159 | @neesie0159 | Sep 15 4:56pm

In reply to @gently "nessie, I'm so glad you are feeling better. There is hope for better medications and already..." + (show)

@gently I am still having the thumb/wrist pain that started Sunday night. I can’t do anything requiring gripping or pulling with my thumbs without significant pain. Messaged my doctor yesterday for advice and was just told to take Tylenol ( less than I am already taking) and try warm compresses. It was pretty awful this morning so I messaged again to clarify that Tylenol doesn’t touch it and that I was considering going to urgent care. No reply yet, I will give it until tomorrow.

gently | @gently | Sep 15 5:47pm

nessie0159, I see chiropractors and they adjust my thumbs and my wrists. It seems a little crazy, but it provides immediate relief for me. If you did decide to go you might let them adjust everything because I always feel better even in places that weren't even a problem. You might call the doctor and ask them to order an x-ray of your hands. Is it both thumbs. My dad was having that unable to grip pain with his thumbs. After he saw the chiropractor, he never had the pain again. I can use mine but they get a little uncomfortable sometimes. I like chiropractors because usually you can see them same day.
If it's both thumbs you might ask for a serum draw for rheumatoid factor.
Tylenol, for heavens sake
If you end up at urgent care, you might ask straight up for the x-ray and the blood draw.
Have you been doing a lot of work with your hands.
Some people have gout in their thumbs; the joints get offset in mine and I can't do any gripping or pulling and nothing requiring that opposing thumb, my sister has rheumatoid arthritis first evident in her thumbs.
There is really almost nothing that you can do without those thumbs.

neesie0159 | @neesie0159 | Sep 15 8:45pm

In reply to @gently "nessie0159, I see chiropractors and they adjust my thumbs and my wrists. It seems a little..." + (show)

@gently I have had pain in my atms before but never in my hands that I recall. It started with my left hand and within a couple of hours was in my right as well. I haven’t done anything out of the ordinary that would strain my thumbs. My pinky fingers are also somewhat swollen as of this morning. Endo doc thought it was part of the Reclast acute phase reaction and will go away, though it started on day 5 after the infusion. I have come across people on forums who have had joint pain show up days or weeks after the infusion, apparently that’s rare but does happen. If I could go back in time to after I finished Evenity, I would have insisted on going on Fosamax instead of Prolia, as I tolerated it fine. After Prolia I felt like Reclast was the best choice to prevent rebound bone loss, so I felt stuck with it.

lettiemayo92 | @lettiemayo92 | Sep 27 8:51pm

Took Reclast infusion. First year, a nightmare of flu-like aches and pains in every joint in my body for a week. Couldn't get out of bed for three days. I begged my doc for steroids, but "no go." Second year, it was administered twice as slow, and I took twice as much Tylenol beforehand. No pain at all, none whatsoever! I couldn't believe it. I thought they may have forgot the med in the infusion. Go figure.

gently | @gently | Sep 27 9:33pm

lettie, do you know how long the second infusion was 30 minutes? Thanks for your post

lettiemayo92 | @lettiemayo92 | Sep 28 7:12pm

In reply to @gently "lettie, do you know how long the second infusion was 30 minutes? Thanks for your post" + (show)

@gently at least 30 minutes, more like 40

sl303 | @sl303 | Oct 1 4:39pm

In reply to @laura1961 "I stopped all meds over 30 years ago when I was diagnosed with Osteoporosis at 30...." + (show)

@laura1961 just wanted to make sure you knew there ARE PTs in the US that are certified in the program Here is the website for the map of same. But what I found out last year is the map is a little delayed - I didn't know there were 3 PTs in the DC area - a place I had considered moving back to and did not, this might have changed plan - and when I talked to one he said he was certified in August but hadn't got on the map til December That you have to ask So it might be worth calling around to see if any offer the program The people in Australia seem to be working hard to promote it here https://theboneclinic.com.au/onero/ https://onero.academy/locations/ also that PT Marge Bissinger has a good youtube podcast on Onero because there are actually two places in her home state of NJ

md2026 | @md2026 | Oct 7 12:30pm

In reply to @neesie0159 "@gently I am still having the thumb/wrist pain that started Sunday night. I can’t do anything..." + (show)

@neesie0159 Do you feel better now? I just finished my 4th shot of Prolia, and I plan to have my 1st shot of Reclast at the end of next March. I have an international trip scheduled for the beginning of May. I am concerned about the side effects of Reclast and want to make sure they won't interfere with my ability to travel.