1. < Osteoporosis & Bone Health
Mentor

Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

lilypaws | @lilypaws | Jul 25, 2020
In reply to @contentandwell "@colleenyoung and others, I am still not on anything. This is such a difficult decision. I..." + (show)
@contentandwell

@colleenyoung and others,
I am still not on anything. This is such a difficult decision. I have a new DEXA scheduled in October and appointments with the endocrinologist that I went to last year who recommended Reclast and am also trying to make an appointment with the endocrinologist I see for diabetes and hypothyroidism so I can get a second opinion. Both of them are very highly regarded. I am having so much trouble making that appointment though that I'm getting paranoid!

As it is I am exercising, doing weight-bearing exercises along with others, (balance, core, cardio), taking calcium, vitamins D and K. I am scared to death about the medications though. I have a history of having problems with medications. I had to be changed from tacrolimus, the 1st medicine of choice for liver transplant patients, to sirolimus due to problems. When I was on a BP medication a number of years ago I had problems and had to be switched, and recently I had to discontinue a cholesterol medication due to problems. You probably think that it's all in my mind, but actually I never read the side-effects! I went to my doctor for constant cough after she put me on lisinopril and she immediately knew that was the cause, and I was having terrible pains in my legs and a friend asked me if I was on a cholesterol drug, which I was! Who would think that a BP med could cause a cough and that a cholesterol med could cause muscle pains? I also have had problems with some PPIs and with a medication that I was given prior to transplant that that made me sick for two days. So, you can see my reluctance to start on a medication with such serious, well-known side-effects. I still do not know what I will do, I need to do a lot more research before I made a decision but I don't retain medical info well so I want to do it a bit closer to my appointments.

I am trying to follow these discussions to gain as much knowledge as possible to help me with this decision. Right now I am favoring Tymlos for starters.
JK

Jump to this post

@contentandwell You have been through so much. I'm proud of you that you still exercise. I don't know anything about reclast, because I'm still on Tymlos. I am the one who had that 9 hour back fusion. After listening to all your problems makes me feel not so bad about what I'm going through. The cholesterol medicine I am on is Rosuvastatin Calcium 10 mg. It doesn't cause any side effects. Other ones I have been on caused me to ache all over. Having a transplant must not be easy. Yes, I like Tymlos, but inject it at night cause it can cause fatigue. I have to use it for 2 years and then go on something else for my bones. The only problem I have is my right foot that is shorter than the left leg and my surgeon suggested getting 1/4 in lift. I'm not going for walk till I get the lift. My right knee hurts and I have spasms in my right foot. I hope all goes better for you. With me having anxeity and depression things are harder for now.
Bless your heart hand in there.

REPLY
1 reply
JK | @contentandwell | Jul 25, 2020
In reply to @lilypaws "@contentandwell You have been through so much. I'm proud of you that you still exercise. I..." + (show)
@lilypaws

@contentandwell You have been through so much. I'm proud of you that you still exercise. I don't know anything about reclast, because I'm still on Tymlos. I am the one who had that 9 hour back fusion. After listening to all your problems makes me feel not so bad about what I'm going through. The cholesterol medicine I am on is Rosuvastatin Calcium 10 mg. It doesn't cause any side effects. Other ones I have been on caused me to ache all over. Having a transplant must not be easy. Yes, I like Tymlos, but inject it at night cause it can cause fatigue. I have to use it for 2 years and then go on something else for my bones. The only problem I have is my right foot that is shorter than the left leg and my surgeon suggested getting 1/4 in lift. I'm not going for walk till I get the lift. My right knee hurts and I have spasms in my right foot. I hope all goes better for you. With me having anxeity and depression things are harder for now.
Bless your heart hand in there.

Jump to this post

Thanks, @lilypaws Of course I remember that you went through that back fusion. Although I have not recently been very active on Connect I did follow that.

Thanks for the info on Rosuvastatin Calcium 10 mg, I will have to ask my endocrinologist about that. For some reason my PCP left the prescribing of a cholesterol medication up to him.

My litany of problems sounds worse than they are actually. Pre-transplant I was very good up until the end when things went downhill. My transplant recovery was amazing, even the transplant team was surprised at how quickly I was doing well. As I mentioned in a different message I think, my old PCP felt all I did pre-transplant was why I did so well after transplant. Maybe, but I think he gives me too much credit. I always think of myself as being very healthy and then I remember all the things that wrong with me! Right now I am doing pretty well other than sporadic depression when I think of how much longer we will be stuck isolating and wondering when if ever I will see my son again. My daughter is planning to self-isolate going into August so we can spend time together. She and her husband can drive here, no need to be on an airplane.

I was still having knee and hip problems from walking longish distances but I am using Voltaren (a gel) two times a day. The recommended is three times a day but I never get a third time in. Even so, I am finding this helped.
JK

REPLY
2 replies
lilypaws | @lilypaws | Jul 25, 2020
In reply to @contentandwell "@colleenyoung and others, I am still not on anything. This is such a difficult decision. I..." + (show)
@contentandwell

@colleenyoung and others,
I am still not on anything. This is such a difficult decision. I have a new DEXA scheduled in October and appointments with the endocrinologist that I went to last year who recommended Reclast and am also trying to make an appointment with the endocrinologist I see for diabetes and hypothyroidism so I can get a second opinion. Both of them are very highly regarded. I am having so much trouble making that appointment though that I'm getting paranoid!

As it is I am exercising, doing weight-bearing exercises along with others, (balance, core, cardio), taking calcium, vitamins D and K. I am scared to death about the medications though. I have a history of having problems with medications. I had to be changed from tacrolimus, the 1st medicine of choice for liver transplant patients, to sirolimus due to problems. When I was on a BP medication a number of years ago I had problems and had to be switched, and recently I had to discontinue a cholesterol medication due to problems. You probably think that it's all in my mind, but actually I never read the side-effects! I went to my doctor for constant cough after she put me on lisinopril and she immediately knew that was the cause, and I was having terrible pains in my legs and a friend asked me if I was on a cholesterol drug, which I was! Who would think that a BP med could cause a cough and that a cholesterol med could cause muscle pains? I also have had problems with some PPIs and with a medication that I was given prior to transplant that that made me sick for two days. So, you can see my reluctance to start on a medication with such serious, well-known side-effects. I still do not know what I will do, I need to do a lot more research before I made a decision but I don't retain medical info well so I want to do it a bit closer to my appointments.

I am trying to follow these discussions to gain as much knowledge as possible to help me with this decision. Right now I am favoring Tymlos for starters.
JK

Jump to this post

@contentandwell I think I posted something on the other post. You have been through so much that I don't feel bad about what I'm gong through. Take care of yourself. My thoughts and prays and with you.

REPLY
1 reply
JK | @contentandwell | Jul 25, 2020
In reply to @lilypaws "@contentandwell I think I posted something on the other post. You have been through so much..." + (show)
@lilypaws

@contentandwell I think I posted something on the other post. You have been through so much that I don't feel bad about what I'm gong through. Take care of yourself. My thoughts and prays and with you.

Jump to this post

Thanks again, @lilypaws I truly appreciate your thoughts but I don't dwell on the problems and I consider myself to be healthy. My biggest problem, to me, is my hearing disability. That can be very isolating in groups which leads to depression. Most of the time I am OK with it. I can hear with my hearing aids but it has to be clear. In a group or in a restaurant it is very difficult though.
JK

REPLY
lioness | @lioness | Sep 16, 2020

@becsbuddy I just broke down.after a year and had Reclast I didn't have any side effects

REPLY
fiesty76 | @fiesty76 | Sep 19, 2020

@becsbuddy, I was diagnosed with osteopenia and osteoporosis several, several yrs ago...taken Fosomax, Forteo, and others before starting Reclast three years ago. Absolutely No side effects for me. Also, because of stage 3 CKD diagnosis a yr ago, I checked with doc before last summer Reclast infusion...was ok to proceed. The very good news for me was that the 1st two yrs ff Reclast, my numbers improved! Last yr, values stayed constant...no drop nor improvement. Told the goal from the beginning with Reclast was to "maintain my bone density" ...so glad, too, to see this post Because, while I've had the Dexa scan required each yr before infusion, I haven't yet heard from office for infusion date...(lag to hear approval from ins/medicare) Short term memory issues! ....a different issue for another day, yes??? vbg

REPLY
1 reply
julie2020 | @julie2020 | Sep 19, 2020
In reply to @fiesty76 "@becsbuddy, I was diagnosed with osteopenia and osteoporosis several, several yrs ago...taken Fosomax, Forteo, and others..." + (show)
@fiesty76

@becsbuddy, I was diagnosed with osteopenia and osteoporosis several, several yrs ago...taken Fosomax, Forteo, and others before starting Reclast three years ago. Absolutely No side effects for me. Also, because of stage 3 CKD diagnosis a yr ago, I checked with doc before last summer Reclast infusion...was ok to proceed. The very good news for me was that the 1st two yrs ff Reclast, my numbers improved! Last yr, values stayed constant...no drop nor improvement. Told the goal from the beginning with Reclast was to "maintain my bone density" ...so glad, too, to see this post Because, while I've had the Dexa scan required each yr before infusion, I haven't yet heard from office for infusion date...(lag to hear approval from ins/medicare) Short term memory issues! ....a different issue for another day, yes??? vbg

Jump to this post

What was your experience with Forteo?

REPLY
1 reply
allo | @allo | Sep 19, 2020

I have taken Forteo for the past 20 months and have not had any problems.

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 19, 2020
In reply to @allo "I have taken Forteo for the past 20 months and have not had any problems." + (show)
@allo

I have taken Forteo for the past 20 months and have not had any problems.

Jump to this post

Thank you, wow, that's so great to hear! I'm not sure how long one has to stay on Forteo but I do know that if some of them are stopped early, the risk of fracture actually increases. Clearly that must not be for Forteo.
Warm regards, Sunnyflower. 😊

REPLY
View MoreView Less
Please sign in or register to post a reply.