Reclast for Osteopenia Pros and Cons?

[Carolina]

My Rheumatologist has scheduled an infusion of Reclast for me, on September 14.  I have steroid induced Osteopenia.

I am VERY concerned about the horrific side effects that I might experience.  I'm not sure my Bone Density is really that bad to make it worth the risks.

Anyway have experience with Reclast?

Elaine

[Carolina]

I've cancelled an appointment for. a Reclast infusion for the second time.  I'm just so scared of the side effects that everyone gets....nevermind the necrosis of the jaw, and other joys.

Bumping this to the top.

Elaine

[meirish]

I understand your fears, Caroline. I have Stage 3B kidney disease plus osteoporosis and am told I need Prolia injections several times a year. I did do Reclast (I think) Iv many years ago but for some reason it was not continued. I have great issues with these drugs and have done a lot of research. This is my personal opinion so ho9pe others don't think I know it all.

I have a couple diseases that could end my life at any time so the thoughts of no osteoporosis med and falling and breaking a hip is not a fear producer for me. I know it could be fatal but there are a lot of ifs and maybes in life. My primary has accepted my decision since I made an informed decision. My rheumy has been pretty obnoxious. Told me it was my decisions but then later told me he wouldn't order my steroid drugs for me since I wont be taking the drug and steroids cause osteoporosis. He is a huge supporter of Prolia and I knew he would give me a hard time.

This is also the 4th rheumatologist I have gone to on a continual basis that has not been worth the money he is paid. Ten minute visits and he knows so little about me and his office calls are something else. I am really upset about doctors this week. Maybe next week I will be able to smile more. lol

So, "no" is my opinion to that or any osteoporosis drug. May live to regret it but time will tell. I am also to the point where I am going to be very choosy about any new drugs order for me. When I was working as a nurse in a nursing home a high school classmate had a gramma at the home. Gramma was 100 years old. The doctor saw her and decided to stop all her meds. She was quiet, deaf, talked little, comfortable, ate when fed. She lived 6 more years like that. Now, wonder who is in charge of when we live or die!!

So Caroline, I do believe you can do the research and make your informed decision. I have noted that many people who have taken one of these drugs complain of bone pain....this also concerns me. Good luck. meirish

[Kathy57]

Hello,

I haven't posted in awhile but I take Prolia cause I have Osteoporosis.  I had to stop taking the oral meds cause it was really bothering my sensitive stomache.  I have bad GERD and Barrettes Esophagus.

I have no issues with the Prolia.  My mom had a fractured hip and I don't want to end up like she did.  It runs in my family.  The last thing I need now is a broken bone.

I understand you need to do what is best for you.  It's not a "one size fits all". I do worry about the potential side effects but so far I'm not aware of experiencing any, other than my stomache couldn't tolerate the once per week med.

Have a Happy New Year!

Kathy

[Carolina]

Yes, Irish, it's my rheumy pushing the Reclast Infusion.  They run they're own infusion lab.  My rheumy doesn't think the oral medications are as effective.

I see them again the first week in February.   So I'll probably keep scheduling under some pressure and then cancel again.

I also agree with you Irish.....I have so many complicating factors, and a heart full of plaque and stents which I believe will be my exit ticket.

I'm already in a power chair and don't walk at all unsupported (my Immune Condition has attacked the organs and systems in my body but the worst is profound peripheral neuropathy with both legs and thighs atrophied severely.

So my osteopenia is low on my worry list!.  Course when I do break a hip, I will probably be sorry.  It's always something, that's for sure.  Things I never heard of are part of my life.

Elaine 

[meirish]

Kathy, I am glad that you are getting along well on the osteo drug. WE all have to make our own decisions which is the way it should be. Hope you are doing well. meirish


Caroline, Yes, it is hard to make decisions about all these meds. I guess I will have to find a new doctor.... I don't know if I will try to find a rheumy again. The area I have moved to is giving me so many issues with a couple of my meds. No one wants t o take responsibility for ordering my prednisone. For crying out loud, I have been on this for years. I can't take the Cellcept, Methotrexate, Imuran, etc for my autoimmune disease cause I always get an infection. So, prednisone is what they have been giving me. I am off the IVIG now so I imagine I could be much more uncomfortable if they would take prednisone away...plus I could get very ill. My immunologist told me to stay away from any of the immune suppressant drugs as I don't do well on them. Immunologist is retired about 4 years now and I can't find anyone to replace him. It will take about 4 specialists to replace him and I don't have the energy to run all over looking.

I apologize if I have a lot of typing errors. I have tried to clean them up. I have a pinched cervical C3 and told I need surgery to add to my fusion. I am losing the function in my hands in a few different ways plus have numbness in my fingers. Darn!!! I am going to have to think about this long and hard. My last cervical fusion was in 2017 and C4C5 and my neurosurgeon is exceptional. He says I will do fine. I was 75 years old then and now I am 81 and in worse health. It is also affecting my balance some and I think my walking is worse. But I can still drive and take in nourishment.

Hope you are hanging in their Caroline. We old Sjoggies just seem to keep on keeping on in spite of it all. Hope you can keep the pain under control. Take care to all of your folks. meirish

[Carolina]

I am hanging in here, Irish.  I had to cancel the last scheduled Reclast because I had an infection and was taking an antibiotic.

I had a blocked and infected Bartholin gland.  Honestly it never stops.

I also have problems typing now (typing is my life!) because my Small Fiber Neuropathy has made my finger tips and entire hands numb. 

Now I have severe pain in the my heels (also neuropathy) but it appears to be idiopathic.   It wakes me up several times a night.  Sigh.  I had a "wonderful time" in radiolology today while the tech figured out how to x-ray my feet when I cannot stand at all.   He did it!  But no solutions appeared for my pain.

I'm 82 now, and I cannot believe how what started as Sjogren's has blossomed into a complete circus.  Yesterday I had my four hour infusion of 50 gms of IgG.  Every four WEEKS my nurse comes and stays with me for the infusion.

I also had my third implant (tooth) and am having a crown replaced, just worn out. 

I am extraordinarily fortunate that my husband of almost 62 years helps me constantly, wheel chair in the back of the car, then out for me to go to the doctor, then into the back so we can go home, THEN out of the back so he can push me to our apartment.  I am very blessed.

Elaine