Mayo Clinic Connect
I had prolia injection a week ago. I've developed lower back pain and severe spasms. The spasms are so bad I can hardly get out of bed or even out of a chair. Is there anything I can do or take to alleviate this awful pain.
Liked by Dee, JK, alumni mentor, Chris Trout, Volunteer Mentor, Merry, Volunteer Mentor ... see all
@sue225 I became very sick for about ten days and initially thought I had a bacterial infection related to my bronchiectasis. Muscle and joint pain followed, persisting for a few months. I had previously been on Prolia and had taken a year holiday to give my body a rest from the medications (and returned to osteoporosis levels). So, I saw a new endocrinologist at Mayo (my previous provider had retired locally) and we had decided to return to Prolia as it had worked well for me. Then, fast forward six months and I fell down some stairs and broke my foot (which involved a long recovery process). The doctor switched my medication to Tymlos for bone building and I initially tolerated it but slowly I began suffering ever increasing leg pain. So, now it’s back to Prolia. I am not considering discontinuing it as I have been on and off these medications and I have not been able to maintain healthy bone density without them. I hope this helps.
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@migizii thanks for sharing your experience with Reclast. I have had good results according to the dexa scan which I had after a year and a half of being on Prolia. Very good results. You need to know one very important thing about Prolia. If you stop Prolia after having had about three injections (one is okay), you risk getting vertebral compression fractures up to two years after stopping if you do not start another osteoporosis medication. This is referred to as a "relay" drug. Amgen tells you this in their information pamphlet to both patients and doctors and doctors sometimes neglect mentioning this little detail. Drug holidays from Prolia are no longer recommended.
In my particular situation it's a bit like (if you'll forgive the expression) "damned if you do, and damned if you don't. (Maybe). To date, I have not had fractures.
Very sorry to hear about your foot and the long recovery process. I wish you good health. It's a leap of faith with these meds.
Liked by JK, alumni mentor, Chris Trout, Volunteer Mentor
I'm going to ask my infectious disease doctor if it is safe to get a DEXA scan now (I don't have an immune system – so she has me staying home) – I've been doing supplements for a while now and I should be good to test – see if I've made an improvement. I stopped fracturing – so there is that. I will absolutely never take the "bone building" drugs like Prolia or Relcast or Tymlos. Never going to happen. I know too many doctors and scientists who have told me the truth about those drugs. It took years for me to get into this shape – so it will take a while to correct – but I'm on my way. Happy Memorial Day weekend to everyone here.
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@parrotqueen I hope she gives you the go ahead but with the Memorial day weekend and being so open now dont bet on it . I,ll wait but am anxious to hear from you on this
Liked by JK, alumni mentor
I wish you luck with your supplements, @parrotqueen. I know how opposed you are to osteoporosis drugs but they do help many people. I think everyone really needs to research this themself and decide what is best for them.
I have gone a long time since my last DEXA at this point. I was supposed to start a drug by now but due to circumstances have not. I have been doing calcium and vitamin D but not boron, which is somewhat controversial from what I have read.
If you do not have confidence in your doctor and don't feel you can trust that doctor to try to do what is best for you, then it's time to find another doctor. I believe it's also very helpful to get more than one opinion in anything other than the most basic things.
Liked by lioness
Oh JK! I have so many doctors on my team! Sadly, my internist retired and I'm breaking in a new one. I have at least six doctors I see on a regular basis and they all know about one another. My neurosurgeon/endocrinologist and infectious disease doctors talk straight with me. And one of my best friends is a doctor (and Nobel Prize in chemistry winner) and we talk a lot. I've been very lucky to work with doctors and scientists my entire life. But even my favorite, most knowledgable doctor made a huge mistake two years ago and prescribed a drug in a category I had warned her I could not tolerate. Antidepressants make me hypomanic (No, I'm not bipolar – but certain drugs can cause a person to become hypomanic). I got down to 90 pounds and charged over $43,000! I live on Social Security! I cannot possibly afford to pay this huge sum back. It took me a year and a half to discover that it was the drug she was giving me for sleep (trazodone). I had taken it for 15 years with no problem, but when I was going through a stressful time, she told me to double the dose. So I trust no doctor – I always do my own research. I know she feels very bad about the mistake – but it made me realize you cannot trust anybody – you have to do your homework.
Also JK, you might want to check into Vitamin K2. I wish I'd remembered to make a note of where I read this – but they have found that vitamin K2 does help people hang on to their bones – and gave a small improvement in people with osteoporosis. I'll take any improvement I can get. The main thing K2 does is make sure calcium goes to the bones, not to the arteries or kidneys. This is a fabulous, easy to understand article about K2 for anybody that hasn't read up about it yet: https://chrismasterjohnphd.com/blog/2016/12/09/the-ultimate-vitamin-k2-resource. I also take probiotics and I do not eat any sugar at all (I don't even eat much fruit – just a few berries now and again – and I avoid high sugar vegetables). Sugar is very bad for those bones.
You are so right – everybody needs to do their own research. But also, don't take anybody else's word for anything – don't just listen to what your doctor says and think you have done your research. Doctors do not know that much about nutrition as a general rule. Consult a nutritionist or read some books, medical journal submissions, etc. I have given out the address for ConsuemrLab.com here before and the moderators allowed it. It is a consumer watchdog group for supplements. They test all the supplements they can to be sure they are what they say they are, at the strength they advertise on the label, and that they can be absorbed by the body. They also have a ton of research papers you can read on all the supplements. Probably more information than you want! Membership is about $37 a year I think. It is worth its weight in gold.
To be fair to doctors: They have enormous caseloads and every person's body is different. There are a lot of diseases out there to keep track of – and new ones popping up all the time. They don't have all that much time to do research. You have to learn about your own body – what feels good and what doesn't – what seems to help. I have been doing this for years. I had a horrible, incurable skin disease – hidradenitis suppurativa. OMG It was horrible. Then one day, a guy from India came into our support group and said turmeric would stop it – and that was that! So truly, know your body and do research and never stop learning.
@parrotqueen Darn sugar has ti be bad fir you. I hava heard this before. Growing up as 1/2 Danish and on a farm, seems like I grew up on sugar. I don't eat as much of it now. But, I do crave it. My last Dex was ostseopenia, but parts of me were low, so now I am on Tymlos my help my bones to become stronger. I have had to do the injection for 6 weeks before my surgery. They said I needed to do it for 2 years, but my endocrinologist told me I should just take it till my surgery heals. Then they will put me on another one, I suspect oral I hope. My stomach is aching from the injections and I have gained 11 lb, which the endocrinologist said is from the Tymlos and I can stop it for 2 weeks if it's ok with my surgeon. My surgery is June 9th. I can hardly wait. I will probley sp have more pain, but at least I will have pain pills to take, Percadan, Tramadol, and Valium. My spelling has been bad since I'm on the Tymlos it does make you tired, but I was tired before because of the pain. Thanks for your advice. We do have to be careful with natural meds, some do not go with an antidepressant if you are on one.
Liked by parrotqueen
I'm so sorry – the address for ConsumerLab.com was misspelled in my post. This is the correct spelling… I was so tired last night. I will say prayers that your surgery goes well lilypaws. One of my friends just had the most extensive back surgery – she is so happy to be on the other side of it – but she will have to have another for her lower back when she heals from this surgery. They had to fuse her entire back. She found sleeping in a recliner was easier than lying flat – so if you can get your hands on a recliner, it might help. you. You will know when the time comes.
Thank you for the information. I won’t be taking another holiday, but I was younger and tired of taking a number of medications, thinking one year wouldn’t have a significant impact. My doctor tried to warn me, but I didn’t listen. This did not impact my foot fracture as I did that many years ago (I’ve had osteoporosis since age 47 and I’m 65 now). The tricky part will be the long term care given the drugs I’ve taken; bad reactions; etc…..
Liked by sue225, parrotqueen
We're the same age. At 47, I had osteopenia and by my early 50's osteoporosis. I kept saying no to medication until two years ago. My numbers just kept getting lower and lower. I think its tricky business for many of us.
Liked by migizii, parrotqueen
I'm so sorry Sue. I also had osteopenia in my early 40s (and ignored the doctors – well, to be fair, I had some more serious health problems) and I'm 69 now with a DEXA of -5.7. But I did so many things wrong – chief among them was a life-long two six-pack a day habit of Diet Pepsi. I had a pituitary tumor that also robbed me of key hormones: Human Growth Hormone, adrenal, thyroid, ect. And menopause dealt the final blow. The pituitary tumor had me bedridden for ten years – as all the muscles wasted out of my body while I waited to be diagnosed – and being inactive didn't help. It got so bad, I was on a ventilator! I wish you all the luck getting your bones built back up. I promise to post. my DEXA score once I am cleared to go get one – and then I'll know if supplements and exercise work. This is such a rotten problem to have and I think if it happened to men more often, we would know more about it! I honestly don't think anybody has found the key to stopping this and building up our bones safely – but it's a problem we need a cure for desperately. I remember when I was 20, there was a little boy that lived next door that had a terrible case of osteoporosis and he was only ten years old! That was 1970! He'd be out riding his bicycle one day – and in a cast the next. I wish us all good luck. I hope everybody will post what has worked for them so we can all learn. Again, I recommend a Facebook group called Osteoporosis Natural Remedies. It's a fairly active group – some days I can't keep up with all the posts.
@parrotqueen That 10 year old boy probably actually had brittle bone disease. A boy we knew who was around my son's age had that, it was very debilitating.
Yes well I was only 20 years old and it was 50 years ago. It was really so sad. I remember thinking at the time that he had a long road ahead of him.
@parrotqueen you've certainly had your fair share of health issues. Your DEXA score makes me feel like I have a super skeleton in the -3. Something! I did have very good results from Prolia in both my hip and spine but no longer will continue with the injections. With so much bone loss have you had many/any fractures? (Maybe you've mentioned this already). I am also a diet Pepsi fan (one a day):) (I know bad for the bones but life is short).
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