Hi I would be really interested to hear from anyone who has been treated with IBANDRONATE either in the past or present and had either reoccurring chest infections or Pneumonia.
The reason I ask is because along with other side effects, I suffered the above when being treated with IBANDRONATE for 3 years.
I was put back on it 2 years ago and after being clear of symptoms they reappeared.Thanking you in advance.
If you look at this link and scroll down to the section "For Health Professionals", you'll see that respiratory infections, including bronchitis and pneumonia, are listed as common side effects. I had similar issues with risedronate (another bisphosphonate, tablet form), not chest infections, but was constantly ill the year I took it, including a sinus infection that needed antibiotics. drugs.com/sfx/ibandronate-s...
Yes I know it's listed as a side effect along with many others, I was interested as to how many people on the forum may have experienced these particular ones.
The reason I am interested is because with the 4 fractures I already have and my bone density so low, I really need tocotinue with some form of treatment.
My only options are to stay on the Prolia or go back on the ibandronate.
I will be putting another post on regarding the Prolia.
I need to clarify some things and be sure in my own mind as much as is possible that the Prolia is responsible for what I am going through and not something else.
Tough decision!
Yes not much of a choice is it?
Would you be a candidate for Strontium ranelate?
Have you seen the side effects for this??
I thought It had been withdrawn, I have looked at the NICE guidance and it's not recommended for a person of my age with a T score less than -4.
It's not been offered to me and if it had been offered I doubt very much I would have wanted to take it up anyway.
OK, I have to admit I don't know who it's available for. It was withdrawn briefly (supply issues) but has been available again since the beginning of this year.
I have read that it was Discontinued in August 2017 because of very serious side effects.
Perhaps it has been marketed again ?
Yes, the manufacturer stopped producing it because it was no longer commercially viable, as use was limited due to some safety concerns. However, research has shown that it is safe for most people and another supplier has been found: theros.org.uk/what-we-do/la...
Dont know if I am unfortunate or perhaps fortunate that I cannot qualify to be treated with this particular drug.
It has jogged my memory though and it was discussed with me some years back and as I was on medications at the time and a family history of heart disease It was decided by the consultant best avoided for myself.
If you are currently on Prolia (denosumab) you do know you must continue to use it or to switch to another bone med? I wonder whether strontium really is the best choice in this situation as it is equivalent to a nutritional supplement and if you are at risk for rebound osteoporosis (if you've had more than one dose of Prolia) then you almost certainly need something else guaranteed to counteract rebound osteoporosis until all aftereffects of Prolia are gone. Not to say that strontium wouldn't be a good choice afterwards, I don't really know. Strontium replaces calcium in the bones and is heavier than calcium so gives the impression of greater bone density - they have to account for that when doing DXA scans.
Also in your situation if you've been suffering from infection after infection, Prolia has a deleterious effect on the immune system.
Is there any reason why, if you choose to discontinue Prolia, they wouldn't try a different bisphosphonate as ibandronate seems bad for you? Or to try Forteo (teriparatide) for a maximum of two years?
I've just read another post of yours and see you have only taken Prolia once. That's probably a good thing. Also that Forsteo (aka Forteo) had bad side effects for you. What a mess, I do feel bad for you. One wishes one could just rewind the whole scenario and start off fresh with information at a young age on how to maintain good bones. But that's water under the bridge now.
Did you ever get any advice on nutrition, supplements (like Vitamin K2) and appropriate exercise?
Have you ever been tested for secondary causes of osteoporosis?
americanbonehealth.org/bone...
I have not had Vitamin K2 brought to my attention.They check calcium and vitamin D levels regularly and they are always good.
I have always been a very active person and used to prefer to walk everywhere rather than drive.
I struggled to walk on 2 crutches from May 17 to November18. Walking now, apart from moving around the home has become impossible for me because of the pain I am in.
I am reducing my pain medication under the guidance of the nurses at my own request.
I am of low body weight now and need to get right down or even off them, as when I have another fracture I will need to go back on to them.
My low body weight restricts my dosage.
As for secondary causes I have never been told of any specific blood tests that have been carried out apart from the usual ones.
I was told a few years ago that they were going to have one more thing checked but I did not know what it was.
Vitamin K2 has been found to direct the calcium into the bones. Most people eating a standard Western diet are probably deficient in it now as our main food source used to be grass fed animals. It seems most doctors don't know about it, but that's hardly surprising considering how little nutrition education they get. Even my daughter, a registered dietitian, didn't know about it until I told her. And I found out by word of mouth from a friend of mine who also had faced an osteoporosis diagnosis and done a lot of reading before ever I was talking to her about my then new diagnosis of low bone mass. she told me about the book, Vitamin K2 and the Calcium Paradox, by Kate Rheaume-Bleue.
I am so sorry to hear about your physical difficulties. I'm sure there must be some sort of physical therapy which is appropriate and possible for people in your situation but you'd need guidance from a trained therapist.
The reason I keep banging on about the "secondary causes" is I've read a number of times on the forums I follow about people who have had difficulties with the parathyroid (not part of the thyroid) and until that problem is sorted out no medication will help. Once they've been treated their osteoporosis starts to reverse.
endocrineweb.com/conditions...
Not to say this is your problem, but really the doctors should investigate properly, especially as your response to the medications doesn't seem to have been what you'd hoped or expected.
I understand the Royal Osteoporosis Society has a help line where you can get very well informed advice.
Zoledronate or Raloxifene
Advice on treatment for osteoporosis.
Different Treatment Advice from Endocrinologist and Rheumatologist
Pregnancy/heparin Induced Osteoporosis - Forsteo or Zolendronic acid? Advice needed please...
