Hi Everyone,
I have Polymyalgia Rheumatica and have taken steroids for 18 months. After breaking some bones last year I had a DEXA scan and was told I have severe Osteoporosis. It's been recommended I have injections of Romosozumab, which is new on the NHS in the UK, so I'd like to hear from others what experience the have of this drug. Thanks
Hi, I am in the UK too. Have also had CFS for 30 years plus a host of other health problems.
Lots of migraines etc. Took Forteo for 6 months and have MGUS. Have had one injection of Evenity and a lot of migraines plus sleeping heavy and double vision (which may not be connected) so I am hovering on taking the next injection. Otherwise nothing else yet.
What bones did you break? What is your score on the DEXA scan?
I took it for a year in the US. My DEXA numbers improved, and I had no side effects. I’m on Prolia now. Good luck!
Thanks, I have seen some positive results from the USA, glad it worked for you.
HI WellThatHurt, we have a factsheet that explains this drug a bit further that you could read strwebprdmedia.blob.core.wi...
Thanks, yes I've had the leaflets and looked it up online. It's always useful to hear from real people as well though. I was most worried about the idea of giving myself injections but was reassured yesterday by having a demo of the epi pen style gadget it comes in.
With the newer OP drugs you have to be aware of the strong possibillity of rebound OP if you have to discontinue the drug for any reason. It's not usually recommended to start with one of those drugs if an older type with known and controllable side effects is tolerated. But first you need to decide if you really do need to take an OP drug. You didn't say what type of fractures you've experienced. When I was advised to take AA after being on pred for a few months (PMR) one of the factors considered was a previous fracture. Not taken into account was the reason for the fracture. It was definitely not a "fragility" fracture. If you have experienced fragility fractures then of course medication is strongly advised, especially if your OP is truly severe. Do you know your t-score? It's good that you are looking into the possible side effects of the various options for medication. However there are other things you can do in addition to medication, or for some people whose DXA scan is not so dire, they may decide not to take medication and use other methods to improve bone density.
For you and for others who may be reading this thread you may be interested in my story. I am definitely not suggesting people with severe OP should forego medication, but there are some, especially those who haven't fractured, who are (like I was) advised they need medication when in fact they do not.
healthunlocked.com/pmrgcauk...
Hi, Thanks for the advice and sharing your experiences. Sadly I have severe Osteoporosis, which had almost certainly started well before taking steroids for PMR. My scores are well below my actual age in all areas and I had a fragility fracture in my foot as well as a serious fracture from tripping over that was far worse than it might have been. I asked my Doctor and my Rheumatologist about the risk of Osteoporosis over a year ago and both said just take extra Vitamin D and Calcium. In hindsight I wish I had pushed them further and insisted on a DEXA scan then. In may case I really could have done with taking AA much earlier.
Best wishes! Good that you've been properly assessed for taking the drug. Hope it works well for you.
Have you got your tscores? -3 is often said to be severe but could also be addressed with exercise and diet. Are you taking vitamin k2 to aim calcium into your bones? Has the cause been discovered in case that could be addressed.
If there is a discrepancy between results like -3 or -4 in one place but -2 in another? If so, one of those results is wrong if not both.
Have you broken any bones? These aren’t good drugs so do your research before beginning any of them.
You probably already know that Romosozumab has a black box warning in the US. Denosumab also comes with the possibility of life-threatening side effects.
Indeed, which is why I had a very thorough health check yesterday to make sure it is suitable for me. They are being rightly cautious it seems.
Hello WellThatHurt,
If you go ahead with the new treatment I would love to hear how you get on.
I too was offered the Romosozumab but my situation is quite complex, I now have 10 spinal fractures and feel strongly that it has come too late to make any real difference for me.
It does appear to give excellent results and has taken awhile to reach our shores
However one must follow on immediately with another treatment to keep the gains. (The favoured treatment being Bisphosponates) without this you would lose very quickly all the gains Romosozumab brings to you and more.
In the past I have not tolerated the Bisphosponates so it would not be a good move for me anyway.
I must add this was going to go ahead if I had agreed to it with the medical professional having full knowledge of my intolerance to the Bisphosponates.
I wish you all the very best and hope you do really well on the treatment.
I have lived with osteoporosis now for 20 years and my journey has not been a positive one.
It is always good to hear of the good experiences others have had with the treatments instead of the bad.
People only usually tend to write about the negative experiences not the positive.
Take care and keep us posted.
Thanks for your comments, and I will indeed post a follow up in the future.
What to do when denosumab course ends?
am I absorbing calcium 
Is thinning of Pelvic bones painful? 
