Denosumab problems

Juno, always happy to see your input. I wish Allison would return because I enjoyed the opposing arguments you two did but with dignity and professionalism.

My input for this argument is that I do have severe osteoporosis but I baulked at taking any of the drugs. I take drugs for diabetes, Crohns, etc. and yes, they have risks like you pointed out but there is a massive difference.

I even purchased fosamax. I then agreed to have prolia but when it came to ingesting them I could not. That made a big impact on me so I continued to research.

It took a long time for me to start the drugs for diabetes and in the end my husband said, ‘enough, you have struggled long enough!’

I now am on maintenance level for Crohns with those drugs. I would be dead without intervention in hospital. I was saturated with hydrocortisone in hospital for a week and then tablets until weaned from the cortisone.

Yet I still resist the osteoporosis drugs! 

I am hoping to pull it up with magnesium, K2, diet, some exercise, etc.

I will soon find out if I have at least halted it. Fingers crossed!

I respect people’s choices even if I have my own way of addressing this. Like Anhaga, I share my findings. If others do not agree, that is fine!

 Neither Anhaga nor myself have any ulterior motives in what we say.

Take it or leave it, up to others!

I wish everyone well!

I respect your choice to refuse the drugs. However, sometimes some of your posts are quite agressive towards some of us. While it doesn’t bother me, I was a nurse and have had a lot worse thrown at me, it can be hurtful to people with thiner skin. I can take it and therefore I continue to put my points across, as you do. I too wish you well and I hope, when you post your updated t-scores you have improved greatly or at least stay the same, and we can all celebrate your achievements.

 

Hi Kathleen, Just a few points. You take drugs for other medical conditions (which, of course may have side-effects)  but you maintain that there is a "massive difference" here between these and OP meds.

I just don't see that difference.

It seems to me that you have, as many people do, a problem with taking ANY meds. -  as your husband had to pressure you to even take meds for Diabetes, which may actually be life-saving. 

Therefore one must see your approach to OP meds. also in that same light. 

I know you respect everyone's choices, as does everyone here, but I worry when you imply that others may have 'ulterior motives' when voicing other views.  I really think you're mistaken here but, in any event, the moderator of the forum is here to fairly address these issues. 

Finally Kathleen, I, like everyone here, only wish you the best with your alternative regime and hope your bones become strong and fracture-free. 

J

 

HI juno. I don’t see the difference either. I hate taking any meds, even supplements, but sometimes it is necessary to enable us to live our lives as we want. One person recently posted that she had lost the fear of breaking bones after she had a very good result on meds. Sometimes, however, it is the fear that stops people taking any meds. I once mentioned I would not take meds for diabeties type 2. I would for type 1 but I would do the diet and exercise regime for type 2. I was informed I could not know if I would  or would not because I did not suffer from this condition. However, one lady who contributes all the time to this forum, has never had OP but is adamant she would not take the meds if she had. WE are all different and we should respect other peoples views. However, I do worry about the people with severe OP as their score dereriorates and wonder if they fully understand the implications of what they are doing.

For PMR there is no alternative.  There is an alternative to drugs for most OP (I do not say all, there is a case to be made for a couple or three years of OP med as emergency intervention in serious cases and there are also different causes for OP, I only know about old age, possibly exacerbated by steroids).  The alternative, which has been studied and has been successfully used by more people than realized, is to go the natural route.  And if that doesn't work, then of course the therapy has to be rethought.  The terrible mistake of doctors is to make drugs the first line treatment when we know the chances of serious side effects are fairly high and increase with length of time the they are taken.  I think it is very important that people be informed, and that is why I continue to post although I have, myself, solved my problem without the use of the drugs.  I'm never telling people to come off a drug they've started, especially denosumab.  They have to make that decision with their doctor, although for many of the drugs I would suggest to them they might be able to move off them without problems but would definitely need to be very strict with following the natural methods.  But I really want as many people as possible to know that there may be a viable and safe alternative for them if they haven't started the drugs yet.  I think denosumab is particularly problematic because of the newly publicized findings.  

For many of us on this forum, there was no alternative either. Several people have posted that they have always exercised and had a good diet all their life,  but still  have OP. I wish I knew why I have this condition, but I am certain it was not caused by my lifestyle, streoids or inadequate nutrition. Once I get into the LBM category, I hope to come off my meds and stay in that bracket for the rest of my life. Thats the plan, but plans sometimes need to change. As we age, we lose bone mass. This is natural. In evolutionary terms we were not supposed to live this long. I remember you when you first came to this forum and how frightened you were about your future. Many of our members are still in that position. We must all encourage and support them, as a group. Best wishes for your continued good health

Thank you Anhaga. You described my position. I am trying firstly to halt my osteoporosis but know there may come a day where I am left no choice which will be hard for me because my sister who is like my twin has had trouble with fosamax and prolia. I am fighting taking the drugs and am hopeful by taking K2 and magnesium in particular I can still do that.

I am about to find out. In June I am having a scan so fingers crossed!

Your research has been helpful to many and I am sure it is appreciated.

People make their own choices but can now do so with information and research.

I firmly believe these drugs are not to be compared with others but investigated on their own merits. 

How long one takes the drugs is another important piece of information we now have which was not known before.

Letting people know to protect their bones before they are old is also a worthy bit of advice.

I tell my grandson to bank calcium into his bones now whilst he is in his teens.

Knowledge is always a bonus and to know earlier is even better!

Please know Anhaga that you are valued by lots of us on here for all you have done to inform everyone.

Firstly Kathleen, I hope your scan does show improvement in June and we all wish you well. However I agree with Juno. Drugs are drugs and everything has side effects. Where you had a margine to change your diet and exercise commitments, I did not. I was already doing everything advised to prevent OP but still ended up with a t-score equal to yours. I spoke with my specialist about stopping my meds now that  I have been taking them for 3 years but as I am still -2.9 in the spine, I have been advised to continue until I have my next scan in another 2 years. I would prefere not to do this, but, as I have suffered from 2 fractured vertebrae, I am prepared to continue as advised. I appear to be luckier than most. My rheumatology department are very well informed and we can drop in for advice on nutrition, exercise, stopping smoking and the different drugs and suppliments available. I think everyone appreciates all that Anhaga does. She spends an enormous amount of time contributing to forums. Most of us do not have this luxury and while I do not agree with everything she says, I respect her ideas. But, just because I don't agree, does not make me the ogre you make me out to be.

Hi there, just a few points:

 . . . " there is a case to be made for 2 or 3 years of OP medication is serious cases .. . ."

So we've agreed on something!!    Drugs do have a value.  Praise the Lord!  (Joke).

" The terrible mistake of doctors is to make drugs the first line of treatment when we know the chances of serious side-effects. . "

Doctors for some time now have been able to access risk of fracture (Frax measure, for example) and should  (and I think do), prescribe accordingly. Thus, for example, if it is found that a patient has a 20% risk of a major fracture in the next 10 years, the doctor, I think rightly, should prescribe protective meds. for a period and then review. Not to do so I think would be unethical -  since the risk of fracture here FAR  exceeds the risk of drug side-effects. Remember, there is actually a 30% mortality risk in the year after a hip fracture. 

Finally Anhaga, you have indeed improved your own T score with a commendable drive and effort, and your extensive research on diet, exercise, vitamins and minerals and the accumulation of your knowledge is a great resource for others here. Well done for that!  My concern is 1)  that your approach may only be relevant to those patients in the very same situation that you were in a couple of years ago ie. just inside the OP range and without fractures. And  2)  that people here first check with their doctor ie. they don't decide to 'self-treat'. . .  

Kind regards, J

 

At my first scan I was given my  Frax risk and it was very frightening. Having already suffered fractures increased my score. Therefore, for me, the chances of more fractures far outweighed the risks of any side effects from the meds. I truly believe if your diet is inadequate and you don’t exercise and your score is borderline, there is a very good chance you can turn things around if you change your eating habits and exercise. But for those of us who are well into OP I think, we would be doing ourselves great harm not trying the meds. Fear drives people to make their decisions and my fear of fracturing a further vertebrae and not being able to do all the things I can do, far outweighed the smaller risk of any side effects I may taking my weekly pill.

I think it is beyond self treating. It is common sense.

If your doctor or specialist does not have information that you as a patient has easily managed to find out it is a concern.

Patients with swallowing problems are prescribed fosamax. 

Patients are left on these drugs indefinitely.

I don’t have confidence in the medical infallibility.

The fact that we are even on here and researching shows that we do not believe our doctors have all the answers.

My GP appreciated my research and even used a piece of it to inform other doctors. She admitted she does not have the time to research and know the answers. Half her patients have refused the drugs.

General medicine is too massive for them to know it all. Even a specialist is covering too many parts of that area of medicine to be godlike.

I still wish I had never had that first Dexa scan.

Best medicine would have been to prevent my osteoporosis.

Research to discover the causes would be more helpful.

Lack of vitamin D3 for years, lack of magnesium, not getting the calcium into the bones, a reduction in vitamins and minerals in our foods, and other unknown causes would be far more useful.

Prevention is preferred to cure especially when what is offered is so frightening!

 

I agree that prevention is better than cure. But, Doctors also have access to the internet, just like us. They also have the benefits of at least 5 years hard study and some of them specelise in Musculoskeletal medicine. I don’t think Doctors are god like. Worked with them for too many years to think this, but the internet often spouts a lot of rubbish that many people read and believe. Unlike you, I am glad I had a scan. I wish I had accepted it sooner, when I was advised to have it by the medical profession who know better than me .if I had not had the scan, I would not have had the chance to start to reverse my score and may well have been a -4.5 by now. I wonder why you continue to be scanned if you prefer not to know. Don’t be pressurised into having one. It’s your body after all.

I too would like to see more reasearch as to why some people, who do all the things advised to prevent OP still develop it. You have family history and it could be that alone. We cannot change our genetics. I don’t even have that. I continue to contribute to this forum to give others hope, whatever route they take, and, that even after severe fractures, a normal life can be achieved after OP diagnosis.

Don’t know why they felt the need to moderate that response. I only said I agree that prevention is better than cure and we all have access to the internet, even Docters who are certainly not Gods. But they have had the benefit of at least 5 years training and some in musculoskeletal medicine.

 

I also said that you have the benefit of knowing your OP runs in your family and you cant change your genetics. I don’t have this and agree that more reasearch needs to be done to find out why we develop OP when we eat well and exercise. I am pleased I had the scan so I could start to reverse my scores with the meds or I may well have a worse score now, rather than a better one. If you don’t want to know your scores, don’t be pressurised into having a scan. Its your body.

Yet again. I am glad I had the scan. If not, I could have been in a worse situation. The scan gave me the opportunity to rectify my decline.

Exactly.  I was afraid of the drugs, not OP per se - that "crushed" me, more like a feeling of depression than fear.  Knowing that I can manage without drugs has made all the difference.  And I do acknowledge that maybe not everyone can do the same, but I really believe that most people in our position should be given proper guidance about keeping the bones healthy, and improving them, before drugs are recommended.  Really, the drugs are there for people who can't get well without them.  It's all about information, sharing our experiences.  I think we all know that most doctors know practically nothing about nutrition so that's a good place to start.  Cheers.  

Hi Kathleen, I definitely agree with you that doctors, especially GPs, don't have all the answers and that sometimes their patients are can be more up-to-date than them - having thoroughly checked 'Dr Google' before they arrived!  In this country anyway, GPs are seriously overworked as they attempt to see every patient on the same day they request their appointment. . .Little time for attending conferences, or to do much reading. . . But they are very quick to refer on to specialists. I wouldn't even know I had OP if it wasn't for my GP hadn't suggested a DXA scan as I wasn't in any particular risk group - except for my dreadful diet.

So, on to the specialist I went and thorough testing was done before a decision was made about prescribing meds. The specialist was a Harvard-educated doctor and head of the Osteoporosis Foundation and said " my aim is to prevent you from having fractures, and, if you were my mother, this is what I would advise". . She then went on to advise me about exercise, some dietary changes, getting help from a physio., and medication.  And here I am - 4 years later, still fracture-free despite really woeful T-scores at the start which had improved 11% at my last scan. I  have no idea what they are now, could be  better, worse or the same though the specialist did distinguish  between 'bone quantity' and 'bone quality'.  Like yourself, I have a scan due in the next couple of months. . . . 

But what was offered to me in this whole treatment approach was not at all frightening.

J

  

If your diet was not good, I am certain you are trying to eat better but I do not believe, when we get to where we are with these dreadful results, we can turn it around without medication. I have always eaten well and would love someone to tell me why my excellent diet and exercise, (all my life) made no difference to me.  Look forward to seeing your results and Kathleens too. A mini comparison. You on drugs, exercise, diet and supplements and Kathleen on all of those minus the drugs.  I hope you have both improved your scores. It will be interesting.