Prolia, Bisphosponates, compromised i... - Bone Health and O...

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Prolia, Bisphosponates, compromised immune system.

Feeling rather fed up. Got oral thrush again.

Its no coincidence that this is liked to the above treatments for Osteoporosis. When I was previously on Ibandronate injections I had repeated bouts of oral thrsh which after investigations was found to be in my gullett also.

This went on for the 3years I was having treatment with Ibandronate, along with blistering of the soft pallette and throat, repeated chest infections and 2 bouts of pneumonia.

On stopping the Ibandronate all the other illnesses began to clear and I started to enjoy better general health.

When on Forsteo for 2 years I was also clear of these problems that had plagued me.

In 2019 I had 2 more injections of Ibandronate 6 months apart and yes oral thrush and a chest infection along with a lot more of other side effects occured.

On stopping it, yet again I was symtom free.

Last year I had my injection of Prolia, and yes along came oral thrush and a host of other side effects along with it (no chest infection though)

Since that one injection I have not had good health, I am now due to see a gastoengeologist later this month, and because of chest pain that resulted in going to A and E to be told my Troponin levels were raised I am also waiting to see a Cardiologist.Whilst on these treatments and in some cases for a while after having them, I have had so many health problems that it has to be more than a coincidence.

This month I was due to begin Zoledronic acid infusions.I have for now put these on hold which I have been told is putting myself at an even higher risk of fracture.

To date I have 4 spinal fractures All of which have occured without trauma depsite having all these different treatments.

I am living my life in fear of more fractures, am in constant pain, dependant on my husband and family as my last fracture resulted in my being in a wheelchair (I do have other spinal problems which add to the pain and disability)

I am torn between treatments or not.

The treatments for me mean trading in my general health and well being. What does one do??

I have been through just about every treatment and now feel is it really worth it.

After all none has stopped my getting 4 fractures!!!

Thanks for reading and I am ever grateful for this site to enable us to tell of our own experiences.

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Sunseaandsand

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31 Replies

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5 years ago

I am immunocompromised anyway as I have RA, Sjogren's Syndrome and Vasculitis and take DMARDS (immunosuppressants) Also have Bronchiectasis. This hasn't got worse since taking Zoledronate.

Sunseaandsand• in reply to5 years ago

Thanks for your reply, it sounds like all your medications and treatments work well for you.

Its good to hear something positive as usually we can only write and read about the negatives of the treatments.

Wish you luck in your continued care, and let us know when you have your next scan what your results are.

MollyStark5 years ago

Has your consultant recommended strontium ranelate at any point? I am unable to take bisphosphonates and due to my fracture and worsening bone density, I asked about raloxifene or strontium. I was told they would suggest either or these for me. I now have to decide what I do. Strontium scares me but it does seem to come with good results and fewer side effects. Wish I could know what to do for the best.

Kaarina• in reply toMollyStark5 years ago

When I was prescribed strontium ranelate I had no side effects from taking it. I did have to wear a 24 hour blood pressure monitor before I was allowed to be on this prescription. This was before it was taken off the market. When it was brought back I was told that in my area it is no longer prescribed. Now I do not take any osteoporosis drug only supplements including K2.

I would recommend SR as I suffered no side effects when taking it .

Sunseaandsand• in reply toKaarina5 years ago

Hi Kaarina,

Strontium Ranelate was discussed a few years ago with my osteoporosis doctor.

It was decided that it was not a good option for myself owing to the fact that Dexa scans are not done because Strontium interferes with the results.

It defeats the object if bone density can not be monitored.

At this time I would not be a suitable candidate as I have an appointment with a Cardiologist next month.

It seems that you are doing well at the moment and I admire your approach at addressing your OP by natural methods.

MollyStark• in reply toKaarina5 years ago

Thank you for your reply. How long were you on SR? Did it improve your bone mass and has it maintained since coming off it? I am aware I've hijacked this post with my questions so I have just put up my own post regarding treatments.

Kaarina• in reply toMollyStark5 years ago

Around two years if I remember correctly. When I had a dexa I had only been off the SR for 6 months. I was told I did not have OP any more. Not sure if SR was still in my system though and of course no account was made for this in the report. Saying that, I cannot have a reliable reading taken from a DEXA regarding my spine as I have scoliosis and degeneration. I hope to have another scan this year.

Sunseaandsand• in reply toKaarina5 years ago

Hi Kaarina,

I am a little confused by your reply, you say that you were told you longer have OP.

What were your T scores before your treatment?

Also degeneration of the spine does not interefere with dexa scan results but Strontium does.

Are you in the UK?

Kaarina• in reply toSunseaandsand5 years ago

I am in the UK.

Dexa scan in 2015 : Lifted from letter I received.

Total spinal T score is +2.5 but this figure is unreliable because of scoliosis and degenerative changes in the spine. Total Hip T score is -0.7 and neck of femur T score is -1.4

My Dexa result in June 2018:

Lifted from letter I received. Hip T score of 0-2 and neck of femur T score of 0.8 Spinal DEXA was null due to spinal deformity.

Sunseaandsand• in reply toKaarina5 years ago

Hi Kaarina,

Why were you put on treatment for Osteoporosis?

Your T scores do not indicate that you have Osteoporosis and do not warrant being put on treatments.

It is usually the score on the hip that determines if you have OP.

Kaarina• in reply toSunseaandsand5 years ago

In 2012 I had lost 5 inches in height. I had a dexa scan and I had compression at L2 and my late mother had a history of osteoporosis. The comments on the report were that my lumbar scoliosis and associated degenerative changes make interpretations of my spine very difficult and my hip result is likely to be the more representative. That looks reasonable. The asymmetrical distribution of force associated with my scoliosis may make my lumbar vertebrae more vulnerable.

It was recommended that I have three years with AA with a repeat dexa scanning in 2015. I could not tolerate the AA. The only drug I wanted to take if I had to was SR. It was eventually prescribed for me.

I will know more this year when I hope to have another DEXA. I have this in writing so I am sure the scan will be granted. I have been on no OP medication for quite a time now, only prescribed Vitamin D and I buy my own supplements and walk plenty.

Sunseaandsand• in reply toKaarina5 years ago

Hi again,

It sounds like you have good medical support in that things have been explained well to you.

I think that is so important and wish it could be that way for everyone.

I am sure you will get your scan as promised and I hope the results are good.

Please let me know how you get on, you sound very positive and are doing everything you can to help yourself.

I used to love to walk, even when very young I used to walk miles with my friends.

As I got older I would enjoy long walks with my husband and children,and then my granchildren.

I so miss it, such a great feeling.

Thank you so much for bringing those memories to mind and continue to enjoy your walks.

Kaarina• in reply toSunseaandsand5 years ago

Thank you. I do try to stay positive but I do have other health issues to contend with. I have osteoarthritis and have had two knee replacements and one revision, which has not been a success from day one. I have had a total shoulder replacement and a revision of this operation too. Again not a success. I can no longer, for example, hang washing on the line or reach up into a cupboard, even washing my hair and holding a cup of tea and drinking from it with this arm is not at all good or impossible. I have no rotator cuff anymore so have physio and although I do the exercises I am pretty sure it will not improve even by strengthening other muscles to try to do the job of the rotator cuff. I have had a vertebrectomy operation due to spinal cord compression. After this operation I used to fall a lot when out walking but that did eventually improve.

I wish you all the very best and I shall keep in touch. Gentle hugs to you. {{{hugs}}}

Sunseaandsand• in reply toMollyStark5 years ago

Hi, One of your replies has come through to me, it does make interesting reading and has raised a couple of questions myself.

I have seen your post.

I personally found Raloxofine to have minor side effects, it was only the problem with my eye that prevented me continuing with it.

I had Forsteo and was given it on the NHS but you do have to ticl all the boxes criteria wise.

Whilst on it I suffered terrible bone pain and sickness.

The results were dissapointing, I was given a dexa scan 6 months into my treatment and my hips had detiriated by 14% at the time I was told it was probably a false reading.

It was not, my hips after 2 years of treatment never recovered to the starting point they had been at prior to treatment.

The Spine showed a slight increase.

Out of all the treatments I have been on Raloxofine gave the least side effects and was an easy treatment to take.

We have to give things a try and hope we find something that works well for us.

Sunseaandsand• in reply toMollyStark5 years ago

Hi again,

I was given Raloxofine a few years ago and had a blood clot in my eye (it is a side effect that is listed in the patient information leaflet) I was taken off it and my GP who had not pescribed it in the first place (it was the hospital who had put me on it )would not then issue me with it as it was against NICE guidelines) Confusing or what?? The patient information leaflet is available online as are all the others.

These tend to tell you what the doctors do not.

Strontium was discussed with OP docter a couple of years ago and was not considered a good option by them as they are unable to give Dexa scans owing to the Strontium giving false readings.

It certainly would not be an option for me now as I am going to a Cardiologist next month for investigations into chest pain and higher than normal trponin levels.

Sometimes I do wonder just where I would be healthwise and fracturewise if I had never had any of the treatments for Osteoporosis.

My only option at the moment is to have Zoledronic acid infusion.

I'm sure you can appreciate my concerns and I feel right now I want to get these other health problems looked into.

You can look at more recent information about Strontium Ranelate, google Why Strontium is not advised for Bone Health. It is an American health website.

Please let me know which path you go down, these are hard decisions to have to make.

MollyStark• in reply toSunseaandsand5 years ago

Thank you for your reply. You have certainly been through the mill with these bone treatments. It is a very hard decision to take them. I am scared of the meds but also by my situation. My blood pressure is usually normal when taken at home in a calm situation but always goes up when I'm at the drs, plus I suffer from terrible anxiety due to lots of things (my husband has cancer and needs three monthly check ups so my anxiety is always high) so I'm concerned that may have a bearing on my blood pressure a lot of the time.

The consultant I saw said they can make allowances for strontium when they do a dexa scan but like you said, I had heard otherwise. I didn't have a lot of faith in him, to be honest.

(I felt I had hijacked one of your posts with my questions, so I have put up my own post too.)

Sunseaandsand• in reply toMollyStark5 years ago

So sorry to hear of your husbands illness, sometimes there just seems too much to cope with and its only natural for our anxieties to go through the roof.

Its hard enough to make these decisions when times are quite but when so many other things are going on it just adds to the stress.

I like yourself do not know what to do for the best and am now running out of options.

At the moment I feel I must get these other health problems sorted out.

I certainly dont want to be starting a new treatment at the moment because if I have any side effects it will only complicate matters.

As for replying to others answers thats quite acceptable we all do it on here.

Sometimes it's good it works in that way as we get linked up with others who are in the same situation as we are.

Take care and I do hope your husband has got the healthcare and support that he needs.x

Bev53-SB5 years ago

So sorry to hear you have had such a bad time. I am taking Raloxifene with no side effects. It is said to improve bone density in the spine, less so in the hips. I was prescribed Raloxifene after a car accident in which I sustained two compression fractures and fractured sternum. I have been taking it for nearly 12 months and will not know how well it is working until my next DEXA scan in February. My second choice was Strontium Ranelate. So far having been diagnosed with OP for ten years, I have stayed clear of any of the bisphosonates and concentrated on diet, supplements and exercise.

Sunseaandsand• in reply toBev53-SB5 years ago

Thank you for your reply.

I hope that you are recovering well after your car accident, and that your bone density shows to have increased when you have your next Dexa scan.

It is good to hear that you have no side effects, I was given Raloxofine a few years ago and had to stop taking it owing to a blood clot in my eye, this was caused by the treatment.

I just seem to be one of the unlucky ones, it is good to hear the positive experiences though.

Strontium is not recommended for myself owing to dexa scans not being done with this treatment as it interferes with the results.

Also as I have mentioned I am due to see a Cardiologist next month.

Good luck with your treatment and natural methods it seems you really have it sorted!!

Bev53-SB• in reply toSunseaandsand5 years ago

Thank you, yes I have recovered from the car accident it was 3 1/2 yrs ago so my fractures are well healed. I’m sorry Raloxifene wasn’t right for you, blood clots can be a side effect and the risk of a stroke. I really looked hard into this before I started taking them. It feels like Russian roulette, whichever treatment option we choose, the side effects are scary. I can remember when I was diagnosed my consultant actually said OP treatments .. and at the time he was talking about bisphosonates ... would not enhance quality of life. So it was no thank you ... and a long time researching how to at least prevent deterioration with diet, supplements and exercise and I did really well until the accident, I was a passenger when we were involved in a 3 car shunting. I couldn’t exercise for several months and stress would have negatively impacted on my bone density so my DEXA results did show some deterioration. Because of the compression fractures my consultant said that my spine was now compromised, hence the Raloxifene. Ultimately we all have to find our own way through this quagmire and it’s helpful to know there is always a listening ear on this forum.

5 years ago

So far, no fractures, but after taking prolia injuections have had great difficulty with my teeth, which I never had before. Turns out, prolia drains calcium from one's teeth. Costing me thousands. Checked on a class action law suit against prolia manufactures. At this point, only taking people with fractures. You can find info on-line. I refuse to take any ;more drugs and am in a health and wellness program.

Sunseaandsand• in reply to5 years ago

Sorry to hear the problems that Prolia has given you.

I hope Prolia is fully investigated as I am sure it is causing more problems than we know about.

It will take time but the truth will out.

Reasearching into it more I myself have been surprised and shocked at the many illnesses Prolia can cause.

What surprises me is that the Doctors still want to push it onto us, even though they are aware of the terrible side effects.

I am so glad I decided not to be persuaded to continue with it.

Take care and I hope the problems with you're teeth can be taken care of.

Ange3335 years ago

Hi did you have any fractures before you started the medication? What are your t-scores?

Sunseaandsand• in reply toAnge3335 years ago

Fogot to mention that before I was started on any treatments I was told there was a borderline appearance on L3.

This is not where my other 4 fractures are.

I was not started on any treatment for 2 years after my first scan as I was told they wanted to wait to compare my results with my next Dexa.

Sunseaandsand5 years ago

Hi Ange,

My T Scores as of last year were -4.7 in the spine and -4.1 in the hip -4.6 in the neck of the femur.

My first treatment was Ibandronate which I had for 3 years and was then put on a drug holiday, I then had my first fracture.

After this I had Forsteo for 2 years after completing I had 2 fractures within a month of each other and when completed was given Raloxofine.

The Raloxofine was stopped owing to a problem it caused in my eye (A suspected blood clot)

I was then put back on Ibandronate injections.

After those I had a fracture last January and had a Prolia injection shortly after.

Can I ask why you ask?

Have you had fractures yourself, or thinking about treatments maybe?

Ange3335 years ago

Hi I was asking because I am really unsure as to what treatment to start. I am 63 and so far I don’t have any fractures but my DEXA scan showed -3.8 in my spine and -1.6 in my hips. I was first diagnosed in 2018 and my spine was -3.4 but this was on a different dexa Machine so I am waiting to have a scan on the same machine.

My GP has referred me to a rheumatologist to discuss medication as my DEXA scan came back saying severe osteoporosis. I am feeling really stressed about making a decision. My mother had a broken hip in her mid 80s but never took any medication for osteoporosis

Met00• in reply toAnge3335 years ago

If you haven't had any fractures, you may not need meds, as bone density and bone strength aren't necessarily the same thing. If you're in the UK, can afford it and live close enough, you might consider seeing Nick Birch (orthopaedic consultant) at Osteoscan UK Ltd for a REMS ultrasound bone scan and consultation. REMS technology is newer than DEXA, and very new to the UK (not available on the NHS) but been around long enough to be thoroughly tested and shown to be more reliable than DEXA because it isn't open to the same errors. My t-scores with DEXA in 2018 were -3.6 spine and -2.5 hip, but there's a school of thought that believes that this kind of discrepancy between scores for most people is likely to be down to an error (for example, curvature of the spine can make the spine score inaccurate). I had a REMS scan done last November and my scores from that were -2.6 for both spine and hip. If you're interested, they're based in the Midlands but hold clinics further afield. Here's a link to their website: osteoscanuk.com/. There are also 2 or 3 other venues, through a different company bonosso.uk/, the latter also providing an assessment of bone strength (trabecular bone score).

Ange333• in reply toMet005 years ago

Thanks that is really encouraging information. I will try and contact them.

Do ROS have a view on REMS scans?

Are you on any medication?

Met00• in reply toAnge3335 years ago

The ROS recommend DEXA scans because REMS ones aren't recognised officially by the NHS, though I've heard of individual GPs who are more than happy to accept them. I'm not on meds, did take risedronate for a year but too many side effects. Stopped over 4 years ago.

Sunseaandsand• in reply toAnge3335 years ago

Yes, I have always had my Dexa on the same machine which is recommended.

From my own personal experience though once diagnosed with Osteoporosis, the density will decline without treatment if at levels you have mentioned.

It is very stressful trying to make the decision.

I made the decision to try Prolia last year after having another fracture.

Even after having side effects with the treatments I still have to keep trying.

These fractures cause horrific pain and the thought of having more in the future frightens the hell out of me.

When I think of the treatments I worry about the side effects (but treatment can be discontinued) the fractures leave you with permanent disability, which change your life forever.

Ange3335 years ago

I think you are right. I think I am in denial.I have been trying to exercise, take supplements and eat well it it doesn’t seem to have made any difference so I guess I might have to try a medication but it’s very scary. I have problems with my teeth so worry about biphosphonates.