Does anyone have any information regarding the effects ofosteoporosis treatments on the immune system?? I ask this as when having Ibandronate 3 monthly injections I had reoccurring oral thrush. Then in 2017 I had further injections and again suffered with oral thrush. I am coming to the end of my Prolia injection and I am yet again suffering with oral thrush. This is a horrible thing to have and the treatment to eradicate it takes time and is very unpleasant so feeling rather fed up at the moment. At first I was taking gaviscon advance because I was led to believe it was acid reflux!! Hoping that someone has some information that may help me understand what's happening.
OSTEOPOROSIS TREATMENTS : REDUCED IM... - Bone Health and O...
OSTEOPOROSIS TREATMENTS : REDUCED IMMUNITY.
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Sunseaandsand
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Prolia can have very serious effect on the immune system. In fact that was the original concern when it was introduced, before we knew about the rebound osteoporosis after treatment was discontinued. Not sure about ibandronate but among the listed possible side effects are upper respiratory infection, pneumonia, urinary tract infection, so that would indicate that it can affect the immune system.
It is of interest that the osteoclasts (the action of which is suppressed by both bisphosphonates and especially denosumab) are part of our immune system.
Hi and thanks for your quick reply.
When I was on Ibandronate I had many chest infections and also 2 episodes of pneumonia.
We thought after stopping ibandronate that it was possibly responsible for all problems I was having.
As for the Prolia I have had all kinds of side effects since the injection I had in February this year. The information you have given me is very helpfull I shall look into it further now and bring this up at my doctors appointment on Friday. Both myself and my husband were unaware that the osteoclasts are part of the immune system. Thanks once again
It's certainly not something we are told. I only know because when I was faced with the possibility of having to take AA I did an awful lot of reading. And at that time Prolia was just becoming well known so there was discussion about it. Sometimes timing is everything! There is quite a lot of research info available on line these days so you can get the details if you want to go armed when you see the doctor.
Prolia can, apparently, be safely discontinued after only one dose, but after two and more you must take another bone med for a certain length of time to avoid the possibility of rebound osteoporosis.
I have not been able to find anything saying that it is safe to stop after one injection.
I am definitely not continuing with it and I am waiting to hear back from the hospital as to what happens next.
For some reason they are being extremely slow at getting back in touch with me.
I can't find the reference just now but what I read recently, and if I find it again I'll post, was that after one dose a patient would not experience increased risk of fracture. However after two the rebound effect became evident and, which I found most telling, was as severe as if the patient had been on denosumab for longer, in other words the risk of rebound OP was as high after two doses as it would have been after four or more.
The statement is in this item. It sounds authoritative but I have not found a research article confirming it - not that that means anything as I'm not a medical researcher!
melioguide.com/osteoporosis...
It's in the section headed "Can you stop taking Prolia"
One of the reasons I stopped taking risedronate was that I was constantly ill while I was on it, including a sinus infection (not something I'd had before) that needed antibiotics.
It is surprising how other people's replies have you thinking . I had a sinus infection amongst other infections when I was on ibandronate.
I don't know what I am going to do as it looks like going back to ibandronate is the only option I have left. Thanks so much for your reply.
I know you have had some spine fractures and quite serious t-score results. What kinds of lifestyle things have your doctor or physiotherapist suggested? I believe even people with difficulties such as you face can benefit from nutrition, supplements and (in your case very careful) appropriate exercise.
Did you ever get any tests to make sure you have no "secondary causes" of osteoporosis?
And has the treatment to date helped improve the t-scores at all?
I have only been given basic advice but take supplements and have an extremely good diet.I am of very low bodyweight which amongst other things I feel the treatments I have received over the years are responsible for. Physio are unable to offer any help now. I have been shown muscle core excersises and seated excersises for my legs.
They have advised against any arm exersise for fear of more fractures.
I do not know what tests have been done for secondary causes other than the obvious ones. This is somthing that I intend to ask about though.
Despite treatment my bones density in the main has continued to decrease.
On Forsteo in the first 6 months my hips went down by 14% and at the end of the 2 years my result was still lower than when I started treatment. The spine did show a slight increase.
There's a good site which outlines some of the major possible causes. One which seems to be mentioned relatively often is trouble with the parathyroid glands. If this is not attended to no medication or other therapy will help.
americanbonehealth.org/bone...
Thank you for sending the links, it really is worrying to think that we are never given the full list of side effects.
I shall be asking what blood tests they have done in the past.
I would be very surprised if they had not tested for what you mention.
Hopefully they did, but I'd have thought you'd have a better reponse to the treatment you've already undergone, especially as you seem to have a pretty healthy lifestyle. Are you on any other medications? Some of them can affect the bones, things like corticosteroids, or protein pump inhibitors for example.
At present I take a tablet prescribed by the hospital for women.
It is prescribed for chronic constipation. This as far as I'm aware is a safe tablet and comes with very few side effects which I am not affected by.
I take one lansoprazole 15 mg tablet in a morning. I do know that long term use of these drugs can have a negative effect on the bones.
My husband and I have brought this up a few times when I have attended the bone clinic as he wants me off them now.
The doctors reply is I need them.
I had Buprenorphine patches in 2017 and with this last fracture Oxycodone (which I am coming down very slowly) The pain has become intolerable again but I am trying so hard to manage)
I am very concerned that if I don't get right down on it, if and when I fracture I will have no room to increase, as because my weight is so low I am limited to how high I can go.
I'm getting good support with this though.
Forgive me if I'm asking too many questions, but what is the reason you need the lansoprazole tablets? I know a lot of people on the PMR/GCA forum switch over to other medications, like ranitidine, even yoghurt, to protect their stomach from the effects of the prednisone we all take. Ranitidine doesn't have the same effect as PPIs but is generally considered to be as effective or more so for protecting the stomach. Of course one has to taper off a PPI carefully to avoid rebound acid production! Really, we all need degrees in pharmacology or biochemistry to navigate the health (or more accurately sickness) care system these days.
Wonderful that you have such a suppportive husband.
It's quite a story really.I was told by ears nose and throat after having a look down my throat that I had acid reflux.
They put me on the lansoprazole, I then saw a gastroenterologist who had me go for some detailed tests, it was found that I have a motility dysfunction. I had to wear a 24hr moniter which was horrendous this consisted of a wire fed through my nose and pipe into my stomach.( I have had quite a number of tests but this was a very bad experience)
The results of this test were that I was not producing excess acid and the consultant said to stop them.
I did this straight away and my symptoms were so bad a gp put me back on it.
He told me to take 60 at night and 60 in a morning I had one dose in the evening and was faint and so dizzy I did not take any more at that dose.
I take one 15 in morning and my husband is begging me to get off it.I really want to but don't know the best way.
I have a bad hiatus hernia.
I would welcome any advice on how to do this.
When you were told to stop the PPI originally were you also told you needed to taper off, and maybe at least temporarily use a different med while the rebound acid production effect wore off? Also, if you were on the med at the time how could they see your natural acid production? (It seems it's like telling someone on prednisone their autoimmune disease is gone because the inflammation is gone so you can stop the medication. But it's actually the pred which is controlling the inflammation and you still need it. But maybe it works differently with this problem. I don't know.)
You poor thing. It sounds like an ongoing horror show. The worst of it is, the solution may be surprisingly easy if only it could be discovered!
Hi, I did actually have to stop the meds before I went to have the tests done.
Everything is an on going horror show.
You would not believe the half of it.
I could write many books on it.
You write very well. You could write a column for a paper or an article for a magazine or make a podcast....
Thank you!! I have had thoughts along those lines many times, but the truth is I just would not know how to go about it.
You could start small, if you haven't already, by making a blog. Wordpress seems a good site. Here's mine, such as it is: anhaga1.com/
A month ago I received my one and only prolia injection. Yes I now have thrush. Prolia does affect your immune system, this is serious business. Thrush is only 1 of the MANY side effects I am having. The treatment for thrush does take a while to work. I have decided to try a detox and an immune boost vitamin I.V. At this point I am trying preventative. I wish you all the best. I will let you know how I am feeling after each of these treatments. The detox is today.
Sorry to hear that you too are having these horrible side effects. These things affect daily quality of life.
Let me know how you get on with the Detox and the best of luck with everything.
Are you in the UK? If so, could you ask about strontium ranelate? It isn't suitable for everyone, but ok for most and may not give the same side effects.
Hi, yes I'm in the uk. Strontium translate was discontinued in the UK then reintroduced.
It was discussed some time ago with the specialist but they did not want me to go on to it because they said it does not allow correct readings of the dexa scans.
I don't know if many people are aware of this.
Thank you for reply hope you are well at the moment.
I believe there are a lot more potential side effects with the manmade (and therefore patentable) strontium ranelate than there are with the naturally occurring strontium citrate. I have used neither, although I suppose there is some strontium citrate in our food and I think in some non-prescription bone supplements. What strontium does is replace calcium and as it is heavier than calcium it gives a denser reading.
Yes, it makes bones more dense, and some claim they're no stronger, but there's lots of evidence that it does improve bone strength too and reduces fracture rate. ncbi.nlm.nih.gov/pmc/articl...
Thank you. I'm not sure but does this treatment present a problem for people with Heart conditions.
If so, then at the time it was discussed I was on 3 heart medications and the doctors did not want me on it.
I may be confusing it with another treatment I'm not sure.
Ah yes, unfortunately it isn't suitable for anyone with an existing heart condition. Oh dear, you really are stuck between a rock and a hard place, aren't you? I wonder if there's anything that will improve your immunity? Do you take a high dose Vit D (with co-factors) as that is meant to be very good for immunity?
I've been told that my vitamin D levels are such that I do not need to supplement them. I have never had to take supplements perhaps it's because I have always been a sunworshiper!!
Do you know what your blood D level is? I ask, because many GPs say our levels are good when they're scarcely in the normal range. My GP actually told me my level was OK when it was below the recommended lab range and this was in November when our levels are dropping and will continue to do so until the following summer. It is now recommended in the UK that all adults take a Vit D supplement in the winter months because most if not all of us are likely to be deficient then. It isn't possible for us to make our own Vit D from the sun's rays then, because the sun is too low in the sky. Where I live at this time of year I have to be outside close to 1.00pm (when the sun's highest in the sky - British Summer Time means this is an hour later than noon). Our shadow has to be shorter than our body for us to be able to make Vit D from the sun's rays. Most of us also become less efficient at making Vit D from the sun as we age - last summer I spent hours in the sun without sunscreen, so reduced my supplement, yet my levels still dropped! The "normal" NHS range is usually 50-150nmol/litre, though some labs have now increased this to 200 or even 250. I was advised by an orthopaedic consultant, due to my osteoporosis), to get my level over 75 and preferably 100, and another (better informed) GP recently also recommended 100nmol/litre. Vit D plays an important role in the absorption of calcium.
I will be asking this when my next blood tests are done.
I did not realize but I am actually getting vitamin D from a multi vitamin I take and also from some food supplements that the dietician has me on.
I'm taking 4000iu daily to keep my level over 100 nmol/litre. Plus K2 and magnesium to send calcium to my bones (you absorb much more calcium with higher levels of Vit D).
Sunseaandsand- We would hope that all tests have been taken as necessary but there is rationing of resources in operation within NHS and it is very possible that you have not been tested for some autoimmune conditions which predispose to bone loss. Some of us with autoimmune conditions have gone ten years waiting for diagnosis which has finally been reached through "incidental finding" There is also a possibility that a pharmacist could look at your entire medication and supplement intake to gain an overview of what, if anything pharmacological, could be changed or stopped to improve your situation. I hope this helps.
Sunseaandsand in reply to
Thank you for taking the time to reply to me.
For years I have been pushed from one department to another.The lung specialist I have seen for years had always thought that there is an autoimmune problem but all tests have come back negative.
I do have a tendency to lymphopenia ( well that's on my hospital letters) not explained though and ANA levels rising, the latter also on previous letters.
Never had diagnosis for unexplained symptoms.
in reply to Sunseaandsand
-were you tested for autoimmune hepatitis?
Sunseaandsand - people with PBC, 60-80% of us test positive for AMAs and of those with antibody-negative PBC, 80-100% test positive for AMA's. Some people remain asymptomatic so it is often only on a check for something else that it may be picked up. And this is just one autoimmune disease. There are many, and usually if you have one you collect a few others with the passing of time. I wish we had specialist diagnosticians who would look at the whole body and its systems before decisions are made and treatment plans implemented.
I hope you were able to have some pleasure from your holiday?
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