I was told today after 19 months of teriparatide that it had had no effect on me. (This is apparently very rare, so please don't worry if you're on it. ) Nor did alendronic acid before that.My doctor was unable to suggest any reasons why I should have failed to respond to two types of treatment that work in completely different ways.
Can anyone shed any light? As you can imagine,,I'm feeling pretty gutted and very anxious about the future. Thanks.
Have you had blood tests to rule out things like hyperparathyroidism (not the same as thyroid), absorbency issues like coeliac and any other underlying causes that might cause you to have an above average rate of bone loss?
I insisted on some blood tests to get P1NP bone marker results and was sent for more this morning. Not sure what they're looking for, nut will ask doctor to go through them with these things in mind. Thanks.
Jemima48 dont be anxious, things will be ok. Keep in touch here and let's know the results. Wish you all the best
I agree wity Met. There's a long list of possible causes or contributory factors to OPorosis and they should be examined before treatment. And of course causes and contributions which have not yet been discovered, or are only suspected, not established.
Sorry to hear that I had no luck with AA and now on Teriparatide 4 months in. I think it's absortion issue tbh you would think the consultant would check these things before giving us loads of meds. Sorry this has happened to you. Please keep us updated x
He did seem to think yesterday thst some sort of test should have been done when I first presented thst there was no record of. Didn't recognise the term and now wish I'd asked him to spell it out as I was making notes. It's so important to record everything. If I'm just unlucky it's one thing, but a lot harder to bear if it's down to a cavalier approach.
I was told that the bone density in my spine hadn’t improved after 2 years of teriparatide but when I had a REMS scan Nick Birch said it had, significantly, and the dexa was inaccurate as I have also developed scoliosis.
May not apply to you of course but may be worth trying a REMS scan? Nick is brilliant and takes ages talking things through and advising. He also told me to double my vitamin d dose.
I also have a REMS scan with Dr Birch as he seems to know his stuff. Going by what people are saying once having one it's definitely worth every penny
Thanks for all your support. Contacted a place in London about a REMS but they didn't get back once I told them the extent of my metalwork. Now too late for a before and after of the teriparatide, but would be worth getting a reading, if I could. Where is Nick Birch, please?
He travels all over the country. If you look up ostoscan it will let you know where he will be at certain dates. The only appointment I could get was October this year. Going by what I have read he definitely knows his stuff. Good luck in getting a appointment even if you need to wait a while like myself
Many thanks! Will certainly try.
Hello Jemima48.
When I was told I had osteoporosis,I did loads of research and found out I had hyperparathyroidism…(nothing to do with the thyroid).
The surgeon who removed the little gland that was affected told me that no amount of osteoporosis medication would have done anything, all the time I had this.
Definitely worth ruling this out, with a simple blood test.
Good luck,
Fran 😉
Definitely! The rheumatologist mentioned some test and seemed to be scanning through the records to see if it had been done (presumably not). I was in a bit of a state of shock, but think he said something about a small gland behind the thyroid. Would that make sense?If so, all that teriparatide wasted needlessly and I only have 5 months of it left in my 'pot' - IF I'm allowed to do a separate 5 months of it at some later date.
I'm really hoping this isn't the case, but I'm finding it hard to trust the rheumatologist completely.
I’m sure you’ll do your own research, but I believe there are four small glands that are near the thyroid. If (usually one) any of them needs to be removed, it’s best to get it checked out. I was so glad I found out about it ( my GP did not know and said she was glad I told her).
I have chosen ( so far at least) not to have any medication. It is something I may regret one day, but I have had about 7 years without it.
It was a massive shock to me ( and most others) to have been diagnosed with osteoporosis. I hope some people here can allay your fears…they were very helpful to me.
Fran 😉
Thank you, Fran. I clearly need to ensure that the blood I had taken on Friday will be screened for PTH as well as Vit D.Hard to know whether we've made the right decisions, but hope you continue well without the meds.
So grateful for all the responses and support. Helps to know you're not alone!
Hello Jemima48,
Agree with others about getting other things ruled out as a next step.
i'm not the same I did have a very small improvement in one area, but what the Consultant said might be of interest - I had a two year course of daily injections of Forsteo, then a year of an Infusion of Zoledronic acid, (the Zoledronic didn’t suit me, had an eye problem) During that time I had very very little change on dexa scan results, the Consultant assured me not to be too disappointed as it sometime takes much longer, the main thing was I had not had any further fractures and I hadn't lost anything . That was 2018 -2021, the next scan was last year when I did have a big improvement.
If further test don't indicate other things thyroid etc. then as your doctor was unable to suggest any reasons why, surely you should be referred to a Consultant who may be able to you and your doctor manage your osteoporosis .
Have you try phoning the ROS specialist nurses on the helpline, to see how rare this is / what others have done/ which medications others have tried etc.
I hope you are able to get some answer and help soon.
Best Wishes, Posy White
Hi Posy-White, I was told it's only 4% who don't respond.I've been saying doctor, but he is a consultant rheumatologist not a GP, so unfortunately I'm already at the top!
I've always found the ROS nurses knowledgeable and helpful and may well call them about this.
Glad you've seen an improvement after such a long wait.
Gosh I'm sorry Jemima48 I had thought you had been seeing a GP - which was why you hadn't had the various blood and other tests. Please do keep us all posted, what is the doctor suggesting you do next?
Kind regards Posy White
Zoledronic acid infusion. They have to wait till my Vit D levels are up. This makes me wonder if low Vit D stopped me absorbing the teriparatide and why in that case I wasn't being monitored? Why do they resist blood tests so much???
I'm sorry to hear that Jemima, I also took AA without it helping for over 4 years, had several spinal fractures whilst on it.They wouldn't let me have the Teriparatide as my scores aren't severe enough so I've had a Zolendronic Acid infusion instead. The Teriparatide is very expensive and rigidly controlled.
Please keep us updated, I'm really interested as it hadn't occurred to me that maybe the ZA infusion wouldn't work either, it's 3 months since I had it and my vertebrae don't feel as if they've healed at all. The Dr upped the morphine yesterday 🤷🏻 I suppose we're all different and some folk don't absorb things as well as others.
I can understand your feelings being apprehensive about the future.
Have you fractured since you were on theAA or Teriparatide?
Sorry to hear you've had such a rough ride, Cinnamon. I have never had fractures, but one and possibly two crushed vertebrae (while between AA and teri).Not feeling my case has been handled at all well, with insufficient testing before and during treatment. In fact, if I hadn't insisted on a DXA 18 months into teri, I'd have been injecting uselessly (and possibly damagingly) for a further 6 months, delaying my next treatment by even longer, as my rheumatologist wanted to wait till the end of the treatment. Unfortunately, most of us l can't rely on our doctors and need to be very proactive!
Hi CinnamonRose (great handle!), you said your scores weren't severe enough for you to be put on teriparatide. Would you mind telling us what they were?I'm puzzled that I'm -3.8 at the hip (they can't read the spine, but say it's normally worse than hip) and classed as 'severe', but have had only one definite crushed vertebra and never broken a bone despite some quite hard knocks and one fall onto my knee which tore my jeans and thick tights and left me bleeding heavily.
Wondering if DXA properly tests actual fragility of bones and if medication is targeted at the right people 🤔
My worst score is femur at -1.5🤷 my spine was -1.0 and yet I've fractured 6 and refractured a previous oneI was told that I have fragile bones but unfortunately my scores aren't bad enough for Teriparatide. They did try, they asked if it could be given but whoever the person was at the top said that the guidelines couldn't be overridden.
The last 3 fractures I did simply by turning round whilst still sitting down to grab my bag off the backseat I'd the car, something I've done countless times, nothing more exciting than that🤷🏻
I've just now this weekend been told that I can have Radio frequency Ablation to see if it helps the pain.
Oh, what bad luck! It does say for TP you have to be over 65, with low DXA score and have broken three bones. I only ticked the middle box, so looks as if the scores are what they really go on. It does actually sound as if your bones are more fragile despite my terrible scores.The measurements of bone strength/density/quality (all different) seem very approximate and have a long way to go IMO. Really hope they can find some better treatment for you.
Please please demand your doctor run a PTH, blood calcium and Vit D labs on you. Note, just running them once will not do...I had to take on running my labs myself, as my doctor refused past one. The body is very very good at keeping calcium and PTH in a normal range....but note too, the calcium normal ranges in labs has a critical error, it it mixes children with adults..no adult over 35 should ever, ever have a calcium over 10.0. My body was excellent at keeping it in range, until the PTH blew past 100...but my highest calcium was 10.4, once. PTH is parathyroid hormone, and if you have a condition called hyperparathyroidism, and a tumor on one of your parathyroid glands, there is no amount of OP med that will help your bones. I had one, it has destroyed my spine...10 fractures and 4 fusions, with 4 more discs nearly gone. I have many surgeries left to keep me upright...I also have extensive nerve damage, I've had nerve transfer surgeries in my legs, tibia nerves, both hands/wrists have had surgery. You need more than one lab, I moved to once a week, and found the patterns...then I called the Norman Parathyroid Center in Tampa FL, and self referred for surgery. My doctor would not listen. There is also a tremendous risk of stroke and heart attacks...even with a calcium of 10.1-10.4, where mine stayed, and was considered "normal" per lab ranges. My OP got diagnosed when I was mid 40s....nothing controlled it...until that thing was removed. Now I'm making gains back to normal bone density.
Wow, Southern girl, what a story! That is shocking and I so sympathise.I have taken careful notes of your recommendations and shall press for these. When I asked why I hadn't responded to medication, the doctor simply shrugged. The quickest internet research throws up many sites mentioning Vit D, which I am low in. Why wasn't this monitored, for a start?
Getting P1NP tests has been like getting blood out of a stone. Despite previous scores he admitted were too low, he wouldn't order a second round until I got my GP involved.
This disease is bad enough without doctors taking this cavalier approach.
More than shrugging their shoulders, most simply don't know enough, past which drug to throw at you, and thinking that's that...one male Endo told me he simply wasn't interested in bone health...the money is in diabetic treatments. Even when you find a "bone specialist" they are self-pay and very expensive. Read up, research, and you'll be far ahead of most doctors in this game. I was in healthcare 30+ years...the truth is the doctors will do nothing these days without payment, in some form or fashion, and they will not cross their licensing groups/boards and go against the "protocols"...it's a sad state when doctors give up their curiosity and objective individual research. It's too easy just to write the Big Pharma scripts and go on to another patient. The Norman Center has an excellent website, Parathyroid.com....it's a wealth of education.
So true! In fact mine seems to have published mainly on diabetes. He hadn't heard of REMS, which there are several medical papers on, and didn't know strontium ranelate would be available again in August (the ROS nurses told me that). It's not good enough and we must keep pushing.
You poor soul, that sounds ghastly, I take it that you're not UK as you say you self referred for surgery. You've really been through the mill.How are you making gains back to normal binge density? That does sound really positive
Xx
No, I live in Texas, USA. Working in healthcare 30+ years did give me a unique education, and working with doctors gives you the knowledge that they are simply human beings, some being as useless as others we know. Yes, I charted my labs, when I saw the patterns, I researched and read for hours. I realized what was going on and the danger I was in. I set up a consultant with Norman Center, sent all my records, they also have an APP you can use to help. Had a phone appt with their surgeons, and they confirmed it was 90% chance, and got me scheduled. The radiology testing is not good for identifying these things. So my bone density started to come up on it own, within 3 months of removal...I was against any first line OP med, as I have many drug allergies and autoimmune conditions. I was actually back to osteopenia levels from DEXA, three years time...diet was primary protein, animal protein, healthy fats, no seed oils, no sugars, no grains, no starches...some veg, more fruits, nuts, eggs, cheeses. Work in the garden/yard daily, walk 3-4 miles a day, I use hiking poles to go faster and give upper muscles a work out too. Surgeon allows low weights, and bands as well. I'm out in the sun, at the solar noon daily, keeping the Vit D levels from 60-80. Then my fractures started from a hard landing in a plane, T7...it cascaded down. So neurosurgeon put me on Tymlos two years ago, and that has increased the density quite a bit. DEXA testing won't run another one, they say it's not going to be accurate...but surgeon says the bones are at least 50% more dense, he has done many surgeries on the spine, and is pleased with the results. I am also taking low dose Strontium, Lactoferrin, Silica, and a probiotic from BioGaia for bones.
My first thought too, that your doctor might have missed some important tests.
So sorry to hear. I took 3 days of Teriparitide and had an allergic reaction due to the chemicals and acids. I argued with the osteoporosis doctor that no chemically based treatment would work. She then asked if I'd try alendronic acid to which I replied I would go back on my previous oral medication of Risedronate Sodium. Regret she didn't like being told and I cannot believe the incompetence of the clinic. 7 months later I got nowhere!
Reaction to AA and now to Risedronate
No bone meds, what’s next?
Not sure what to do, help please
worst fears seem to be coming true.
DEXA results error due to incorrect positioning
