What have people taken after finishing teriparatide? I have a potential problem now as my DEXA was due on Monday which would have given me time at least to discuss a follow on with the specialist nurse.
But of course it’s been cancelled 😠 and I can’t get one till 24 October when I will have finished the teriparatide about 3 weeks earlier.
I’m very doubtful about bisphosphonates. I couldn’t even take BP medication without a PPI (so now don’t take it). And I have a broken tooth but because my dentist just took everyone off their NHS list during covid (apparently my fault because I didn’t contact them) I can’t now get NHS dental treatment till January.. I absolutely cannot afford to go private.
Obviously I don’t want any more fractures either! It’s a pickle.
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Nuthatch
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What about a bisphosphonate annual infusion? Who are you under for the teriparatide? Your GP or a hospital consultant? Either way, if you need a follow-on drug you need to discuss this with the relevant doctor and get something in place. You could also talk to a specialist nurse at the ROS: theros.org.uk
thanks. My understanding is that getting dental work done before the annual infusion is imperative. I’m supposed to be under the bone clinic in rheumatology but they forgot about me for 2 years and I can’t get a quick appointment with them.
Is it worth your contacting PALS at the hospital and explain why it's urgent for you to be seen and the fact that they forgot you for so long? I don't think one bisphosphonate infusion now would preclude dental work in January, but am not totally certain about this. Likewise, it would probably not hurt to wait till January to be given an infusion; as far as I'm aware, there isn't the risk of rebound fractures with teriparatide that you get with denosumab. I'm sure an ROS specialist nurse could confirm the ins and outs of all of this.
I’ve read that you need something without any delay after teriparatide but I’ll check. I really didn’t want to end up having to make a rushed decision. As a republican I’m less than impressed with all this palaver.
It would definitely be good if it’s safe to leave it a while after finishing the teriparatide!
I finished teriparatide in March of this year and didn’t start Denosumab until June. The consultant said it was good to have a break but I had read it was better to start Denosumab immediately. They tried to get me to self administer but I found it very different to the Teriparatide pen so I’m going to the hospital in December.
I feel very. much on my own but I think that’s how it is these days. Emphasis always on COVID.
Thank you. It’s so inconsistent - I found the original letter from my consultant (horrible man) stating it’s vital to start something else immediately 🤷♀️ How on earth do we take responsibility for our health in these circumstances?!
Hi Nuthatch. You have the problem I will have next year when I complete 2 years of Teriparatide. Apparently one needs further treatment to “lock in” the improvements which the Teriparatide should have made to the bones. I certainly won’t go down the Denosumab route because of the relatively high incidence of rebound fractures, as I understand it. I don’t want biphosphonates either and wonder if strontium is a way forward and other supplements? I’m no expert on this!
I think it's terrible they have cancelled so many routine procedures etc., on Monday at the hospitals, life goes on for the rest of us and in our situation, we don't have the luxury of a private medical team on hand 24 hours a day!
I am due to finish teriparatide the latter part of October. I had my DEXA in July and the results weren't as good as I hoped. Only a 4.6% improvement in my spine, better in the hip though, at 6.5% which I think is unusual for this treatment. I have had follow-up and a phone appointment with the fracture liaison nurse and had a blood test in readiness for starting denosumab during November. Apparently, a follow on treatment should start 4-6 weeks after finishing Forsteo at the latest. I am very unsure about Prolia though. I was hoping the teriparatide would gave improved my spine more, but because it hasn't this is why the MDT (multi-disciplinary team) have decided I should have Prolia. I am also due to have an x-ray in 10 days because I am sure I have another thoracic fracture...😒
I do hope you can get sorted soon. Perhaps you could explain the situation to your GP and ask them to arrange a DEXA asap.
They can’t make a decision for you - it may be their advice to have denosumab but it’s absolutely your choice. Have you asked them for alternatives? I’d have been fobbed off with alendronic acid if I hadn’t insisted on discussing alternatives which led to getting teriparatide. I know people think I’m sometimes unnecessarily arsey but I’ve found (as a woman and now even more so as a mid 60s woman) that health professionals can be very dismissive and unhelpful.
I was originally told I would need either Prolia or the bisphosphonate infusion after Forsteo came to an end, a rock and a hard place I think choice-wise. My BMD is very low and I've had several fractures already so (even if I could take the tablets, which I can't because of digestive issues) they wouldn't be adequate. I was offered the bisphosphonate infusion two years ago but after doing my research on the treatments and speaking to my consultant, he was happy to prescribe Forsteo.
Sorry that Forteo and your body didn’t increase your bone density more.. my density increased by 12 per cent and then was placed on an annual infusion for the next three years. Now due for my second six month PROLIA. As my jaw and dental conditions are both in very good condition I am not concerned about the rare side effects regarding jaw bone problems reported regarding Prolia. Appears from your term FORSTEO you may live in England. In the US it is FORTEO but due to the impact of the COVID 19 overall, it is more difficult to set a doctors appt. I was very ill several weeks ago and couldn’t make my rheumatologist appt and am on a waiting list. However tomorrow I am going to show up at his office, determined to get another appointment before the six months run on my required Prolia injection After all the expenses and effort over the last 5 years of injections and infusions. I refuse to lose ground because a doctor is too busy to do an injection now. I had only one fracture when starting Forteo and none since.
Hi there , I also need to think about what to do after finishing Forteo ( it’s not called that here in the UK) I have heard terrible reports from folks that have gone on to Prolia - have you had any side effects ? It’s encouraging to hear you have had no further fractures . x
HELLO! In England, you are correct, Forteo is referred to as FORSTEO. After my completion of it, I had an annual infusion of another med for three years. Now Prolia. There is so much mixed info and rampant fear on social media about any of the helpful meds, Isn’t there? With Prolia it’s that radical scare of rebound fractures jaw bone issues. I had a good through checkup with my dentist before any new osteoporosis med to be certain no dental issue needed to be addressed regarding tooth removal or anything showing up related to my jaw. I have no reaction from Prolia and neither has my sister. Just confer with your doctor on how long you may be taking it and what would be your medical plan when you stop. I am so pleased you had FORSTEO available to you as outside the US for quite awhile other countries weren’t using it. Nothing else in the world works in the approach it does and Eli Lilly corp in the US has the sole patent. Enjoy your progress and trust your doctor. Best wishes for continued success ❤️😁
Thank you so much for your reply & so good to hear that both you & your sister are tolerating Prolia well . I have another few months to think about it 😊
Hi! When I came off Terraparatide there was only a matter of a week or two before I was put on to Denosumab. I did however have four more wedge fractures because of the changeover. I couldn’t take Alendronic Acid. I only took one and was violently sick. I’ve now been on Denosumab for more than two years and am absolutely fine on it. My bones were really bad to start with so this is why the wedge fractures in between. They started at -5.5 and are now -4.2.
I obviously had to have something. I’ve had a total of seven fractures in my spine.
gosh I’m sorry to hear you had more fractures in only a week or two. This is why I’m worried that I will finish the teriparatide before I even get a scan! And now the option to speak to the specialist op nurses has vanished off the clinic phone menu 🤷♀️
it doesn’t follow because I had four more fractures that you will. My bones were really bad. I never even knew until they started breaking. I’ve always had good food so I couldn’t understand why they should go.
I have no idea why I developed it either. None in the family that I’m aware of. I ended up with fractures because gp was useless, insisted I had mechanical low back pain, implied I was putting it on to get more painkillers (had horrendous muscle spasms in my back) and refused to send me for an x ray for nearly 3 months. If I’d known earlier I could probably have avoided the fractures as I was doing entirely inappropriate exercises. At least I can still get around and walk the dog etc but would like not to have to live with some level of back pain as a constant!
me too would like to live without pain but I can see that it’s not a possibility now. Have you tried speakingvtobThe Osteoporosis Society. They are brilliant andcwill point you in the right direction.
May help to look at LiV. Great reports and results. mybones.health/ I love it as I don't have to take or inject snything. Fingers crossed things improve for you 💐
A class IIa medical device, certified by the British Standards Institute to do what it says on the box! Never having to worry about the effect meds are having on your quality of life. Mine, with VAT relief for a diagnosed chronic condition, osteoporosis, saved me £499.17! Purchase via PayPal (there are different options) or credit card splits the remaining £2495.83 (Ipaid) into a doable purchase. I would not be without mine, went without a number of other 'wants' to ensure I was looking after me. Selfish, nope, not looking after me would be. I'm making sure I'm in great condition for years to come........ and to have a great quality of life, not fraught with fear of a fracture or feeling too darn ill from medication to live a happy life. A 5 year warranty gave me all the security I required. Yes, best investment ever. Me!
that’s good and hope it continues, also great the machine works for you. With severe osteoporosis and at least 5 compression fractures I wouldn’t rely on it! Sadly I definitely need some sort of medication and at least it’s free 😊
Although the improvement teriparatide gives you does decline afterwards I haven't heard that it can cause the same catastrophic rebound OP which has been associated with denosumab (Prolia). I think you have more time. But do check with the experts, and be a squeaky wheel if you keep getting put off. Good luck!
I’m more of a squeaky tank 😂 the clinic has taken away direct access to the specialist nurses and I had to be triaged by an admin worker who was not especially pleasant or helpful. But it is a Friday afternoon so she’s probably had a horrible week with people complaining about their Monday appointments being cancelled! Apparently one of the specialist nurses will ring me next week. We’ll see. The ROS nurse was fantastic -really helpful and reassuring.
It may be worth contacting the specialist's secretary and ask if you can be put on the cancellation list. I have done this with several clinics and always had a quicker appointment.
It would be useful too to ask if you can have an appointment with the maxillofacial team who practice dentristry in hospital as you are obviously in need of urgent dental care before continuing further osteo treatment.
Explaining the urgency and the inability to get an ordinary NHS dentist appointment with your broken tooth, which could cause jaw problems in the long run should help. Again, ask to go on the cancellation list.
Your gp may be able to arrange to fast track this if the osteo department is unwilling.
My own long term experience with the zolendronic acid infusion has been favourable and my back certainly feels so much stronger, so I wouldn't dismiss that option.
I can always ask but the standard and availability of any health care round here has nose dived. It’s awful because it used to be really excellent. As a former NHS worker I do feel for the people struggling to try and keep it going in awful conditions. Just wish they weren’t so snippy and defensive all the time.
Were your teeth ok before you started though? I won’t have denosumab. The ROS nurse suggested 3 alternatives to bisphosphonates so I’ll try suggesting those if I ever get to see/speak to someone! Gearing up for another trying fight with them though..
Before agreeing to start prolia, ask what relay drug you would go on, and make sure it's something you can tolerate, in case you have to stop prolia any time. It may be intended for life, but nobody can guarantee that will be possible.
Quick update - my DEXA was brought forward to yesterday. The bone clinic nurse rang today - only a small increase in my bone density which is disappointing but better than nothing! And no further fractures which is good news especially considering how much I do. She’s asking to GP to prescribe Raloxifene to start the day after I finish the teriparatide, then they’ll do bloods in November and see where I’m at. I’m still going to push for strontium at that point as it’s my preferred option. But at least Raloxifene is said to protect well against spinal fractures and my hip is better than my spine in any case - and (famous last words 😂) I’m not at risk of falling.
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