Teriparatide

[Teriparatide2024]

I finally decided to stop the daily injections, even if just for a drug-holiday. so last night no injection. The relief was instant. I had more strength to go to bed. Was not dizzy anymore and my low mood had vanished. No leg cramps overnight, and I feel rested this morning. 100% better. The side effects of trpt awful for me. Now, of course, I’m scared of which to choose from: denosumab, zoledronic acid, or romosozumab. Which will have the mildest side effects? I tend to always get the common side effects of any medication…….

[MayGodBlessYou]

glad you found some relief. teriparatide can't be stopped suddenly, without the next drug;

how quickly can you consult your doc?;

do you have the injector pen that's adjustable? 8 clicks. so the settings are 12.5%, 1/4, 3/8, 1/2, 5/8, 3/4, 7/8, full dose.

found out after Mum had to stop taking it (like you) that having a 3/4 dose might've been possible; found that out in consultation with 2nd opinion. but yeh there was no mention by anyone before that.

take care.

[bellybuddie]

how long have you been on trpt?

[Teriparatide2024 in reply to bellybuddie]

nearly two months.

[bellybuddie in reply to Teriparatide2024]

have you been drinking enough water? 2000-2400 is needed. also check your blood pressure frequently. some ppl inject before bedtime to avoid the dizziness after injection. the side effect subsided after couple of months for most ppl

[Teriparatide2024 in reply to bellybuddie]

Thanx. Yes, I drank plenty of liquid. And did the injection at night: if too near bedtime I had terrible night, so had time on sofa with hot drink between injection and bed. Had really blocked nose at night which was not good. But the worst was the bone pain and dizziness and depression. Also, I found the heart irregularities just after the injection quite alarming! Apart from considering other options, one would be to go back on the Teriparatide after a break? Another would be not to have any treatment. I have T3 and T4 fractures. Also smashed my wrist badly, and low-impact fracture to other wrist 10 years ago. I’m thinking: surely quality of life ranks high, so if these injections cause awful pain then _ ?!

Surely all the injections will cause pain, whether promoting osteoblasts or preventing osteoclasts’ rapid reduction? It must be that the bone balance reacts with pain?

I hope Posy-White reads this as well, as I forgot to answer some of her questions.

[Posy-White]

Hello Teriparatide2024,

So glad you are feeling better. It's very difficult to know what to do for the best, but I would urge you as MyGodBlessYou to seek advice about the next step fairly quickly. These things always take a little time to get appointments etc. but in the next few weeks you need a plan.

You mentioned that you had been on Teriparatide for nearly two months, it seems that many people who are offered Teriparatide are because they have had a number of fractures already or considered at high risk of fractures. So I'm guessing you you might also be considered at a higher risk?? (I was when I started my two year Forteo course)

Have you seen the ROS website leaflets on the different medications, you might find them helpful to work out what you feel is you next best drug to try. The information explains about the different types of drugs and gives details of side effects. Or perhaps phone the helpline to talk with a specialist nurse 0808 800 0035, as well as getting peer help from this site.

You mentioned denosumab, zoledronic acid, or romosozumab is that because those have already been discussed as possible ones to try? They are all quite different ones, e.g. romosozumab is a the present only given for one year and I think it’s that one which is / has been a UK post code lottery. Zoledronic acid, in ‘lay terms’ is more of a ‘holding drug’ and it might be considered you need something a bit more ‘active’ hence you’ve been on Teriparatide, equally Zoledronic acid could be the one to choose as a covering drug whilst you take time to consider what next. Prolia denosumab doesn’t have many fans on this site, many people have been helped by this drug and their scan results show good improvements, however a few have had bad side effects.

Good luck

Posy White

[Teriparatide2024 in reply to Posy-White]

Thank you. Do you know how people tend to get on with Zolendonic Acid in comparison with Denusomab? I mean in terms of side effects.

[Posy-White in reply to Teriparatide2024]

Hello Teriparatide 2024,

My understanding is more people seem to have issues with Denusomab I am basing that on peer posts on this site.

I personally didn't get on with Zolendonic Acid, had the either the very very rare eye problem, or some eye problem within 6 hours of the infusion that then lasted for 4.5 months and I had no real side effects with taking Denusomab. I did have issues with Denusomab when the local hospital said I should have a drug holiday (this was back in 2017 when not all little hospital knew not to just stop all OS drugs) from always being fit and fairly healthy to long term disability caused by 8 spinal fractures 4 months after stopping Denusomab.

Kind regards

Posy White

[Teriparatide2024 in reply to Posy-White]

Thank you post-White.

It’s a minefield. And I am one of those people who does in-depth research.! sometimes I think ignorance is bliss!!

I wonder how many people have had side effects with the Romo drug…

I live on my own, I’m really can’t be doing with serious side effects, like eye problems or jaw problems, etc. I’ve been through a lot of trauma and my life, and don’t want more now….

[Posy-White]

Hello again Teriparatide2024,

You must forgive my reply, I’m sure as some one who does in-depth research you’ll know all that ROS has to offer and you were looking for peer information.

It IS a minefield and at the end of the day making the choice is up to us.

I do want to reassure you that the problem I had with Zoledronic acid is very very rare, the side effects with the others are greater. I didn’t find anyone else who had eye problems with it and I have slight eye problems which probably didn’t help.

I had Zoledronic acid and it was planned that I’d have it for two years only because at the time I was frightened to go back on to denosumab – this was at the start of Covid and I just worried what will happen if the hospitals are so busy with Covid and I can not get to the hospital on the mainland for the injection etc. I don’t want to risk more fractures with a late / missed denosumab injection.

Are you able to take tablets (I’m not due to diet problems) the reason I ask is if you have a problem with the Zoledronic acid infusion or the denosumab injection or Romosozumab they are ‘in your body’ for longer. Yearly / 6 monthly treatment. If you had a reaction to a daily tablet I’m not suggesting they’ll stop the next day but it might be a better short term option when you know that some of these medications have caused you problems.

Good luck

Posy White

[Teriparatide2024 in reply to Posy-White]

Thanx Posy White. 10 years ago I had problems with all the various pills. They caused gastric problems. That’s why I am now looking at injections. If I went for the Romosozab, I would have a month at a time to see how it went? Maybe for that reason that is the one to go for…..

Conversely, when I took the orals, I took a biphosphonate and I don’t remember it giving me horrendous side effects (other than the gastric ones). So it’s possible that the.zolendronate, which is a biphosphonate, might be OK…. But of course, if it isn’t OK I’m stuck with it for a year.! I need to reread the side effects for the Romo again.

are you aware of anybody having posted on this site about how the Romo has affected them??

[Met00 in reply to Teriparatide2024]

Teriparatide, you need to be aware that Romosozumab is only prescribed for a year, after which you have to relay onto another medication, either denosumab (which in turn has to be followed by a bisphosphonate if you stop it) or a bisphosphonate! They only prescribe Romosozumab for post-menopausal women who've had at least one fragility fracture.

[Teriparatide2024 in reply to Met00]

that would apply for me - several fractures. My understanding is the Romo is prescribed yearly, but not just for one year?

[Met00 in reply to Teriparatide2024]

Sorry, no, it's monthly injections for 12 months, then you have to go onto something else. Zolendronic acid infusion is an annual infusion for 3-5 years.

[Teriparatide2024 in reply to Met00]

Oh yes. Thank you for reminding me. What if one had it for 12 months then stopped? It's not like stopping Denusomab is it?

[Met00 in reply to Teriparatide2024]

They don't know for certain yet, so are perhaps being cautious after the dreadful repercussions of stopping denosumab without a relay drug. I'm not sure, but I believe part of the way it works is similar to denosumab, so the risk could be very real.

[Posy-White in reply to Teriparatide2024]

Hello Teriparatide2024

So about the delay in responding, I've been think and trying to check re your question about if I was aware of anybody having posted on this site about how the 'Romo' has affected them. I can only remember questions about funding and trying to access it. The side effects, to be honest like all the 'stronger' bone drugs aren't great but as you say it's one month at a time and not 6 months or a yearly drug.

I have not been about to find anyone else who had any form of eye problem after having the infusion of Zoledronic acid.

I'm now seen by a consultant at a large teaching hospital, I was told that it is now considered safe to stay on denosumab long term. Things develop and change all the time, if you do go on to Romosozumab and find you can tolerate it, in a years time your options might have changed, plus you can be doing research on denosumab and Zoledronic acid in 7-9 months time, so with luck things will not be as stressful.

Best Wishes Posy White

[HeronNS]

Although I cannot answer the specific question posed here, I just want people reading this thread to be aware that drugs like denosumab and romosozumab appear to weaken the immune system, so it's all very well to say one can stay on a drug like this indefinitely, in reality it may not be wise to do so. Romosozumab, you probably already know, should not be administered to anyone with a heart condition. Sorry, it's just more to think about when making decisions.

I found a very detailed research article which addresses some of the concerns around bone medications. Not having a medical degree it's all beyond me, but statements in the conclusion are clear enough.

ncbi.nlm.nih.gov/pmc/articl...

[Teriparatide2024]

Hi Posi-White and HeronNS

The article you posted the link for (HeronNS) is very interesting. Thank you very much. As you say, the Conclusion is interesting - especially the last sentence.....

I did stop the Teriparatide last Thursday. Some of the side effects left immediately: energy levels, less dizzy, better mood, could sleep better because body not fighting the intrusion. But one week later and I still have bone pain (not quite as bad though), and joint pain. Also, came down with bad cold (unlike me). So my immune system got run down.

As for next, mmm.... I'm concerned about the Romo because, although they won't give it to you if you have a history of heart probs, I feel it must therefore put a strain of some sort on the heart. And we only have one heart! The teriparatide gave me heart palpitations immediately after the injection...... I really wonder about all these medications. Some of the side effects, although not necessarily 'common' are serious. The other option is to do nothing. I might simply increase my Vit D3 up to 3000 IU per day, and have more probiotics (as that article suggests). I'm 74. Active. Walk dog twice a day. 55 kilos.

As I have severe osteoarthritis in both ankles, and also suffer from generalized anxiety, I have been on gabapentin for 7 months. Then upped to Pregabalin because not strong enough for the teriparatide side effects. Neither worked for the latter. And, I've been reading that gabapentinoids (gabapentin and Pregabalin) are not particularly good for osteoporosis. In fact, the older gabapentinoids apparently definitely affect the metabolism of vit D3. Hence my interest in increasing the vit D3.