teriparatide - support and side effects

[Swhippet]

I was diagnosed with severe osteoporosis after mri and dexa scans. I started the teriparatide injections a couple of months ago, after one brief telephone consultation with the specialist. I haven't been offered any follow up care or support - is this unusual? The hospital team said they didn't need to see me again until I've completed the 2 year course. (This is in the UK btw). My GP seems to take the view that he has done his bit by with the initial referral. I am struggling with nausea as a side effect but I really need to stay on this stuff because my thoracic spine is a mess (dexa score -6.1). I'd be interested to know if other people have been given any ongoing advice and support.

[Fruitandnutcase]

Welcome to this very supportive group Swhippet, although I’m sure none of us want to be here.

I can’t help you with the teriparatide questions but I was started on alendronic acid and after one phone call from a fracture liaison nurse that was it for me for five years.

I think it would be worth you making contact with the Royal Osteoporosis Society and speaking to one of their nurses I’m sure you will be able to get good advice from them theros.org.uk

[Motown_1960]

Hi Swhippet.

After discovering I had 7 fractures on my spine I was immediately put on alendronic acid after my dexa scan I had a phone call from a rheumatology nurse offering me Teriparatide which I’ve been on now nearly 6 months . Only thing she said was I’d get another dexa scan after the 2 years . Thankfully I’ve okay so far

[88km]

Hello

I took Teraparatide injections for 2 years (uk) , had initial visit from a nurse to show me how to administer & then nothing for 2 years .

I did have a couple of calls to the osteoporosis society nurses - they are super helpful & knowledgeable .

I also had nausea to start with , then I switched to doing the injections just before I went to bed - this worked for me & I had zero nausea when I woke up . I did have to pee about an hour after taking it so I tried to stay awake until then but worth doing it this way to stop the nausea.

I had good results after the 2 years .

Hope you do too x

[questionably]

Swhippet, I can't answer to care in the UK, but nausea can be caused by elevated calcium and is fairly common with teriparatide. You may be able to adjust calcium and/or vitamin D intake? Does the nausea last more than four hours after the injection? Would your GP order calcium labs.

If you can get the lab order skip the calcium the day before and the day of the draw. Don't have the labs drawn until at least four hours after the injection.

Fruitandnutcase's suggestion about the Royal Osteoporosis Society is very good.

Teriparatide can cause levels of calcium that are too high. Sometime the high levels indicate a secondary cause of osteoporosis in the parathyroid gland.

I hope reducing intake will help. If there were a parathyroid problem, you would resume teriparatide after the parathyroid issue is resolved.

In the first four hours after the injection, pth pulls calcium from the bones, back from the kidneys and increases absorption from the intestines. It makes the serum levels of calcium high. Sometimes your body adjusts after a few months and you don't experience nausea.

Another way teriparatide might cause nausea is because it dilates your blood vessels and your blood pressure drops and you can feel dizzy enough to cause nausea. A glass of water and a little salt just before injection.can help with the sense of imbalance.

I'd be wondering about secondary causes of osteoporosis because -6 is quite low.

I hope it works out for you, because teriparatide is the best medication for osteoporosis.

[Craftycreator]

Hi I completed a two year course of Teriparatide last July. I had blood tests every 6 months throughout my treatment. The hospital sent me the blood test forms and then my GP surgery carried out the procedure. The results went to my consultant for analysis. It was a good job these tests were done as they showed up I had too much calcium in mt blood which can be dangerous. The hospital told me to stop taking the Adcal tablets and just take vitamin d. I had another blood test after a few weeks to check things had returned to normal levels which thankfully they had. I would have thought you should be getting the same level of care. The blood tests also show bone markers which indicates how well you are responding to the medication. I would speak to your hospital about blood tests. A call to the ROS nurses for advice may be beneficial too. I’m still waiting for a DEXA scan though! I injected just before bedtime to mitigate side effects. The quantity of care given to osteoporosis sufferers seems to be a complete lottery.

Very best wishes and good luck with your journey.

[Teriparatide2024]

I had side effects too, so stopped for injections after seven weeks. . I too, by the rheumatologist that he would see me after the treatment. I did manage to speak to a nurse, but it any help. I moved on to Denosumab later, but had to also stop that after the first injection as the side effects were unbearable. So I’ve decided to not have any treatment. 🤷‍♀️

[Rooruby]

Sorry to hear your diagnosis I too have severe osteoporosis. I started teriparatide Nov 24 so about 4 months in I too was referred to osteoporosis nurse who decided on this treatment who was also supposed to check in with me after 2 months on medication to see how I was doing. However no call no follow up bloods which is supposed to happen after 2 to 3 months. I called the department and was told she was on long term sick and not to worry if injection s or going OK. I explained some of my symptoms such as nausea which she said will subside in time. TBH it is so frustrating and makes you feel very anxious we are just left. I have no trust whatsoever in the system.One thing I will say was I changed my injection from morning to just before bed which seemed to help.

Good luck.

[Dodda3]

I live in merseyside. I am just completing the 2 year terparatide course.i had a call from the hospital before the course after about 6 months and they called a month ago. My injections are delivered by healthnet and I can ring them for adviceEddie runcorn

[Mavary]

oh gosh I thought my bone score was bad at -5.5 but -6.1 no wonder you had fractures. Theres nothing more they can do while you are on Terraparatide. I was very lucky and didn’t have any side effects with them. If they become too bad go back to your Dr. And if you find you have more pain in a different area go back to your Dr. You are still at risk of a broken bone until your spine improves. There are other medications you can have. I must admit I had quite an improvement in my dexa scan after taking Terraparatide. Good luck o your journey.

[ROSModerator Partner]

Hi Swhippet ,

Just popping in to wish you a very warm welcome It's great to see you here in our community!

As other valued members have kindly mentioned, if you wanted to chat through your situation with one of our specialist nurses, we'd welcome you to reach out to our helpline: theros.org.uk/information-a...

Hoping you can continue to connect on here - it's important to be around people who understand what we're going through on our health journey

Wishing you the best,

Lulu

ROS Moderator

[Graceissufficient]

Yes, well everyone who had replied has more experience than me.

You were urgent, so put on meds.

But with no initial blood tests - that must be bad practice.

Initial blood tests look to rule out obvious causes, celiac, problems with the parathyroid, vit d deficiency. As Questionably says, there may well be a cause for your weak bones.

And no follow up.

Once you've spoken to ROS nurses, I would email or wriite to your GP laying out your concerns. It's more powerful than phone but you could phone too. You need a record of the failings so that worry that you might make an official complaint speeds up their reaction.

[Swhippet]

Swhippet here, following up my original post. A heartfelt thank you to everyone who replied. It was really helpful to read through the responses and learn about other people's experiences, both good and not so good. I've been finding it difficult to know whether my reaction to teriparatide constitutes "normal" side effects or something more so while I certainly wouldn't want to wish the nausea and dizziness on anyone it is to be honest reassuring to know that I am not alone in this. I suppose we all have to weigh up whether putting up with the unpleasantness of the side effects now is worth it for the potential benefits. In my case I'm not sure I know the answer to that question but for now I'm carrying on. Wishing for the best for all of us!