Teriparatide Sondelbay Shortage

[Rooruby]

Hi I'm on daily injection of teriparatide and yesterday I had a call to change my delivery date as they are having issues with supply. My delivery is now the day I need the pen and a little worried in case I don't receive it. Anyone else had this issue

[Motown_1960]

Hi Rooruby. That’s a bit worrying. They are normally very good at delivering our medication . The last time I received a delivery they gave me 3 pens . I hope you get your pens delivered in time for your next injection . x

[Rooruby in reply to Motown_1960]

I have 1 every 25 days and pen lasts 28 but yes it is worrying as my next delivery has been put to the day I have run out. I guess it depends on brand and where you live I'm in West Sussex so not sure.

[Motown_1960 in reply to Rooruby]

I’ve been on Teriparatide for nearly 7 months now . Started receiving one pen then 2 then 3 at a time . I live in the central region . Maybe just to save delivery costs

[Rooruby in reply to Motown_1960]

Yes could well be I will have to wait and pray I get it on time xx

[Motown_1960]

🤞

[HedgehogQueen13]

Heya,only been on this since February and have only ever received one pen at a time...usually 2 weeks into the 28 days. This time I had a letter telling me of supply issues, I was apparently supposed to have 3 but they could only give me one as they want to ensure everyone who needs this medication can remain on it.

I live in Cambridge...I'm also aware that talking to a friend who was on the previous manufacturer of this drug ...that was discontinued, hence the move to Sondelbay...fingers crossed this isn't going to go the same way !!

[Rooruby in reply to HedgehogQueen13]

Thanks for your reply it is worrying hope we get it on time. Mine is due on 17th the day I have to take it then it's Easter so I pray I get it x

[HedgehogQueen13 in reply to Rooruby]

They normally ask how many doses you have left when they send you a re order message...hopefully you will get it ...fingers crossed x

[questionably]

Hi Rooruby, I don't know about the Sondelbay pens, but the Forteo pens usually have enough medicine for two extra days. Most on the drug that I've spoken with always use the last two doses. That said, your osteoblasts have already been enhanced and they live for about three weeks. Missing a day or even several won't disadvantage your bones.

I once lost pens while traveling. It too several weeks to get them replaced. Since I'd had bone markers before losing them, I decided to have bone markers before starting Forteo again. Suprisingly, the bone building cells increased activity while the acid producing cells slowed down.

Still, I hope the pens arrive in time and that the shortage is resolved.

[Rooruby in reply to questionably]

Oh that's interesting I was told to disregard pen after 28 doses apparently that's the shelf life. X

[questionably in reply to Rooruby]

Rooruby, we are told the same and the package insert agrees. The endocrinologist I see (and others) reason that the medication doesn't expire overnight. I never even count the days; I just use it until it won't draw the next dose.

[Rooruby in reply to questionably]

OK thanks for info I will do that if needed

[Machoupa]

Hello,I am on 6 mthly injection of Prolia and am wondering what happens if you are late with one of yr injections of Teriparitide?

Best wishes

Sheelagh

[Rooruby in reply to Machoupa]

That's my worry I thought a day or 2 ok but don't want to go much longer than that tbh

[Machoupa in reply to Rooruby]

Reply above to "me", was for you Rooruby, let's see who gets this one 😊

[Machoupa in reply to Machoupa]

Try not to worry, what Questionably had to say sounded reassuring.Have you spoken to yr Dr?

[Rooruby in reply to Machoupa]

No cannot get them but left a message tha ks

[questionably in reply to Machoupa]

Machoupa, Prolia is the singular osteoporosis medication that will leave you worse off without an immediate replacement medication than if you'd never taken it at all. If you were a year late with teriparatide (after a year's use) you'd lose much of the bone mineral density gained. You'd still retain some fracture protection.

Teriparatide and abaloparatide are the two medication that actually restructure bone. In areas where there are disconnected spicules they will build a collagen structure where they lay down mineral afterward. If you were to skip teriparatide for a year after a couple of months of use, that collagen restructuring would be lost rather quickly.

In the tower studies (Japan) teriparatide given every other day at the same 20mcg dose with effective results.

[Machoupa in reply to questionably]

Thanks questionably. If i'd known what you've told me about Prolia, i'm not sure i would have started it.The fact that i broke my hip after slipping on grass, prompted me to start. I had given the once a wk med 5 yrs to no effect.

Every time i had a dexa scan i'd lost bone density, got to the point of not even checkin' the results.

Had one about a wk ago after break of about 3 yrs, so i'm curious to see if there is any improvement.

Best wishes

Machoupa

[Riverreader]

Hi Rooruby, I'm also having problems with supply. I was supposed to start Teriparatide - Movymia - for the first time in mid-February (four spinal compression fractures found on x-ray last November) but received a phone call from Lloyds saying they couldn't get hold of the pens at the moment so couldn't supply it - they had no expected delivery date either.

I've spoken to the clinic where it was prescribed, but they can't help me at the moment. I'm spending a lot of time worrying about getting more fractures - was hoping that the Teriparatide would help. Apparently they are working on sorting out a contract with another drug company for continuing supplies, but the weeks are ticking by.

The lack of availability is worrying - it sounds like this could be a problem with both the drug itself and supply of the pens. Or perhaps I've just been unlucky due to the supply chain in my area?

I wonder how many other people are having this problem - especially people waiting to start on Teriparatide for the first time. Has anyone heard any information about when or if the situation with supply might be resolved?

I hope your issues are resolved where you are Rooruby so there's no interruption to your treatment.

[Rooruby in reply to Riverreader]

Hi I'm in West Sussex area. I just hope treatment is not interrupted. Fingers crossed they will sort this soon and you will get your treatment start. What area are you

[Riverreader in reply to Rooruby]

Thanks Rooruby, I'm in Gloucestershire. Sounds like this might be more of a local problem with supply for me...

[Rooruby in reply to Riverreader]

Maybe local we will just have to hope we get our pens ASAP good luck xx

[Riverreader in reply to Rooruby]

Good luck to you as well 🙂

[Blondeisbest in reply to Riverreader]

Hi ,while I was waiting on blood results before I started teraparatide I was told of a shortage but that my supplies would be coming from Italy, I started my first injection on Tues so hopefully all will be OK 👍.....by the way I'm in Essex x

[Rooruby in reply to Blondeisbest]

Are you on sondlebay teriparatide or another brand. Good luck to you I'm sure you will be fine and fingers crossed hope we get good results in 2 years x

[Riverreader in reply to Blondeisbest]

Glad you managed to get on to teriparatide Blondiebest - did you have to wait a long time for it to come through?

[Blondeisbest in reply to Riverreader]

Hi,I've taken since last March to get here ,was recommended by rheumatology then had to wait to speak to OS nurse to get prescription, I was then found to have high protein in my blood , so had to keep testing till it was OK, but I've been out of action for 8 weeks due to a severe flare up in my lower spine so it's been put off till now......hopefully will now be plain sailing x

[Riverreader in reply to Blondeisbest]

Sorry to hear about the flare up Blondiesbest but like you say fingers crossed for the treatment now and hope it works well for you.

[Blondeisbest in reply to Riverreader]

Thank-you so much....hope you progress well too x

[Blondeisbest]

I'm on movymia , it's taken a while to get to this point, but hopefully will be OK, I'm actually really needle phobic but Lloyd's nurses were lovely,and I'm patting myself on the back at moment just have to navigate travel next 🫣 good luck with your progress x

[Rooruby in reply to Blondeisbest]

Good luck and you can buy travel bags to keep pen cool

[Blondeisbest]

Lloyd's actually supplied me with one so I'm good to go x

[Rooruby in reply to Blondeisbest]

Oh that's great x