Transporting teriparatide : Not that I’ll be... - Bone Health

Bone Health

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Transporting teriparatide

Nuthatch profile image

Not that I’ll be travelling anywhere for a while! But wondering what people using teriparatide (I have Terrosa) use if they are going away. We used to drive to France quite regularly and are really hoping to do so again sometime in the next 2 years (I’m only a week into my second month so nearly 23 months to go). We usually drive from the north east where we live to a hotel near the tunnel for the first night, then stay a night in a hotel in France en route. We always go self catering other than the 2 hotel nights on the way there and back so no problem about refrigerating once we’re there.

Any recommendations? There seem to be lots of products out there so it’s hard to know what’s best. It has to be stored between 2 and 8 degrees C.

27 Replies

We’ve always holidayed in France in a camper van or last year in a tent - a moment of madness on my part - but it was great apart from packing and unpacking the car.

Anyway, for that I bought amongst other creature comforts, a Camping gaz plug in electric cool-box/fridge. Similar or possibly even this campingaz.com/uk/c-503-elec... It was excellent and coped with some phenomenally hot weather in Provence.

Normally though in the camper although we had a fridge / freezer I just kept all my tablets in an old make up bag in a dark cupboard that was deep enough in the body of the camper not to get warm - under my clothes was always a good place.

Same when we were using the car and hotels on other occasions. I imagine though with injections you would need to be a bit more careful so an electric cool box might be just what you need - sorry I can’t see any temperatures mentioned but things did stay cold. You can plug it into the car charger socket and we have an adapter for using with a camping power block.

Hopefully we will all be able to get back to France next year. Where we are we’ve had weather similar to what we would expect over there but without all the things we love most about being there. ☀️

Thank you - we had one of those plug in cool boxes years ago! Very good for France. It’s a good idea, I’ll have a look online. If we can make room for it in the car once husband has packed at least 2 bikes - apparently they’re too precious to go on a cycle carrier 😂 and we have the dog now as well though heaven knows how difficult it’s going to be to take her abroad now.

You’ve had much hotter weather than us then! We are in the north east though so can’t expect heat..

At least two bikes!! Sounds like your other half is a very keen cyclist! I think we have had the box in the floor behind the front seat - possibly there are different sizes of them or he could take the bikes up to the hotel room overnight.

We’re in the south east outside Cambridge. Our grass has been like dried out straw for at least the past two weeks. We had some rain last week but the sunshine and heat is back again. I like to get up early in the morning when it is quiet - the light and air is such that it feels just like being in France.

Sounds idyllic! Sea fretting here or just grey and wet 😢

Hah - 2 bikes is nothing! He has at least 7 and most live in the house because he thinks they’ll be stolen out of the shed. We have a people carrier - for 2 of us plus bikes..

7 bikes that live in the house. That is serious cycling. Years ago we used to go to France and if we were remotely near where Le Tour de France was passing we always tried and get to somewhere we could see it.

It passed about ten minutes along the road from us when it started in Cambridge a few years ago. We drove in the general direction of the route then cycled out until we got to what we thought was a good spot for taking photographs.

It was funny because the guy next to us was a really keen cyclist and wasn’t local - he had done a recce when he was in our area visiting his family and chosen the same spot. I gave him the things I collected as the caravan went past and he was thrilled. I heard him telling his wife about it on the phone

We’ve been to Mt Ventoux and lots of the places Le Tour goes but not when it was on. I bet you and your other half have too but he’s maybe even cycled. I love watching it when it goes t places we’ve been to.

I’m afraid my idea of cycling is on the Ile de Re because it is totally flat and you cycle almost completely on good cycle tracks. I’m not good on hills.

Hopefully you get to France at some point. What is your favourite area?

Yes indeed we usually try to go for the Tour at least for a few days. Husband has done Ventoux and the Tourmalet on his folding bike.. also the Aubisque a couple of times on his road bike. And a few others. We love the Pyrenees especially but last time we went was 2018 when we did a week near Bordeaux (fabulous), then caught the first 3 stages of the Tour in the Vendée finishing up with a few days in La Rochelle. So we visited Île de Re - lovely and went to a salt place which was so interesting - and very hot! It’s not his sort of cycling and I don’t think I could cycle at all now, not that it’s a big miss! Used to love horse riding but that’s not going to be possible now either. Still, at least I can still walk!

Wow, I’m impressed. Ventoux and the Tourmalet - 🚵‍♂️ - is his folding bike a small one like a Brompton or is it a special lightweight full size but folding bike?

You have to get out early on Ile de Re to avoid the crowds especially at the weekends but we’re early risers so the tracks were nearly always very quiet, you see some wonderful wildlife when you are cycling out along the salt pans.

We haven’t cycled for a couple of years either. Husband had a new hip then we just didn’t get back to cycling.

Horse riding might be a bit risky with osteoporosis unless you knew your horse was totally bomb proof. I remember years ago my mum and I left my husband in charge of two boys on an adventure playground and came back to find number 2 son in the first aid room with a broken arm.

We took him to a hospital to get it set and next day we went to a nice little seaside town. Same boy complete with arm in plaster decided he wanted a pony ride - I’ve got a lovely photo of him sitting on a neat little grey pony - two seconds after it was taken the horse owner whacked the pony on the rump and it practically took off vertically and headed off at a fast rate of knots - my heart was in my mouth in case I had to take him back with another broken arm. 🏇

When I was taking it, if it's the daily injections, Lloyds Pharmacy who delivered it supplied you with a special cool bag together with ice packs for travelling, then told to transfer it to a proper fridge on arrival as needs to be at a certain temperature. Mine came with a book & pack telling me all about it.

Happy travelling.

Nuthatch profile image
Nuthatch in reply to Messyme17

Thank you - did you have Forsteo? I’ve read that they supplied a travel bag with that. I have Terrosa which is one of the new bio similars. It’s made by a different company which doesn’t seem to offer travel packs. It does come from Lloyd’s but I got the first 3 months’ supply from the hospital due to all sorts of mix ups because of Covid. My first Lloyd’s delivery is next month so I’ll give them a ring and ask if they can bring a travel pack then.

Messyme17 profile image
Messyme17 in reply to Nuthatch

Yes I was on Forsteo. I forget the company that made it now as it was a couple of years back! Whether the travel bag came from them or Lloyds I'm not sure but certainly worth giving Lloyds a ring.

I've just pulled a muscle (hope that's all) doing something I know I shouldn't be doing, independence! Good luck.

Nuthatch profile image
Nuthatch in reply to Messyme17

Thank you. Hope you recover soon - awful not knowing what might cause damage. I’m gradually doing more but sometimes get very stiff and sore, like you hoping it’s muscles not bones!

Messyme17 profile image
Messyme17 in reply to Nuthatch

Thank you. Touching wood here! but have been very lucky lately re non fracture 👍🏻. Like you stiff and sore quite often but can live with that now. Stay well.

Hello Nuthatch

I'm about to finish the two years of Forsteo, delivered from the mainland via Lloyd’s clinical team, like Messyme17. I found I had to ask for things, like a travel sharps bin and the travel bag and special medical freezer blocks (which last longer than ordinary ones from the camping shops). With the Forsteo it was to be kept between 2-8 degrees centigrade, when we checked our old fridge and found it was nearer 9-10 so bought a new fridge! The Forsteo could stay out of the fridge in the travel bag for no more than 32 hour for any one pen, but I managed as hotels (Travel lodge stlye); B&B etc. all understood and seem used to people needing such services. It took a little extra care and planning but once you've done it once or twice it didn't seem too much of a worry.

Happy travelling, message again if you have problems getting a bag and the freezer pouches.

Posy White

Nuthatch profile image
Nuthatch in reply to Posy-White

Thank you - that’s really useful. The Lloyd’s people seem pretty on the ball so hopefully I’ll be able to get what I need - when I need it! I’m intrigued by your reference to the mainland - guess you must be an islander 😊

Posy-White profile image
Posy-White in reply to Nuthatch

Hello Nuthatch,

Husband is the islander, I'm an incomer! Had a mainland hospital appointment today, I chose to do the injection in the morning so able to get everything sorted before leaving; because of current situation no wait at the hospital so in and out in no time (Hurray) only to find two hour wait for a ferry back home! If I'd had the medication with me it would have been the sort of situation that would worry me when I started, but as I said once you've do two or three trips it did become easier and no more a worry than any of the other meds.

Good Luck

Posy White

Sorry to jump on post .

Can you any of you tell me how you are doing with the Teriparatide injections . I’m due to begin them shortly and feeling very anxious about them .

Any problems with injecting - side effects etc ?

Thanks x

Hi Amanda,

I had a 2 year course of Forsteo which was completed in 2014.

At the time I had only one fracture without trauma I now have 5 possibly 6.

All without trauma.

Everyone has different outcomes with the treatments mine have like many others not been positive.

The main side effect is Bone pain and Nausea.

Unfortunately I had both and it also had a negative effect on my immune system.

The Bone pain for me was mainly in my back and legs, especially my shins.

The Nausea gave me the most problem.

It was like morning sickness but was worse in the evening I would just want to crawl into bed.

Injection wise not pleasant but not a problem until the last 6 months when I felt so sick I could not face injecting myself so husband had to do it for me.

Some people get no side effects yet others do and the nurses actually told me most people give up on it because of the Nausea.

I stuck it out and was so releived to get rid of the side effects which went away on stopping the treatment.

We have to give these things a try to see if we can tolerate them with little or no side effects.

Good Luck and try not to worry because you will more than likely be one of the lucky ones.

Lolalee profile image
Lolalee in reply to AmandaTF

Hi Amanda. Don’t give up. I’m on my sixth month forsteo injection. I can’t say there are no side effects but as time passes they get better. The first month was the worst with nausea . Now bone pain is the worst but it’s controllable . Hope you will be ok

AmandaTF profile image
AmandaTF in reply to Lolalee

Hi thank you 😊 I have read that side effects can wear off as your body adjusts . I need to “chill out” I do love a good worry 🙄 x

Posy-White profile image
Posy-White in reply to AmandaTF

Good Luck AmandaTF

Just about to finish my two years. Had problems for first two weeks, nausea for 6 hours starting 15-30minutes after the injection. It could have been neaves but also may have been too much calcium with tablets aswell. Advised to cut back on the calcium tablets and most days had been okay, about once a month get the nausea.....but wouldn't like to say that was because of the injection!

The other minor thing ( I also had with first month after a Prolia injection) slight constipation, this was hell with spinal fractures needing to heal, but once sorted no real problem.... except the amounts I need to drink!

I'm now longing for next scan (has to be after hospital 'back to normal') but have had no fractures or anything like that.

Best Wishes

Posy White

AmandaTF profile image
AmandaTF in reply to Posy-White

I think I need to relax a bit or I’m going to convince myself I’ve got side effects and almost wish them on myself .

I’m going through re bound affect after being taken off prolia (with no relay drug given ) 5 spinal fractures. Scared of all medication now . Thanks for your comments x

Nuthatch profile image
Nuthatch in reply to AmandaTF

So sorry to hear that. The Prolia situation is a scandal. I also have 5 spinal fractures but spontaneous nothing to do with drugs. Very disappointed with gp who wouldn’t send me for a scan or x ray till it was too late and has been completely uninterested since. Keeping my fingers crossed for you that you get on ok with the teriparatide - I’ve really not noticed any side effects.

Posy-White profile image
Posy-White in reply to AmandaTF

Hello again Amanda TF - I remembered you where in the same situation as I was two years ago. I was so sad when I read what had happened to you and the pain you have been in.

I do understand, I was so upset at the idea of having these daily injections 'because none of the so called professional could read the warning label of the Prolia packet' etc. etc. (Over the top may be, but that's how I felt, upset in pain and not coping)...... BUT if you are 'following in my footsteps' I've had no further fractures since the 8 spinal re bound fractures. I do feel that they where Prolia re bound and not 'it might happen again'

I couldn't manage to inject into my stomach area because of spinal brace etc. but injected into my thigh. I was also so weedy at the time when I started I did it every morning then I didn't need to worry about doing it during the day!

I sure you'll be better than I was!

Take care

Posy White

Lolalee profile image
Lolalee in reply to AmandaTF

On another note. Injecting is super easy and no problem at all .

88km profile image
88km in reply to AmandaTF

Hi there , I’m new to here . Starting on Terrosa injections next week & im also nervous - mainly because of the side effects . How are you finding it ? - if you are still taking it Thanks 😊

Hi, I can not see you having any problems at all with travelling to France.

I had 2 years on Forsteo at the time I only had 1 fracture and was still able to travel long haul.

On more than 1 occasion we travelled 30 hrs from leaving home to reaching our destination.

I did use a cool bag and ice packs which I got from Lilly and Co who were the provider of my treatment.

As you can imagine travelling for so many hours raised my concerns and I had many calls and emails with Lilly and co.

I was told that I did not need to use the bag they provided and that a good quality cool bag with ice packs would do the job just as well.

With travelling so far I did not want to take any chances.

When I received the cool bag I was surprised to find that the only difference to other cool bags was that it was smaller.

Here is what the American website says about it.

Hope you get on your travels sooner than later .

The only problems I had were getting through customs with it at far away locations.

No problems with Europe at all.

Happy Holidays!!!

Traveling with FORTEO® (teriparatide [rDNA origin] injection)

The US marketed travel bag is designed to protect the FORTEO delivery device when traveling up to 36 cumulative hours total travel time per device.

The teriparatide travel bag is intended only for occasional use when traveling. Do not store the travel bag itself in the freezer or refrigerator. It is best to pack your travel bag right before you leave. Do not store the travel bag in a car trunk (Forteo Package Insert, 2012)

The total travel time allowed per device is 36 hours as long as

the provided travel bag is used for traveling with the teriparatide delivery device and

the temperature that the teriparatide is exposed to during travel does not exceed 77°F or 25°C (room temperature) (Data on file).

Return the teriparatide delivery device to refrigeration as soon as possible when arriving at your travel destination. Except for traveling, store your teriparatide in the refrigerator at all times between 36°F and 46°F (2°C and 8°C). Do not expose it to freezing temperatures (Forteo Package Insert, 2012).

Travel by Air

A little advanced planning is needed when you travel by air with teriparatide. Before you travel, make sure you have a copy of your teriparatide prescription label. You may be asked to verify that the teriparatide Delivery Device and needles belong to you (Transportation Security Administration [WWW]).

Bring your teriparatide travel bag with you onto the airplane as a carry-on. The temperature in the checked luggage area is not always controlled and may become too hot or cold (Transportation Security Administration [WWW]).

A recent study demonstrated that x-ray radiation from screening equipment used in airport scanners did not impact the physical or chemical properties of teriparatide (Data on file).

Thank you - sounds as though it’s going to be nice and straightforward. Just hope we’ll be able to travel with the dog too - or we won’t be going!

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