how to "handle" the RTX ampoule ?

[Alysia]

Hi.
I hope it is not going to be too silly question… :blushing:
On 16 April I am going for my 3 rd round of rtx. This time all the approvals arrived fast, and with no problems :thumbup:
The procedure here is like that: I buy the med from the pharmacy of my health service and I have to bring it with me to the hospital at the day of the IV.
It means that the med "sleeps" at night in my refrigerator. On previous times, it was for one night. Now it is going to be 3 nights because we have holiday before.
The problem is that: on the med it is written that it should be on temp of between 4-8.
Previous times I put thermometer near the med and checked it all the time, even at night. Sometimes the temp was not like it should be and I had to change the refrigerator level of cold. It was tiring and worrying. I was afraid to spoil that expensive life saving med.
Does anyone here maintain the rtx in the refrigerator ? how do you ensure that the med is in the right temp ?
even from the pharmacy to home and from home to the hospital I was told to take it in special bag, preserving its cold with cold pack inside it.
Or maybe it is not as delicate as I am afraid ?
thanks.

[mishb]

Alysia, I have no idea on the RTX question - but please DON'T think that any question is too silly :wink1:

This is what everyone is here for and if the silly and not so silly questions can be asked, then everyone can learn. :thumbsup:

[annekat]

True, not a silly question.... I think that is too much responsibility to put on you for such an expensive drug! I don't know why the hospital can't keep it in THEIR refrigerator until they are ready to give it to you. In my neighborhood, we have power outages a few times a year, which would be a disaster if I had RTX in my refrigerator!

[pberggren1]

I've had RTX in my fridge for over a year even with power outages. I never checked the temp of my fridge and I'm sure it was fine.

[annekat]

I've had RTX in my fridge for over a year even with power outages. I never checked the temp of my fridge and I'm sure it was fine. Well, I'm not an RTX user so can't speak to that experience, but I can understand Alysia's concern if the instructions she was given were that specific.

[Alysia]

I've had RTX in my fridge for over a year even with power outages. I never checked the temp of my fridge and I'm sure it was fine.
maybe it is a matter of the weather, after all, yours winter is more cold then my frizer :wink1:

[Alysia]

True, not a silly question.... I think that is too much responsibility to put on you for such an expensive drug! I don't know why the hospital can't keep it in THEIR refrigerator until they are ready to give it to you. In my neighborhood, we have power outages a few times a year, which would be a disaster if I had RTX in my refrigerator!
last time I asked the hospital to keep it at there fridge but they refused. I will try again. thanks.

[annekat]

last time I asked the hospital to keep it at there fridge but they refused. I will try again. thanks.Well, if Phil has to keep it in his fridge, then maybe that is a common procedure. I hadn't heard of it and have no idea whether I'd be asked to keep it in my fridge. It sounds a little unprofessional for that expensive a drug. Does anyone else have to keep it in their fridge?

I guess another idea would be to keep in in the cold pack in your fridge.

[drz]

I would ask your pharmacist for help. How sensitive is the meds to temperature fluctuations? What do they suggest for safe keeping? It has to get to hospital and pharmacy some how and how do they transport it?

[pberggren1]

Ya, I bet the pharmacy would keep it for you.

[Alysia]

thanks my friends :wub:
I made some phone calls. I asked 2 pharmacists about the rtx. each one said another thing :sad: one said that it is ok to keep it at my fridge. the other said that it is better to keep it in their fridge in which the temp is controlled :confused1: I checked at Roch, who are selling the med and they say that it is better to keep it in special fridge.
so I consulted my health service and we found another pharmacy, 5 min drive from the hospital (my pharmacy is an hour drive from the hospital) and they will get it for me. they are openning at 07:30 and will give it to me without waiting at the day of the rtx.
so I hope it will be ok.
maybe keeping it in my fridge could also be ok, but I am not as cool as Batman to keep it there without stressing... :wink1:

[pberggren1]

If you have to drive an hour to the hospital or so, put the RTX in a cooler so it stays cool still. Also, when it is mixed, the bag should have a covering over it as the RTX is sensitive to light.

[Alysia]

If you have to drive an hour to the hospital or so, put the RTX in a cooler so it stays cool still. Also, when it is mixed, the bag should have a covering over it as the RTX is sensitive to light.
wow. thanks. I think that they don't cover it :w00t: I will tell them to.
I will get RTX from another Pharmacy, 5 min drive from the hospital.

[Alysia]

I did my 3rd of RTX today.
I took the med from a pharmacy which is close to the hospital in the morning.
no events. it went easier then before. prob also because I was not frightened anymore. BP remained ok, not less then 80/50. I had a bit of fever 37.2c, I don't know why :confused1:
still, I was the only weggie around. but there was one more woman getting rtx for Scleroderma. she told me that the RTX caused her this year 3 lung infections :sad: she said that she was told so by the docs. really ? :confused1: :scared:
now I looks yellow and "puffy" :blink: and feeling exhausted...

[drz]

Wishing you good results and quick improvement from your RTX treatment.

[annekat]

Thinking of you, Alysia, hoping you get over the side effects quickly and that it makes an even bigger difference this time.

[windchime]

Hope you are feeling better soon Alysia. Hang in there. Hugs to you. :hug1:

[pberggren1]

Ewww, I don't like the sounds of that causing a lung infection. Maybe my bronchiectasis is caused by the RTX......:mellow:

[jvilner]

Feel better soon Alysia! Totally understand you when you say confused and scared. So much unknown with wg! But your not alone with all us weggies here for you! 😉


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[annekat]

Ewww, I don't like the sounds of that causing a lung infection. Maybe my bronchiectasis is caused by the RTX......:mellow: Maybe it didn't cause it directly, but it came about because of immunosuppression? Maybe the person wasn't taking Bactrim? Not that I know a thing about RTX.

[Alysia]

thanks my dear friends :love: I am feeling better this morning, still feeling weak and "shaky" but I an not as pale as I was yesterday.

[Alysia]

Ewww, I don't like the sounds of that causing a lung infection. Maybe my bronchiectasis is caused by the RTX......:mellow:

I don't like it either :crying:
It is something that need to do some research about: the connection between RTX and lung infections.... I will do and update....
anyway I think that your bronchiectasis was caused by many things: wg, Mycobacterium Abescuses (I hope my spelling is correct), lung infections :crying: hugs and prayers to you sweeties :hug1:take care.

[windchime]

thanks my dear friends :love: I am feeling better this morning, still feeling weak and "shaky" but I an not as pale as I was yesterday.

Glad you are feeling better today. :thumbsup:

[mishb]

How are you feeling today Alysia?
I hope it hasn't knocked you around too much.

Get as much rest as possible and hopefully things are on the improve

[Alysia]

Thanks for your caring Michelle :) I am feeling better today.
although I look "red". maybe a bit of reaction.

[mishb]

Thanks for your caring Michelle :) I am feeling better today.
although I look "red". maybe a bit of reaction.

Red is probably okay - now Green, that would be bad :tongue1:

I guess that is the problem with RTX and the not knowing long term what the side effects are going to be, or what the side effects will be if it is used too often :unsure:

I hope you turn a normal colour soon and that you don't start getting polka dots :flapper:

Take care lovely Alysia

[Alysia]

:lol: Thanks Mish :biggrin1: how can green be bad ? :unsure: anyway today I am "pink" :wink1:
some wrote to me on fb that the redness is a reaction.