My Fridge ... : Hello! hope everyone is having a good... - NRAS

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My Fridge ...

ccw93 profile image
24 Replies

Hello!

hope everyone is having a good week :)

I have had a bit of a crazy few days .. On Sunday i went for a short dog walk on dartmoor. After 15 minutes I was in a lot of pain and by the time I got back to the car I was in agony and could barely move. My boyfriend ended up driving us all home. My mum was due to visit and stay for a few days and by the time she arrived on Sunday evening I was feeling very sorry for myself! My feet, ankles, knees, hips and hands were all flaring up and I could barely move. 

Monday morning we went  to the GP who listened but couldn't help as i was technically under the care of the hospital. The Rhem nurses hadn't called me back and the hospital told me i had to wait 6 weeks for an appointment! After calling the whole of the NHS, I managed to speak to a consultant who fitted me in yesterday afternoon. 

I was reluctant to go to hospital as nothing had really helped me so far, but luckily my mum came with me and convinced me to actually go in! After 3 hrs of meeting with nurses and consultants I had been refereed to physio, occupational therapist, had my bloods taken, given a steroid injection and agreed to proceed with the biologic Etanercept. I got home and slept for a solid 10hrs!

I'm back at work today, in a lot less pain and feeling quite positive.

I'm probably focusing on the wrong thing .. But I don't want biologics to be stored in my fridge. My fridge is a happy place and I don't want to be reminded of awful Rheumatoid arthritis every time i open it !! Any suggestions? 

Sorry for the essay, Its nice and sunny here and I hope everyone else is having a positive day xx

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ccw93
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24 Replies
sylvi profile image
sylvi

Why don't you invest in one of those little fridges that hold about six cans of pop,they come in electric and cost no more than a £100 probally less darling.xxxx

ccw93 profile image
ccw93 in reply tosylvi

I have considered that, I live in quite a small flat though and don't want my electricity bill to go up? 

sylvi profile image
sylvi in reply toccw93

It won't cost much more than your paying now darling.xxxx

kalel profile image
kalel in reply toccw93

i live in a apartment and currently own two fridges pretty sure my electricity bills are not any more expensive in comparison to what they used to be.

farm123 profile image
farm123

The Etanercept will be your happy thing.   If this is the drug for you it will be your lifesaver and you will view it completely differently.  Unfortunately it can take some time and changes of drugs to find the right one for you but give it a chance (up to 12 weeks) and keep in contact with your rheumy team.  Good luck.  Farm

ccw93 profile image
ccw93 in reply tofarm123

Thankyou :)

sandybrown profile image
sandybrown

Please  Google, fro mini fridge in Argos, cost 29.99 you need an adaptor 7.99, cost of running very small may be few pence a day.

smithfield profile image
smithfield

I agree with Farm if it relieves your pain and gives you freedom of movement look at it as a positive addition to  your fridge.

My RA is uncontrolled at the moment while waiting for funding for CIMIZIA . I would at this moment give almost anything to see it sitting in my fridge.

ccw93 profile image
ccw93 in reply tosmithfield

I hope everything improves soon xx

Birthdaygirl profile image
Birthdaygirl

Hiya

When I see two discreet boxes of Enbrel in my fridge I smile and feel very positive.

The alternative of no Enbrel/Biologics in the fridge would mean I would go back to being unable to sit, stand, sleep, move my arms, my legs, toilet myself, wash myself or wear a bra or be able to dress myself without help. I would be suffering uncontrollable pain again, crying a lot, unable to get into a car and have no life. I wouldn't be able to prepare food let alone hold a fork to eat it.

Enbrel and food in the fridge go well together for me and hopefully they will for you too when you feel a bit better. Hope the steroid has kicked in a bit now and you start to feel more positive.

BG 

Ps I think the mini fridges for cold drinks may not get to a lower enough temperature for storage of Biologics. When I looked into getting one they were not cold enough but I could be wrong now as they are coming out with new things all the time. You never know.

smithfield profile image
smithfield in reply toBirthdaygirl

That sums up beautifully how I am right now.x

Birthdaygirl profile image
Birthdaygirl in reply tosmithfield

Hope the funding comes through soon.

ccw93 profile image
ccw93 in reply toBirthdaygirl

thank you. So true. that's a very good point, hadn't thought about the correct temperatures! 

Birthdaygirl profile image
Birthdaygirl in reply toccw93

I was told that the storage temperature is really important. Enbrel has to be stored at 2 to 8 degrees and the boxes must not touch the sides of the fridge. I have given them their own little shelf in the middle of my fridge with two thermometers. The Biologics nurse will give you all the blurb when it comes to it. It is good news that you are being offered another treatment to control this horrible disease. Take care 

BG

helixhelix profile image
helixhelix

Maybe get yourself something to put them inside in the fridge. How about a superwoman lunch box?    Or Popeye?  Anything that will help make you feel more positive about them.

I bought myself new pill boxes a while back (see my post 3 months ago -shopping extravagance) and it has made a massive difference to the way I feel about having to take 12 -15 pills a day.  Can't say it's exactly a pleasure now, but certainly less of a chore. 

ccw93 profile image
ccw93 in reply tohelixhelix

wow your pillbox is so pretty! I shall look into some pretty box and hopefully that may help x

Birthdaygirl profile image
Birthdaygirl in reply toccw93

Just a thought ccw .......make sure anything you choose is not insulated or too thick plastic as this will act as insulation from the cold of the fridge. The pens cost about two hundred pounds each and every delivery is boxed and packed to keep them at the right temperature in the fridge. I normally get two boxes of 4 pens at a time. 

You will be given a direct contact for the pharmacy of the healthcare delivery company so you can always speak to them for advice on storage at home or when travelling. They have been very helpful to me.

Take care

BG

ccw93 profile image
ccw93 in reply toBirthdaygirl

Thank you, there's so many things to consider! 

Birthdaygirl profile image
Birthdaygirl in reply toccw93

One step at a time ... First approval for the Biologics and then you will be well supported all the way along the path ...... And there is always everyone on here to talk to as well.

Have a good day and as pain free as possible.

popsmith1874 profile image
popsmith1874

I'm the same as you Smithfield waiting for funding for Biologics and am struggling with fatigue at moment, I went with my daughter for her 22 week scan yesterday and today I'm really struggling so it's a couch day today

smithfield profile image
smithfield in reply topopsmith1874

And me Popsmith we had family over Sunday and while I did not do much it takes its toll.Thank goodness I love reading.

Hope you feel better soon.

smithfield profile image
smithfield in reply topopsmith1874

Oh and congratulations a grandchild on the way.x

Birthdaygirl profile image
Birthdaygirl in reply topopsmith1874

Hope the funding comes through soon for you too...

Scottishlad profile image
Scottishlad

Hi if the Biologic works for you, you will be happy to see it in your fridge. I know I am happy to see my Cimzia boxes in mine. Not sure about using mini fridge as temperature control may not be good enough. Try finding  plastic box large enough to hide your supply in the fridge if it is a problem.

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