Biosimilars soon🤞🏼: Hi All, Had all my blood tests... - NRAS

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Biosimilars soon🤞🏼

Juliachoo profile image
18 Replies

Hi All,

Had all my blood tests & chest X-ray on Wednesday plus the one to one with my Rheumatoid nurse in preparation for finally going on Biosimilars.. my dilemma now is which one? I had been offered 3 but one was an infusion so am now down to a choice of 2, adalimimab(similar to Humira) and Etanercept(similar to Embrel)... also, needle or pen? Even though I’m on MTX subcutaneous I still “wind up” about self injecting & see it as a weekly hurdle.. also a bit confused about keeping the correct temperatures when travelling abroad & if I choose the pen can I get a cool case that a pen will fit in & also keep the liquid at correct temperature? All these things are running around in my head so would appreciate some feedback from all you lovely warriors on biosimilars, thank you in advance 🙄🙄

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Juliachoo
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18 Replies
helixhelix profile image
helixhelix

I don’t know about Humira/Adalumumbab as I am on Enbrel. I have the pen, which is easy and not stingy if you get it to room temperature first. It can be out of the fridge for 4 weeks so, although I have a very good medical cool bag that keeps it at 4degrees for 36 hours, most times I just pop them in my hand luggage the same as my methotrexate pens. I can’t remember the last time I had a 5 week holiday/business trip!

Mmrr profile image
Mmrr

I use benepali, similiar to Enbrel. Like helixhelix says it keeps for 4 weeks out of the fridge and the pen is quite easy (I found it a wee bit clunky to begin with, but no problems after a few weeks of using it, it just fires a wee bit differently from MTX).

I took 2 on holiday in their box a few weeks ago and a Tupperware container to put the used ones in until I got home. No problems.

Juliachoo profile image
Juliachoo in reply toMmrr

Aww thank you, I remember you saying how well you got on with Benapali x

Paula-C profile image
Paula-C

Yes it's alright to take them out if the fridge for going on holidays but it depends on where your going. If it's going to be over 25 degrees when you get there your going to have a problem. Once the drugs been over 8 degrees it can't go back in a fridge when you get to your hotel/apartment, you've then got to try to keep it between 8-25 degrees.

My daughter lived in Gibraltar and Spain and in the summer her apartment got way over 25 degrees. Somedays on returning from being out it was like walking into an oven, especially when she lived in Gib, she had the sun blazing in all day. If your in a hotel you can't go out and leave the aircon on. xx

Juliachoo profile image
Juliachoo

Thank you Paula.. I remember Sally the nurse practitioner saying she used those freo self cooling pouches so I might get one of them xxx

AgedCrone profile image
AgedCrone

Why the dismissal of infusions?

If you were offered Rituximab/Truxima it’s two infusions twice a year.Most people do well on it...everybody I meet at the clinic where mine is administered have nothing but good to say about it.

I find it much more relaxing than having to remember to take pills...& when I travel there is nothing to consider.....I just plan my trips around my 4 infusions a year.

Juliachoo profile image
Juliachoo in reply toAgedCrone

Thank you xx

Juliachoo profile image
Juliachoo in reply toAgedCrone

The hospital are not offering infusions to me now xx

AgedCrone profile image
AgedCrone in reply toJuliachoo

Did they say why?

Juliachoo profile image
Juliachoo in reply toAgedCrone

Only that they were not offering them at the moment, I didn’t question why x

AgedCrone profile image
AgedCrone

That’s a shame as I have found them really convenient& even better they have worked really well for me.

craftmay71 profile image
craftmay71

I take Humira - very easy to administer & it doesn’t hurt at all- I just get a little rash sometimes. However I’ve been told I need to move to a biosimilar - I don’t have a choice. I’m happy to try it & just hope it doesn’t cause me any issues. With Humira you store it in the fridge & I was given a small travel case to use with ice blocks. However once it’s out, you have 2 weeks to use it but don’t store in the heat.

Juliachoo profile image
Juliachoo in reply tocraftmay71

Thank you, who gave you the travel case please? 😊

craftmay71 profile image
craftmay71 in reply toJuliachoo

Healthcare at home when they first came to show me how to use the pen

AgedCrone profile image
AgedCrone in reply tocraftmay71

Just to butt in...You don’t have to change to a a Bio similar if you don’t want to. NICE regulations say switching must be done with the consent of the patient.

If you can get hold of the rheumatology pharmacist at your hospital and have a word with her/ him And explain your reasons for not wanting to change you may find they will let you remain on Humira.

I know people who have done this.

craftmay71 profile image
craftmay71

Thank you for letting me know. However my consultant has told me I don’t have an option ☹️. I may take a look at this again then

Paula-C profile image
Paula-C in reply tocraftmay71

You have got an option, link to NICE guidelines to follow, last paragraph. I think their just trying it on with patients and hoping they'll switch with no trouble. I was told I had to switch from enbrel to a biosimilar, I typed notes up detailing what I'd found out about the new drugs and my thoughts and fears about switching, adding that I should have some say in what toxic drug I inject into my body....consultant told me since I can stay on enbrel.

nice.org.uk/Media/Default/A...

craftmay71 profile image
craftmay71

Thank you SO much for this link. I will definitely take a look 😀

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