I've asked this question in my thread about starting anti tnf's but thought I ask again incase it's been missed.

I'm due to start taking it soon, but have read that two other ladies on here, just been given the go ahead have both signed a form regarding taking anti tnf's, I haven't signed anything. I have seen two different nurses and am now wondering if each one thinks that the other one's done it.

Also, when I enquired about an appointment about having my blood monitoring done was told that I am now going to start having bloods done every two months and not once a month. I am sure that I have read somewhere that when you start taking anti tn'fs you have to have regular blood test done at first.

Can others already taking anti tnf's post about what happened with them please.

Thanks

Paula

Hi Paula,

Yes, I had to sign a form when I started humira - the hospital kept one copy and I have the other.

I had blood tests every four weeks, plus a MSU until I`d been on the humira for three months, then went on to bloods etc every 12 weeks.

Good luck for when you start.

Kathleen x

hi Paula,

i'm not entirely certain if i signed anything .. but i think i did from memory, i remember being given the help pack with DVD ( my Hubby was with me at the time as i wanted him to know all about the drug )

but my bloods have always been taken monthly and that didn't change once i started Humira,

hope you are feeling easier about D Day,

keep us posted,

Suzanne x

Strange isn't it how different hospitals work? I've just put this in a post about DAS scores. I think that if I should of had to sign it would of been picked up by now, am not going to ask. Reassured that most of you carry on as normal with your blood tests. I haven't been given a DVD, does this come when the drug is delivered?

Paula

I already inject MTX so I suppose there wasn't a need to give me a DVD. I've just be speaking to to my specialist nurse about something else so I decided to ask her about signing a consent form and they do it by verbal consent and not written. Had visions of nurse who comes to my home asking me if I had signed on the dotted line, me saying no and then refusing to let me do it.

Paula x

Hi Paula, over the last couple of years or so I've tried enbrel, rtx and now abatercept.
I have not signed anything for any of them, I was given a pack with enberel but no dvd as far as I can remember.
I do however continue to have bloods monitered every month as no one as told me otherwise.
Try not to worry about it all too much, the thinking about it, I have found much worse than the actual thing itself!!
Good luck Zena xx

hi Paula,

Heathcare at Home sent me a digital thermometer this Summer, for when i went on hols in this country. they were brilliant.

i rang to ask the best way to travel with it .. it was going to be about 6 hours before i got to our destination, and i received it by next day delivery.

i bought a very small cool pack, my Hubby wrapped the Epi Pen in two layers of bubble wrap and i kept it in the front seat of the car to keep a check. i think they say 2 - 8 degree's, after about 3 hours the temp was going up slightly but still in the range so i removed the first layer of bubble wrap and all was fine. the Hotel housed it for me in their kitchen fridge.

i really don't google well definately don't google about health and drugs, for me it's a big NO-NO. i prefer to listen face to face with Consultant, GP etc.

i will be thinking of you next week and hope to hear all went well which i'm sure it will.

Suzanne x

hi Paula,

well confused here as well now .. lol,

i think the people i would listen to are definately the Pharmacist from Health Care at Home, they would be the one's i trust the most.

that's quite amazing to me that you could leave the meds out of the fridge for 4 weeks ..when we have to put the drug in the fridge upon receipt of it.

on the note of keeping it cold while travelling, i used two travel freezer packs in my cool box and had the Epi Pen in between with two layers of bubble wrap around it, but i have been told that freezing small bottles of water is better ( this was from my friend ) she said they can stay frozen in a cool pack for the best part of two days. so i would try that one out while you are at home.

do let us know what the Travel Department says, this is who i spoke to when i wanted advice ( it was a Pharmacist that called me back from the department ) and gave me the information.

hope all becomes more clear soon,

i will be interested to hear what they say.

Suzanne x

Well enbrel arrived and is now in the fridge. Impressed with the digital thermometer, you can set an alarm on it so you know if the temperature isn't right. There is a probe that you put in the fridge that in turn is attached to the digital read out thing. Having fun at the moment getting the setting right on the fridge. At first it was at 5. something, then after we had put shopping in it rose to 9. something. Panic stations here, turned the fridge down lower, husbands just come into the lounge and told me I've turned it down to low. Can't really judge the right setting because we are in and out of the fridge at the moment. I getting a bit worried about it all, keep checking the temp. I am going to see what it is later tonight just before I go to bed, don't want to wake up in the morning and find it's too cold and it's frozen. I am assuming that there is a little leeway with what they tell you, just incase your fridge is not working properly.

Suzanne

I have had the call from Health Care at Home, we only talked about enbrel and not humria that you are on. She did agree with what I was told before that the information supplied by NRAS was out of date. (It did say on the paper that humria could be kept out of the fridge for 24 hours and then put back in the fridge, I don't know it that is different now). She said that the information that they now give about travelling with enbrel changed last year, without checking your post I am not certain when you started taking humria or when you was given your information, but if I was you for up to date advice I would ring to check. The direct phone number for pharmacy is 01283 501390.

Back to what I was told about enbrel for anyone else on it. She confirmed what I was told that you can in deed keep it out of the fridge for 4 weeks (unrefrigerated) and it is still safe to use. I was telling her that I would do that because I didn't think that it would exceed 25 degrees but she more or less advised to try to keep it at the 2 - 8 degree temperature, telling me it would be fine if put in a cool box along with an ice block (wrapped in bubble wrap). I told her I thought that you can't take ice blocks through security and she said that they will probably put it in the x ray machine and it will be OK. Then asked which airport we are flying from, Manchester (flights now booked), was told that they are strict on security (sod's law there I thought). She did say that if I did have any problems and it is taken off me just to buy a cold can of pop and put that in the box airside. I said that once I landed I could always buy some more cold pop if the temperature is getting too high.

She said that they can only advise what to do and it really is up to the patient to make their mind up what to do. I asked what would happen to the drug and if it was safe to still use if it got too warm, it is but it wouldn't be so effective.

Been reading the literature that comes in the pack. Read about taking it out of the fridge for 15 - 30 minutes before use, had to laugh about not putting it in the microwave oven to warm it up before use.

Just waiting now for the phone call for nurse to come.

Paula x

Paula

If I remember rightly (I only started enbrel in August so I you'd think I would!) After the 2nd h/care at home nurse visited I had to sign something that stated I understood how to & was happy to inject myself. I never signed anything at the hospital.