puzzled after rheumy nurse phone call re: Anti-TNF

Wonkylegs

Well having seen the consultant last week I had a phone call from the rheumy nurse today saying that she had had the letter from him about starting me on the anti-tnf infusion. (infliximab?)

the consultant said if I wasn't doing my own MTX injection (the GP practice nurse does it for me now) then this was the only one I could start on.

THe thing is that I battled for 2 years to do my own injections, and it was a real battle, and I dreaded every injection day, terrified myself every time I did it, and got into a really bad place about it.

Once I finally admitted what a problem it was for me, they fell over themselves to help me find another way of coping, and my GP and the surgery nurse were fabulous, and I know they don't have a problem with me never doing my own injection again.

The GP doesn't mind me going each week for the injection (I go at least every 4 weeks for bloods anyway)

the nurse is happy to give the injection (and we enjoy a chat too)

I don't mind a maximum of around 30 mins of my time on a wednesday being spent at the surgery, ( I can look forward to the visit) and it takes away all the worry for me about having the jab. I never panic like I used to, and that means a lot to me.

So ..... why am I worrying now?..........

the rheumy nurse has said that they would want me to do my MTX jab under supervision when I went for the infusion. :shock: Her reason is that it would give me back some independence.

I have sat tonight trying to come up with good reasons to try to do my own MTX jab and well I haven't come up with any that outweigh the positives of NOT doing it.

does that make me daft? silly? awkward? or just someone who recognises that if it aint broke it don't need fixing? :? :? :? :?

lindalegs

Hi Wonky,

I should talk to your GP nurse when you go on Wednesday. Why should you put yourself through all that worry if she's quite happy to do it for you. I don't understand why your Rheumy nurse is pushing you to do it yourself ..silly woman. No point in rocking the boat and forcing you to be independent if it upsets you doing it.

Can you pretend to be willing to self-inject and then just let your GP nurse do it for you like she does now?

Luv Legs

dorcas

Hi wonky,

I'm glad for you that you will soon be starting the infliximab infusions as it may make such a difference to halting or at least slowing down the progress of arther.

however the nurse's idea of getting you to inject yourself with Mtx while you're there isn't helpful as it is not what you want is it?....

As you have already tried to be self injecting and it caused you such anxiety .... your rheummy nurse should understand that it is not 'unwillingness' or lack of practice that prevents you injecting.

Although her intentions I'm sure are well meant if you feel that this is putting you under unnecessary pressure then please let her know this and that you would prefer to keep the current arrangements for Mtx injects. with your GP practice.

You are not being unreasonable or silly.......x

Phone her back and let her know that you have decided to leave things as they are. Don't wait until you see her as you will worry about it between now and then.

Big (((HUGS)))

Iris x

dreamdaisy

Your consultant is right - if you don't do your own jabs then it has to be the infusion because all the rest are injected (at least I think they are). Stick to your guns, but personally I wouldn't have meth on the same day as the infusion. DD

Wonkylegs

lindalegs wrote:

Hi Wonky,

I should talk to your GP nurse when you go on Wednesday. Why should you put yourself through all that worry if she's quite happy to do it for you. I don't understand why your Rheumy nurse is pushing you to do it yourself ..silly woman. No point in rocking the boat and forcing you to be independent if it upsets you doing it.

Can you pretend to be willing to self-inject and then just let your GP nurse do it for you like she does now?

Luv Legs

thanks legs

I think maybe it is her job to get us all toeing the line ..... and when I see my rheumy nurse (not the senior one who rang) on 20th May I will ask why they see it is so important, in case I have not considered something that they are.

As for carrying on as I am .... no problems GP wise, just would be tough to pretend on the days when they want to observe me doing it

hugs
WOnky xxx

Wonkylegs

dorcas wrote:

Hi wonky,

I'm glad for you that you will soon be starting the infliximab infusions as it may make such a difference to halting or at least slowing down the progress of arther.

however the nurse's idea of getting you to inject yourself with Mtx while you're there isn't helpful as it is not what you want is it?....

As you have already tried to be self injecting and it caused you such anxiety .... your rheummy nurse should understand that it is not 'unwillingness' or lack of practice that prevents you injecting.

Although her intentions I'm sure are well meant if you feel that this is putting you under unnecessary pressure then please let her know this and that you would prefer to keep the current arrangements for Mtx injects. with your GP practice.

You are not being unreasonable or silly.......x

Phone her back and let her know that you have decided to leave things as they are. Don't wait until you see her as you will worry about it between now and then.

Big (((HUGS)))

Iris x

thanks Iris, you have reassured me that it is not just me being hard on myself again ...... and I'll be asking the, why it is so important to them when I see my usual rheumy nurse on May 20th.

a letter telling me to go for Hand x-rays suddenly materialised today :shock: ..... seems that my consultant must have had a change of heart and decided that my 'just a little bit of OA' needed further investigating after all.

I go for hand x-rays tomorrow afternoon :shock:

Seeing GP nurse tomorrow morning so I'll see what her take on it all is.

thansk again
hugs
WOnky xxx

Wonkylegs

dreamdaisy wrote:

Your consultant is right - if you don't do your own jabs then it has to be the infusion because all the rest are injected (at least I think they are). Stick to your guns, but personally I wouldn't have meth on the same day as the infusion. DD

Thanks Dreamdaisy,

I was aware that the others had to be injected, but they kept saying that I wouldn't have the same problems with them because I wouldn't have to press the plunger or see the needle at all (like I do with the MTX) and I was prepared to have a go.

You got me intrigued :? can i ask why you wouldn't have the two on the same day? I know it will vary from person to person but I'd be interested in what you think as you have been there

thanks
hugs
Wonky xxx

skezier

Hi Wonky,

I wonder what has made her so stuck in you having to do it so they can see...... If she is worried about a back up plan well surely someone in the surgery can help and be that? Like Legs said you don't need to get stressed about it all at all. I hope your doctor can help get it sorted out as well for you. ((( ))) and slurps xx

dreamdaisy

That's what I've been told. My hospital doesn't recommend two heavy-duty doses of their rheumatological poisons on the same day. I do my Humira on a Monday then I get my meth on a Wednesday. When I received my flu jabs the hospital cancelled my meth on both occasions. I also had to shift the humira.

These medicines are strong and unpleasant in their side effects. To me it's logical not to overdo it. For once I think my hospital is right. DD

Wonkylegs

dreamdaisy wrote:

That's what I've been told. My hospital doesn't recommend two heavy-duty doses of their rheumatological poisons on the same day. I do my Humira on a Monday then I get my meth on a Wednesday. When I received my flu jabs the hospital cancelled my meth on both occasions. I also had to shift the humira.

These medicines are strong and unpleasant in their side effects. To me it's logical not to overdo it. For once I think my hospital is right. DD

so do I ..... more ammunition for me to say I think not! thanks

Wonkylegs

skezier wrote:

Hi Wonky,

I wonder what has made her so stuck in you having to do it so they can see...... If she is worried about a back up plan well surely someone in the surgery can help and be that? Like Legs said you don't need to get stressed about it all at all. I hope your doctor can help get it sorted out as well for you. ((( ))) and slurps xx

the surgery have already offered ...... but it doesn't fit their rules and well all they could come up with was terrible problems getting my nurse trained :shock: she is more capable than I am and they think they can train me :roll:

I;m not going to lose sleep like I would have before, but I think this time I am really going to stand up for myself unless there are some good reasons for doing what they suggest.

thanks
hugs from me & slurps from littlelegs

angel1

You really don`t need extra stress Wonks. Living with the disease daily, creates quite enough.

I feel that, because you are a someone who likes to be given reasons for certain actions, this is why you are concerned. Things need to make sense. That, to most people, is the only way to handle what life chucks at us. So, ask, and if you`re not satisfied, ask again. Then depending on what you are told, make a decision.

Much love to you.........Ange.

frogmorton

Hi wonky

I cannot beleive them!!! Give you back some independance my backside!!! Indeed!!!

I am fuming on your behalf even if you are being so calm about it

I am an absolute whimp when it comes to needles full stop - I am so totally with you on this opne - the nusre is happy - you are happy - how exactly does THAT affect youyr 'independance'?? patronising :!:

Go Wonky

Love

Toni xx

Wonkylegs

thanks Toni & Ange,

you both said similar things to my therapist this afternoon

so we will see ..... I'll ask first, listen to what they say, then have my say and we'll have to come to an agreement.

I'm just not going to blindly do what they tell me to any more ...... and I'm learning that I need to do what is right for me

thanks and lots of hugs to you both
wonky xxxx