another step towards the anti-tnf infusion today

Wonkylegs

well, seen the rheumy nurse today, filled zillions of forms in not to mention the additional 3 blood tests (had the four usual ones done only yesterday :roll: ) a chest x-ray and an x-ray of my feet.
(why did I have to go all the way to the other hospital last week for the hand x-rays then :? :? :? )

Apparently I have to be seen by the chest clinic to check for TB, and then they can apply for funding.

who knows how long that will take, but she thought about a month.

gulp!

not sure if I'm celebrating or drowning my sorrows :roll:

I'l let you know what happens

wonky

snowball

Hi Wonky, which drug are you applying for funding for :?:

Julie

whalewatcher

Hi Wonky

I really hope this all goes well for you. It sounds like you've done everything you can to get through this complicated system, now its down to the medics to do their bit.
You have a lot of courage & I hope you'll soon be celebrating and feeling well on your new medication.

Take care

Whalewatcher

Wonkylegs

snowball wrote:

Hi Wonky, which drug are you applying for funding for :?:

Julie

hmmm ..... I think it is INfliximab, but the info is downstairs and I am upstairs :roll: and allthese similar sounding names really confuse me!!!! and with brand names and drug names I am still working it all out :oops: :oops: sorry if I got it wrong!!

Wonkylegs

whalewatcher wrote:

Hi Wonky

I really hope this all goes well for you. It sounds like you've done everything you can to get through this complicated system, now its down to the medics to do their bit.
You have a lot of courage & I hope you'll soon be celebrating and feeling well on your new medication.

Take care

Whalewatcher

thanks Whalewatcher
(love the name my hubby is watching springwatch right now which has whales on it .... I've seen a lot of it before but they are so spectacular aren't they!)

thanks for your lovely message - I am not sure I am all that brave .... but we'll see new things are always scary but this is hospital scary if you know what I mean

thanks
WOnky xx

snowball

Good luck Wonky I will keep my fingers crossed for you.

Julie xx

whalewatcher

I know what you mean by hospital scary but once you get the first session over you'll feel better about it.

I'm back on the forum as myself - you already know me as Val from Helplines & its nice to talk to you again.

Whalewatcher

dreamdaisy

Infliximab was fun, I have good memories of it. Toddle into hospital, get connected to an infusion machine via a cannula (not my favourite but our rheummy nurse is fab at them) then sit for an hour and a half, reading mags, having a cuppa and a biccy, rest for a while then go home. Wonderful!

I hope you hear soon and I hope it works for you. DD

skezier

Hi Wonky,

It sounds like a busy day and good luck with the funding issues... that bit gets to me it should be available if you need it.

Hospitals can be scary but fear of the unknown is to. It will be fine I am sure and you have already shown how brave you are so often. you hang in there and hopefully they will come through with the funding and more importantly you will then feel so much better. Love slurps and ((( ))) 's Cris who is not quite all here just yet xx

kathbee

HI Wonky

Hope the anti-tnf works out well.

You seem to be going thru similar to me cos on the 7th May
at my rheumy appointment I asked about anti-tnf treatment
as similar to you ( I think) I have been on MTX and Leflunomide for
around 10 yrs and was feeling quite poorly, stiffness, exhaustion
the usual. Same day they sent me up for a chest x-ray, blood test
then the following Tuesday I had a TB test and was given
3 drug info sheets to bring home and choose which drug
I would like to go on.

Infliximab (Enbrel)
Etanercept (Remicade)
or Adilumabab? (Humira).

I chose Humira, I get the stuff delivered and inject myself every
2 weeks.

The following Friday, result of my blood test showed a RF of 287 and rheumy nurse told me I was quite poorly and of course I did feel really bad, she showed me how to do the injection and hey presto I am now on anti-tnf treatment.

So quite a simple procedure to get it, I reckon our Health Authority must have a bit of spare dosh in their budget :roll: I had imagined allsorts of red tape, and its rotten to have to fight for the drugs that would benefit, I feel I should have had them years ago, fingers crossed just hope it works out.

Hope all goes well,
Let us know how you go with the Infliximab.

Love Kath

woodbon

Hello,
I'm sure most of us would be nervous at the thought of having a drip infusion, but it may help you a lot and that would be well worth it. I am so sorry that you've got all this worry, its something you could do without.

I hope all goes well and that whatever the medics decide helps you to soon feel a lot better. With lots of love and a hug, Sue xxx

frogmorton

Hi wonky

dont knwo how i missed this :shock:

I reckon celebrating and commiserating

i would be a bit confused too :?

Overall - another step in teh right direction eh?

Love

Toni xx

Wonkylegs

thanks everyone for being so supportive.

Cris & Dreamdaisy - well you two make it sound so much better than my imaginings do .... so I'll go with your knowledge rather than my imaginings thanks

Kath - I am so pleased that it has moved so quickly for you, and that you are able to have the drug you chose. Would you let me know how the injecting goes please? I don't know if you have done MTX injections, but they assure me that the Anti-tnf injections are much easier, but I'm not convinced

I got a surprise this morning ...... an appointment which I assumed would be for the chest clinic, but which turned out to be an appointment for the RHeumatology nurse in February 2011 :shock: :shock:

thansk again
Wonky xxx

skezier

Hi Wonky,

If I can get through mine you will yours Besides we be with you and he will be barking at your veins (if required) and at the drug to make sure it works well for you.

I really hope they get back to you soon as the waiting is always the worse bit. For what its worth I bump into a few people who are having that drug and not one of them have said it isn't working.

Luv ((((( ))))) slurps and he is already barking

Cris xx

Wonkylegs

thanks Cris

You and DD actually made it sound so much better than anyone else had so far ..... reclining on a lounger and doing not a lot, or listening to music, and I really fancied that idea

rhuemy nurse told me I should buy one of these hand help computer games thingys to keep myself occupied ..... she didn't offer to pay for it :roll: but imagined that if my hubby was working then I had no money probs :shock: I wish

I think I may be able to use the CBT work to help me through it ..... just getting into doing the imagery in the next few sessions apparenly. So far just trying 'mindful breathing' and well I need practice it seems :roll:

after last week's session I will never be able to look at a certain cough sweet the same way again!

hugs
WOnky xxx

skezier

Hi Wonky,

I honestly know you can do it. I look at mine as its a week of my life..... ok every 4 months but its still only a week

Boredom is the worse thing but sleep for me cures that unless i am ill otherwise I just count the hours. MP3's or Ipods help but mine gives a headache immediately so ear phones don't always help. A handheld thing would be good but in the same boat as you there

Where I have mine done there are radio's and tv's in the day room if your done on a chair and in the room if you have a bed (I am lucky I get a bed usually cus i do tend to get ill unless they are really busy, though after this week I think they will rethink an armchair)

I think the CBT will help you so much with it, its so good and your dong so well. I drift off and it kills time and makes you feel better. I also go walk about if I am well enough :roll: I feel a bit like a caged Lion in there but its still only a week of my life

You keep practicing the breathing and think your self into a forest or on a beach cus that's the best way to get through the whole thing really and I so agree about the cough sweets have you had the different breathing using your diaphragm as well as your chest

You will get through it and there is every chance it will help so hang in there ad hopefully the funding will come through soon. (((( )))) and slurps Cris xx

janie68

Wonky

I can assure you that the injections are very very easy for anti-tnf, the mtx injections are not nice and I still dread doing them after2 years of doing it! If u have enbrel, it is a pen, you don't see the needle and it is over in 10 secs. Then no or little side effects. Sit back and relax!

Janie

dreamdaisy

Morning wonkylegs, I hope you are feeling OK today.

One of the greatest strengths of this forum, and one of its greatest weaknesses, is the wide range of experience and opinion on meds, their admin and their effectiveness.

If I could have stayed on infliximab I would. It was an absolute walk in the park admin-wise, 'cos all I did was set the Lazeeboy up to my liking, reading, MP3 going if I wished, nibbling food and drinking T. I liked having PA when the treatment was that - it sounds so dramatic, 'I'm going in for my treatment', everyone imagines solicitous nurses, beeping machines, hushed consultations between handsome doctors and the impossibly beautiful woman (me, obviously) lying deathly-pale on the bed. Seriously, girl, it was lovely.

Now I self-inject with the work of the devil and it's nowhere near as much fun. Perched on the edge of the bath, doing nursey stuff, stabbing myself in the stomach with a needle the size of a biro (IF NOT BIGGER), no handsome doctors, no caring nurses, just one, small, bothered husband who hates to see how much it hurts. He does make me a cuppa after, tho.

I had to stop the mab because I developed antibodies to it very quickly. The first session was a joy: I blundered in on two crutches, and WALKED out on none. 21 June 2005. The best day of my life by far. By the end of August it was over. Ho-hum. I had no side effects at all (I rarely do to any of these drugs, that's probably why they don't work!) If you have the chance of infliximab, go for it. It's luvverly. Dreamdaisy.

janie68

DD

I think you're meant to reassure wonky about the delights of self injecting not scare the living daylights out of everyone with your story. It sounds bloomin horrific!! Now I'm scared!

Janie. (who has now been damaged by the needle looking like a biro!)

dreamdaisy

Did you note the first part of my post? Self-injecting isn't easy at first but you get used to it. If I had the choice it would be infliximab over humira every time for ease of admin but at least the hum has reduced inflammation levels for ten months now. That's something in its favour. On the other hand my arthritis has worsened to an astonishing extent. That isn't. DD

Wonkylegs

janie68 wrote:

Wonky

I can assure you that the injections are very very easy for anti-tnf, the mtx injections are not nice and I still dread doing them after2 years of doing it! If u have enbrel, it is a pen, you don't see the needle and it is over in 10 secs. Then no or little side effects. Sit back and relax!

Janie

HI Janie,

thanks for that! I did manage to do the MTX for two years, but then I started to find it more and more of a struggle. I would leave it later and later in the day. It got so that my poor hubby had to almost bribe me to do it so he could go to bed knowing I had done it ..... I remember mars bars featuring large on a TUesday evening

The needle isn't that bad for the MTX, for me it is the fact that I have to put it into me and then press the plunger that gets me ..... especially on the occasions when I hit a nerve and it hurts

so for two years now my GP surgery have been brill and the nurse has been doing my MTX for me. She's happy & I'm happy, but the hospital still see the final goal being me (or my hubby) doing it for myself. they are leaving it as it is for now but they are not going to give up I think. :roll: :roll:

Infliximab first if they get the funding ...... if that doesn't work out then it will be either enbrel or humira & me having to give them myself. :roll:

hugs
WOnky xx

Wonkylegs

dreamdaisy wrote:

Morning wonkylegs, I hope you are feeling OK today.

One of the greatest strengths of this forum, and one of its greatest weaknesses, is the wide range of experience and opinion on meds, their admin and their effectiveness.

you are certainly right there .... when you've been on here a while you get used to the wide variety of experiences and the varying and contradictory info given by different doctors about the same meds, but for those new to it it is soooooo confusing at times.

dreamdaisy wrote:

...no handsome doctors, no caring nurses, just one, small, bothered husband who hates to see how much it hurts. He does make me a cuppa after, tho.
Dreamdaisy.

you have a hubby like mine then! HE hates to see me worry about it, and when I did the injection he used to hovver trying to be helpful whilst trying not to look. I had to laugh at the nurse when she said that hubby could give the jab :shock: he would rather run a marathon backwards whilst standing on his head than inflict the slightest amount of pain on anyone, let alone me.

it isn't just us living with this nightmare is it?! poor fellas, they didn't sign up for it (but neither did we I suppose )

thanks again - I am not so worried now, but will shout nearer the time probably!!!

hugs
WOnky xxx

snowball

Hi Wonky, I've tried Etanercept and Adilumabab I was scared of injecting my self but when I did it I found it wasn't too bad. They didn't work well for me but I do know someone who is doing very well on ANTI-tnf. For the last year I've been having Rituximab which works differently to the others, its by infusion and takes about 4-5 hours you have two infusions a fortnight apart and should last for 6 months and the more you have the longer they last for some.
Still keeping my fingers crossed for you.

Julie xx

dreamdaisy

Oh wonky, so true. My lovely man has been there every step of the way and I am so fortunate. I do think it's worse for the outsiders ( as I call them). They cannot change a thing and that must be so frustrating. I can do this on my own ( and sometimes would prefer so to do) but I am blessed that he has stayed with me. (He is now cooking and swearing at the radio!)

I hope that what I posted earlier hasn't muddied your waters too much. I can only offer my experience, that's all. Given the choice, infusion every time. Wishing you well. DD

janie68

I'm going for an emergency rheumy appt tomorrow, the enbrel is failing after only 6 months. So I will be looking at other options, one of which will be the infusion but does it last? Can you go on mabthera after only one anti-tnf?

Infusion sounds like an outing and at the moment I don't go out much so maybe that's the way to go!!

Janie

kathbee

Kath - I am so pleased that it has moved so quickly for you, and that you are able to have the drug you chose. Would you let me know how the injecting goes please? I don't know if you have done MTX injections, but they assure me that the Anti-tnf injections are much easier, but I'm not convinced

Hi Wonky

Hope you are not too bad at the mo.
Presume you have not heard anything more re the anti-tnf as yet?

I just did my 2nd injection today and it didnt even sting. I was put on Adilimubab (Humira) 2 weeks ago and it seems (touch wood) to be already working. Cant believe it.
No, I have never done my own MTX injections, always went to the hospital and have been back on oral MTX for a few yrs now.

So dont worry if you have to inject your Anti-tnf, its a pen type injection and you dont see a needle, otherwise I would have been very nervous. :roll:

The reasone why I didnt ask for the infusion anti-tnf ( I had a choice of 3) is that I want to spend some time this summer with my family in Canada and the
8 weekly appointment may have clashed. So far I am happy with the Humira, no side-effects as yet, but it is early days of course.

Let us know when you hear/how it all goes.

Love Kath