anti tnf appt

salamander

Just back from hospital and the appointment went well. No mention of being assessed again, just blood tests. Had other tests more recently so didn't need to be done. He said my rash was definitely a drug allergy rash. Need the ok from one of my other consultants for another condition and I'll be starting Cimzia (?) along with Mtx next month. Aaargh! Scary or what?

skezier

Hi Sal,

Glad your back and I didn't snore too loud

Hey it might be scary, I think a lot of mixed emotions on this one flower but ti might really help you so fingers crossed.

Right you want a cuppa? Forgot the flask today ((( ))) and a hope they will get back to you with a start date soon. Cris xx

salamander

Cris, thanks for the company! Just got to wait to see the other consultant on 14th December so will start soon after then. It's a bit of de ja vue as was in the same position vis a vis Mtx last year! Just in time for Christmas, typical!

But you are right, it might well help and that would be fantastic.
thanks again for your support, couldn't manage without it.
xx

dreamdaisy

It's not scary: you are closely monitored when on these things - which is sometimes more frustrating than everything else! - and as you say - it might well help. Welcome to the tightrope of expectation! I have teetered along it a few times now, I have learned to look straight ahead and be confident. I wish you well. DD

PS Did you use your badge?

frogmorton

i am pleased for you Sal

This is good news. Glad all is well and ready to go..

I think i like DD's analogy just go don't look down!

Love

Toni xx

salamander

Thanks DD and Toni. Yes, on the path now! I feel so tired today, I don't know why, can hardly keep awake. No I didn't use the badge DD, have to register for congestion charge and also tricky to park there, easier on the bus! Scared to use it in case I get it wrong!

alarkra

Hi Sal!

Glad it all seemed to go well. With this anti-TNF did they say if you will have to have an infusion with it or is it a self-injecting one?

Oh and I know why you are so tired - it's all that pent-up angst about going to the hospital today - now that it's over, you are totally relaxing, hence the extreme fatigue. I always get like that when I'm specifically anxious about something important, especially when I go to see The Man!

(((HUGS))) Have a nice little nap, you deserve it! xx

barbara12

Hi Sal
I am glad the appointment went well for you,its normal to be anxious about taking something new, but they will monitor you, and everything crossed you will get allot of benefit from the new meds
Love
Barbara x

salamander

Thanks Alarka and Barbara.


Alarka, I'm not sure to be honest. I know I have to have mtx injection but don't know about Cimzia. Said something about inflammation at injection site but that could be either.
The appointment was nothing really, just health check and joint count but I only got the appointment yesterday so no time to get worked up. But also no time to get any questions ready but will have an appointment with nurse in any case.
xx

dreamdaisy

Once or twice I have had a little redness on an injection site with meth, no pain or itching tho. With the humira I have had one or two bruises, but that's only 'cos I hit a capillary/capillery? Neither of those look right! AH - it's the first one! The humira also stings somewhat but that is due to the preservative and is lessened considerably if I take it out of the fridge first to warm a little - they say to do so for 15 minutes tops. With cimzia I have no idea: never tried it.

I wish I was allowed to do my own meth but no, I have to flog to the hospital once a week for it, which really gets my goat. I wish you well with it all, it's really quite straightforward. DD

dorcas

Hi sal

glad your appointment was straightforward...... now it's just the waiting to get started. :!:

I really really hope the cimzia works for you.
My rheummy wanted me to go onto cimzia but it isn't licensed yet for treating PA (Scotland)

good luck with it sal.... and let us know when you get a 'start' date.

Iris xxxx

tillytop

Hi Salamander

I am glad that you now have a definite way forward following your appt today and I really hope that you find that the new drugs help you.

Re injection site reactions: When I was injecting Humira, and gettting significant injection site reactions the rheumatologist recommended over the counter one-a-day "non-drowsy" antihistamine tabs which helped hugely. I just took one tablet an hour or so before the injection as recommended and it made the world of difference. I sometimes needed to take a tablet for the next couple of days too but it certainly solved the problem. Might be worth asking your rhuematology nurse for advice when you start so you know what to expect and what to do if it occurs.

Love Tilly xxx

salamander

thanks Tilly and Iris.
DD why can't you do your own methotrexate?

dreamdaisy

I wish I had the cosgans available - there is a lovely one of a witch chucking stuff into a cauldron! They brew the stuff at the hospital every Monday, then do meth clinics on Tuesday and Wednesday. It's the way it's always been done and they don't want me stepping out of line! It's the old argument 'If you do it every one else will want to as well.' So what? I know full well that everybody wouldn't want to - there are those who cannot stomach the notion but it would free a rheumatology nurse for part of the time each day, so perhaps they could actually MAN their helpline. Shock, horror, what a disagreeable notion!

Actually, it does have two uses: it's easy to get my blood results for my meth book and I can nag things over if something is not going well, but generally it's a pain. The parking is a nightmare, BB or not and the waiting around is a nuisance - as I might have mentioned in a rant or two on here!

salamander

That's not really a valid reason is it? As you say, what would be the problem if they did?

Diabetics do their own injections from quite a young age so think they would trust you to do the same. Like you, there's no where to park - my hospital is in central London and even blue badges don't hold much weight in that part of the city. I wouldn't like to have to go every week, it would take half a day.

My rheumy nurses are brilliant, very responsive and supportive (now that I've dumped the patronising one.) Yesterday I rang about the rash and got a call half an hour later telling me to stop Hydroxy and come for assessment today. All a bit quick for my liking, a girl can hardly get her lippy on

Wonkylegs

gosh they certainly move quickly in your part of the world :shock: :shock: :shock:

took me 6 weeks to get a diagnosis of a drug reaction for my rash :x and months from them saying they were going for the anti-tnf to getting a letter telling me that another letter should be coming with an appointment for me (it hasn't come yet ...... and I am getting a bit fed up with waiting for he post and then feeling let-down again!)

good luck (haven't heard of you drug - wasn't one of the choices here) & I really hope you can get some relief from your rash too.

WOnky

dreamdaisy

I hope this follows the forum rules: I think your helpline reacted exactly as it should, your message alerted them to a potential reaction and they gave you good advice. I have noticed that when I ring with something like that they are quick to respond, they know that the drugs we are on can cause, ooooh, how shall I put it? - unpleasant reactions that could indicate a deeper problem, so they do get back to one pretty swiftly.

I don't understand their reasoning either (sorry, back on meth jabs). I would have to go to the hospital once a week anyway, to collect the stuff, so I might as well get stabbed there if I am there anyway! It's all part of life's rich, arthritic tapestry. DD

cherrybim

dreamdaisy wrote:

I don't understand their reasoning either (sorry, back on meth jabs). I would have to go to the hospital once a week anyway, to collect the stuff, so I might as well get stabbed there if I am there anyway! It's all part of life's rich, arthritic tapestry. DD

I'm a bit puzzled DD but with your capability for erudition you'll explain it I know

How do you get your supplies of Humira? Is it by a delivery company? If so why can't they also deliver the meth? :?

Don't tell me that one has to be refrigerated and the other doesn't, therefore they can't have both on the same van :shock:

(Meth was a no no for me so I don't take it in conjunction with Cimzia)

Cherry xxx

salamander

Hi Wonky, I think I was probably lucky with the appointment. Was due to see my rheumy in Jan with a view to start me on this drug in any case. Haven't got them yet! Anything can happen between now and then Still got a couple of hurdles to go. I wonder what is going to happen with abolishment of NICE? It should be that if your consultant recommends the drug you will get it so not so many hoops to jump through.

DD, with my Mtx they gave me 8 weeks supply to keep in the fridge. Guess they don't want to see their patients as often!

dreamdaisy

I hope this follows the forum rules. Hi cherrybim, right: my humira is delivered by H@H, every few weeks. As my hospital makes their own meth whoever is on it has to go to the hospital - I don't know of, and have never heard of, any patient there being allowed to do their own. It does seem daft to me, but there we are, I am only a patient. I actually cannot remember how long this has been going on for me: I only aquired a meth booklet in December 08 and I think I had been on the stuff since way before that date, possibly the spring of 2007 - that would fit, I was off all meds for three months after enbrel went wrong. Strewth, every Wednesday (with some exceptions) for at least 3.5 years, time flies when one is having fun. DD

skezier

Hi Sal,

I kinda interested in that bit about the getting the drugs....

Just leaving you a ((( ))) and will go armed with the info in December.... Mind I have only failed on 2 drugs so far so will have to fail a 3rd I think? Love Cris xx