Help! Advice needed Anti tnf Assessment tomorrow!

salamander

Things move fast around here. I rang rheumy nurse about rash and numbness I am getting in my fingers this morning. She rang back half an hour later saying consultant says stop Hydroxychloroquine, have blood test and come for anti tnf assessment tomorrow morning at 9.30 am! Also to get knee checked as has flared again.

What should I expect?

I'm worried as the steroids have calmed down quite a number of my joints so am worried I might fail it. Also, do I really want anti tnfs? I've got a booklet from NRAS and not sure I like the sound of them.

skezier

Hi Sal,

You know I don't know what to except .... I just envy you!

They must give you a bit of a check out and then decide if you can tolerate it? Someone who has it will be along soon flower but you mustn't worry.

As to do you want them..... I think anything that brings you under control must be a good thing? I kinda bias cus my pa isn't under control and they have told me I wont get funding.... I think I need to test that theory unless the mtx actually starts to work o this does......

Shall be in your pocket and fingers crossed flower. A (((( )))) and a hope Cris xx

Wonkylegs

HI Salamander

all I can say is WOW!!! that was quick!

I can understand you feeling a bit thrown with it all coming at you so fast. However, from my own personal experience I'd be surprised if you were told at the appointment whether you could go straight to anti-TNF.

my understanding is that you have to have two assessments several months apart, in order to qualify for the drugs. My memory is that I had to go through several quite long forms with my rheumy nurse, answering loads of medical history related things, and also disease activity stuff.

I also had x-rays of feet, hands and chest & because I had some possible contact with TB in my past, I had to have a Mantoux TB test. Not sure if everyone gets this test, but possibly, as the anti-TNF drugs can awaken latent TB (not the highly contagious type) ....so they test & treat it to avoid later complications.

then she went away and sorted the paperwork .... and applied for funding ..... which in my case felt like it took forever. :roll:

I panicked at first, but then I decided that I was actually quite lucky to be considered for this treatment, because not that many years ago I would have been at the point of being told there were no more treatments available to me :shock: and I certainly am grateful that at the moment that isn't the case.

I would go armed with a list of your concerns, and ask all the questions you want to - they know much more about these drugs than most medical professionals, and will have been asked most things before

best of luck & let us know how you get on won't you please?

hugs
WOnky

dorcas

Hi sal

The rheumy's decision about starting you on anti- tnfs I think is based on the failure of previously tried standard treatments in controlling the disease and also on your joint 'activity' history.

Before I started on anti tnfs (7yrs now so am thinking back a bit) I had xrays done, TB test, blood & urine tests, height and weight and a DAS (Disease Activity Score) carried out so that they had a baseline to refer to. I also had to answer a multitude of questions about my medical history and whether I'd had any recent infections / antibiotic therapy. It also took several weeks from assessment to starting the treatment.

Starting any new treatment is thought provoking and no-one can tell you what would be the right decision for you to make regarding anti tnfs. :roll: For me it was a choice of having the PA running rampant (with all that entails) or trying to dampen it down with biologic therapy.

I haven't regretted being on anti tnfs and am now on my third type. If you do decide to go down this treatment route you will be very carefully monitored and any changes or concerns quickly dealt with.

Good luck with your decision Sal. :!:

Iris xxxxx

salamander

Hi Wonky - I know! I'm a bit shocked to be honest but, from what you say, the sooner I'm seen the better. Now that NICE is being abolished I wonder if that has changed things though would be surprised if it happening so soon.

Yes, I'll do my research tonight. Got the leaflets. What with getting my blue badge today everything seems to be moving fast. Perhaps I'll have to send it back soon

how are you btw?
xx

kathbee

Hi Sal

At my rheumy appt in May this year, I was told that the present DMARD's werent working for me. I have RA, So it was suggested that I considered Anti-TNF treatment.

I was given some info sheets about 3 different types of Anti-TNF drugs, which I had the choice of, had to have a blood test, had a TB test which was a small needle inserted under the skin on my forearm, no, it didnt hurt . A couple of weeks later I returned and was told I had a RF of 246, and she said I was def a rheumatoid, the TB test was ok and she looked at all my small joints, knuckles, fingers etc. Was surprised to find they dont include feet, of which mine are really painful. I think you have had to have tried 3 of the DMARD's before you can be put onto Anti-TNF treatment.

She gave me a prescription and all on the same day, I was shown how to inject myself as I had chosen Humira (adalimumab) and then started with deliveries of the drug to my home to be kept in the fridge, to inject every 2 weeks.

Sadly for me, 6 months with the new drug caused too many side effects. Apparantly I am one of the 1 in 10 who get muscloskeletel pain, which is not a good sign when I am trying to ease the RA pain, :roll: it affected my digestive system and my nails stopped growing completely.
So am now off the drug until I go back in January.

Hope you get sorted out very soon as I know some people have had to wait ages for funding and tests etc.

Love Kath

skezier

Sal a quick hi-jack xx

Kath hoe are you! Long time no see and I am so glad to see you! A huge but none hurting ((((( ))))) and so many hopes your ok? Love Cris xxx

speedalong

Hi,
I can't offer any advice (I have OA, so different treatments altogether) but just wanted to wish you luck.

Speedy

debsmartin

Hi
My assessment was similar to Kaths, I had a TB check, x-rays and that my joints checked, I too was surprised that feet and ankles aren't checked as these are my worst joints. I had my first assessment then had to go back in 6 weeks for my 2nd where I was told I qualified for Anti-TNF, I wasn't given a choice my rheummy had already told me I was being assessed to use Enbrel. It was then training on how to inject myself then on the 2nd week I was told I was doing everything fine and then the home delivery of enbrel started. I did have one hiccup, I had an allergic reaction which only appeared on my tummy but that settled doown and have felt really good since then. Just been for my 3 month check and they are really happy with me as well so I am really pleased. Good Luck
debs

kathbee

skezier wrote:

Sal a quick hi-jack xx

Kath hoe are you! Long time no see and I am so glad to see you! A huge but none hurting ((((( ))))) and so many hopes your ok? Love Cris xxx

Hi Cris

Hope you arent too bad, and not too many places hurting
at the mo.

Was at our son's in Canada for a while and then had a bit of bother getting onto the new site.
Likewise, sending lots of love and hugs.

Kath x

Love Kath xx

julie47

Hi sal

no advice from me because i am not on anti tnf all i want to say is good luck at your appointment tomorrow, yes that was quick.
Hope they give you plenty of advice to help you make your decision.

Will be in your pocket
Juliepf x

skezier

Sorry Sal.... xx

Hi Kath,

Glad you got back in and its really good to see you!

Hope you enjoyed your tome in Canada.... Tis a good place eh?

You keep popping in cus some of us misses you! Love and a ((((( ))))) Cris xx

Rainbow77

Hi Sally

I am glad that you have got your appt for tomorrow as you have really really suffered over the last few months.

I don't know much about anti-tnf's so can't chip in there but just wanted to add my support for you. I think you said that you had a good rheumy so if you have any questions ask away. I really do hope that they can help you.

Take care and let us know how it goes

Fayann xxx

dreamdaisy

Anti TNFs are not the answer for everybody, but for some they work very well indeed. You won't know which group you fall in to until you try. Good luck, I think there will be a few tests etc to be done first, I honestly cannot remember now what I had done when I first began them, I vaguely remember having a chest Xray before I began humira, I am sure your rheumatology team will steer you thro everything! I wish you well. DD

salamander

Thanks for your replies everyone. I see it is going to be a longish process but will prepare myself for a long morning at the hospital. Will let you know how it goes.
xx

alarkra

Hi Sal,

Wishing you the best of luck for tomorrow! I'm very curious to know how it all goes and what they put you through - as you know, I may be going onto anti-tnf's in Feb when I next go back to see The Man, so it will be most interesting to hear about your experience. I hope that they come up with the perfect solution for you! ((((HUGS)))) xx

skezier

Hi Sally,

Good luck flower and going to kip in your pocket so I don't miss you. ((((( ))))) and fingers crossed. Cris xx

joon51

Morning Sally good luck for todayxx

salamander

thanks everyone, especially Cris, who is coming with me Will report back later.

dreamdaisy

Wishing you well for today, salamander, I hope it all goes smoothly. DD

julie47

Hi sal

Just popping on to wish you good luck for today.

Will be in your pocket too.

Juliepf x

Poppyg1rl

Hi Salamander,
Good luck for today, don't do what I always do when seeing my consultant and forget to ask something!! take a list of questions.
Hope it all goes well for you
All the best Poppy x