Biolgical treatment assesssment

topgirl

Gosh folks,

Not been on here for ages but have been busy trying to fight my RA , working and dealing with kids!!

Ok....After being on Methotraxate for a couple of years I have been told it's no longer working and my Consultant is pushing for a biological treatment..

Problem is the cost...They are not routinely given out in my area so i have to have an assessment to see if im 'worthy'...Its this Friday...

I know its done on a point system and my consultant has told me to come of painkillers etc...to ensure i'm as bad as possible...which sound mad i know but there is method in his madness!...

So has anyone had to fight for these drugs???...had assessments etc???...I thought I would just get it !!!!....

I would be grateful for any advice...

Thanks

Kay..xx

dreamdaisy

I qualified on a DAS score but for the life of me I cannot remember what it was. I am currently taking Humira (cost about £8000 per annum I think) and this is my third and final anti TNF treatment. We are expensive patients and we are growing in number. I hope you qualify for one, I hope it is granted and I hope it helps. DD

topgirl

Thank you....

I think that im getting a bit worked up that my DAS wont be high enough....My RA is sero-negative and my bloods show nothing!!( I had to have samples of tissue taken for diagnosis...)
But my nurse said that its lots of things....recently i have developed nodules and my nurse said this is pointed too...
She also said dont put make up on...lol....xx

frogmorton

Hi Topgirl

Awful isn't it? In some areas they dont give it at all to those with PA either so l have heard this sort of hassle before.

How awful having to leave off your pain meds? am l right this includes your anti-inflams as well?

Good idea to look pale and listless if you can.

Love

Toni xx

topgirl

Yes...
Of anti-inflams too....horrible week..of work as there is no way i can cope...xx

barbara12

Hi Topgirl
Sorry I cant add to what the others have said, but I just want to wish you good luck, and please let us know how you get on.

topgirl

Thank you everyone...It means a lot..xx

salamander

Hi, don't get too worked up about the assessment. If you are bad enough to get it, you probably will. Everyone has to have assessment and some of it goes on how you say you are. So don't be shy about telling it like it is.

Btw, I am sero negative and because was on steroids, my bloods showed nothing either. I did drop down the steroids before the assessment, otherwise they are not getting a true picture. I had to have two assessments a month apart.

Good luck.

topgirl

Thanks Sal.!

Its been a long hard battle....and being seronegative made me feel a bit of a fake at times....
I had steriods for a while...they worked and helped to get me back to work.
Ive had all the usual stuff...most recently went up to 8 methotraxate...But my consultant says the reason i seem to cope is the vast amount of Tramadol/ Codine.....and if he was doing his job right...i shoudnt need as many...hence assessment......
xxx

theresa4

topgirl wrote:

Thank you....

I think that im getting a bit worked up that my DAS wont be high enough....My RA is sero-negative and my bloods show nothing!!( I had to have samples of tissue taken for diagnosis...)
But my nurse said that its lots of things....recently i have developed nodules and my nurse said this is pointed too...
She also said dont put make up on...lol....xx

My bloods dont show much of anything either Im sero neg too but I have had 4 biologics Im lucky as my hospital is running the trials so there are no limits to how many you can try. You doc is right your DAS score needs to be high for you to start on them so coming off all pain and anti inflams will show just how bad it is. a starting point is 24 swollen/tender points not including feet. I used to just get in only just with all fingers 2 joints each wrists, knees now I could fit the criteria easy with my shoulders hips etcc...... when I didnt have enough they used a clinical decision to say as my ankles and toes are bad too that they could let me in but as I said I am at a trial running hospital and centre of excellence for biologics so that may be why.
Good luck I do hope you pass for them at least you may be a lucky one they work for.

topgirl

Thanks...

Found that really useful....I take it they have not been successful for you...???
Im sad to say i had to take Tramadol last night....im gutted but i couldnt even hold a cup and the pain was all over...
MMM...interesting about feet as this was my first joint affected ( i tho id broke my toe..)and have a nodule now..( which you get points for!!)
Its mad isnt it???...I never tho i would have to fight to get treatment!!!
Anyway...thats it...no more painkillers till tomorrow afternoon....
Good luck with your fight.....
xxx

ritwren

topgirl I just wanted to add my support to your assessment.Don't be beating yourself up about taking some pain meds, so long as you've not taken them for the day or two before your assessment then you'll be able to show them how painful your joints are. Donh't hold back when telling them, give it to them hard and straight.
I hope it goes well for you and think it's a real shame that folk have to go through these assessments to get the treatment they need. When I told my daughter about it she was shocked. I think the public is generally unaware. Good luck. Rita.

salamander

I find it very odd they don't take feet into account for DAS score. Standing and walking are major functions and I have problems in both my ankles and some of my toes - my feet were the first things to be affected and no-one took any notice!!

kathbee

Hi

My DAS (disease activity score) was 6.9 when I was assessed for anti-tnf's.
Should be around 3 I was told.
I have had sero-positive RA for 13 yrs and have tried a few DMARD's.
Still have to take MTX on a weekly basis though.

I tired Humira for six months but it didnt like me.
I have now had the first of Rituximab infusions in July and have to say that some of the exhaustion linked to RA has eased slightly.

I have OA as well though and the bad wrist and knee pain is partly due to damage over the years with RA.

Oh and I was told about the feet not being included.
My feet and hand pain were the first signs of the disease as I think a lot of others have too.

Hope you get a good outcome from your appointment tomorrow.

Kath

selfie

Hi Topgirl
I had my assesment for biologics two years ago after being told the RA was damaging my joints I realised I needed more than the sulfasalazine I was taking.
My DAS score came in too high, which made no sense as I was in pain and unable to work, it was then I realised I needed to come off all drugs in order for all my joints to swell. Over 4 weeks my joints swelled so bad that I could not dress, hold cups, clean teeth etc BUT it was worth it because my DAS score came in and proved how badly I needed something stronger. Took anti inflams in car on the way home and it took about a month for the chest screening and paperwork to go through.

I now have Infliximab by infusion every 8 weeks and it has changed my life so it was definatley worth the month of pain. When I was at my worst it seemed unthinkable that I would be able to live without constant pain. This year I did a triathalon!!
It will be worth it and good luck for tomorrow. If you don't get the score needed you should be able to be retested in 4weeks time so book another appt and come off drugs for longer. Remember when they ask you how you are feeling don't put on a brave face and if they show you a smiley face scale always go for the sad face as this was included in my DAS score.
Good Luck

salamander

I think you have to score over 5.1 on the DAS score.

topgirl

PASSED
And cosidering i looked and walked like something out of 'Zombie Flesh Eaters'im not surprised.. :roll:
Yes it is 5.1 ....
Cant tell you how pleased i am..BUT...I have to have it agian in 4 weeks...but at least i know what to expect know...

It has been a week from hell.....but i cant tell how much your support and info has helped....

now...where's that Tramadol......x

salamander

Well done! That's great news.

ritwren

I'm really pleased for you. Fingers crossed again for the next round. Big hugs, rita.

skezier

Hi Kay,

I can't help flower but just wanted to say how nice it is to see you Sorry things are not as good as they could be but really hope you get through the assessment and they get you on something that will help.

Keep in touch with us Kay. ((( ))) and a hope Cris xx

topgirl

Thanks folks for all your views and kind words...

Feet issue on DAS scores????..Cant get my head round that at all :roll:
My feet were the first joints affected....
I felt like a junkie as soon as i got out..popping pills no end... :green

Cris...i think we used to chat on here a lot???....Once i started work again my spare time was more or less taken...BUT i intend to be on here alot more to support people ( if i can..)
xxx