DAS 28 test .............update.

[Crusee]

Firstly thank you to each and every one of you who responded to my post yesterday with regards the DAS28 test today. You all provided useful, helpful advice and answers,and good wishes. I think I have responded to you individually but in case I missed anyone I do apologise.

Anyway I think it went very well despite the fact that I turned up looking like a scarecrow and covered in newsprint- long story but that's the last time I do the Daily Mail crossword in the car on the way there!

She tested my joints and with only 1 or 2 exceptions they were all either swollen,hot or tender so I qualified on that part with flying colours.I then had a lot of phials of blood taken and also a chest X-ray so provided they come back showing the levels they are expecting then they will apply for funding for etanercept.

I was given a huge file to bring away which explains about the drug and its side effects etc, along with a cd and dvd so I was maybe thinking she wouldn't have given me those if she wasn't reasonably confident that I would get it.-- but not celebrating just yet just in case.

She also warned me that the funding may take a while to come thru if I qualify as I live in Wales and rheumy in England.

So I should receive results by end of week or next Monday.Fingers crossed.

Thanks again.

Crusee

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[Hidden]

Hi Crusee, I'm glad you got thru your appt and hope the outcome is good for you and you will get to try biological drug. We have chatted before, I am also patient of Dr E G - and I'm going down similar route as yourself to try and get a trial of bios. He tried to add leflunomide to my MTX recently but my BP very high so didn't get to start it as leflunomide can put BP up even higher. My GP is furious that I am struggling so much on just MTX and she's writing to rheumy about it but not sure if it will make any difference.

Hope you hear soon and get on your drug. Which one do you think you will be offered ? Keeping my fingers crossed for you xx

[Crusee in reply to Hidden]

Hi Hidden

Yes we have chatted before.

I did t see Mr E-G today he is on leave I saw the rheumy nurse Sister S B.

I find her excellent,she is approachable and switched on.As I think I have mentioned to you I have problems with my kidneys so they have suggested etanercept for me and do it in 2 doses per week of 25 mg each rather than 1 Jab of 50 mg.-apparently not so strenuous for my kidneys and it stretches out the dose more equally over the week,but that is subject to change.this is assuming that I qualify with the bloods and X-ray and funding is agreed.

I hope you can get your meds sorted soon too.I tried lefluminide a few years ago and didn't get on with it so it was stopped.

My GP is keen to get me off steroids as they can be harmful to my diabetes but this last week or so I have down off 10 mg daily to zero and boy do I know it.?

I am hoping to have confirmation if I qualify by the end of the week or Monday but the funding agreement will take longer as its England rheumy and Wales patient.

Good old politics kicking in again.

Let's hope we can both be sorted fairly quickly and make for a more pain free life.

Take care,stay well.

Crusee

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[nomoreheels]

That they gave you an info pack sounds promising. I really hope enteracept is the one for you, it's good they're suggesting splitting the dose to keep your kidneys happy. Do let us know once you know. x

[Crusee in reply to nomoreheels]

Well the info pack was behind my reasoning as well. I just hope I am not attaching myself to false hopes and be sorely disappointed but will have to wait and see.

Thanks for your advice and as soon as I have some news I will let you know.

Have a good nights rest.

Crusee

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[Jacki08]

That sounds positive -- do you not have to wait for another high DAS score -- if not then that's brill . Hope you got a steroid injection. Fingers crossed for the funding 😊

[Crusee in reply to Jacki08]

Hi Jacki08

Apparently no I don't have to wait for a second test it can be done on one she told me yesterday so I am very pleased about that ,as I Thought I may have to lay off my meds for a further 6 weeks.

I didn't have a steroid jab as I am on oral steroids .I have to wean myself off those now anyway as they are affecting another medical condition,but I have taken some this morning as I gave gone from 10mg daily to zero so it's a big of a wrench.

Assuming bloods and X-rays ok,then they will apply for funding so yes indeed fingers crossed.

Thank you.

Crusee

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[AgedCrone]

So glad it all went well & you feel positive about the outcome......with a bit of luck you'll hear something pretty soon.

Did you ask if you can go back on your meds whilst you waiting?

AC

[Crusee in reply to AgedCrone]

Yes I did and I took them this morning- feel almost human today-- lol.

Hoping for some news soon and thank you.

Crusee

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[Mandalou]

Hi Crusee, even when you get the OK for Etanercept ( maybe Benepali now rather than Enbrel?)

It takes a fair while for it to be started, my Rheumy put me back on Prednisalone at a very low dose to keep me stable while I was waiting for the OK plus all the TB screening and a nurse visit and drug delivery then I weaned off it over a month long period.

Enbrel for me kicked in much much faster than I expected so I really wish you success and swift remission.

The raised red lumps you get after the first few injections disappeared for me after roughly the fourth or fifth jab.

Mx

[Crusee in reply to Mandalou]

Thank you Mandalou for your reply.

The nurse discussed this with me yesterday because if my kidneys being in poor shape.She said,it would be enbrel they would use rather than benepali as it less risky for my kidneys,and easier to have two small doses a week rather than one big dose so it looks like that's the way it will go assuming all ok with bloods and X-rays.

I have also been warned the funding could take,a while as rheumy in England patient in Wales - it happens every time.

I went thru a similar scenario when I was doing the mtx jabs with health at home coming out etc so not expecting it to happen before new year anyway..

She mentioned redness on the injection site so thanks for the info.

I am not expecting remission with this drug as I was also told yesterday because of several other conditions I have it may not be as effective as I would hope because it all depends on how my other conditions impact on this, but as far as I am concerned any improvement will be welcome.

Thank you for responding Mandalou.

Crusee

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[Mandalou in reply to Crusee]

Hi Crusee , I believe Benepali only comes in the larger 50 dose at the moment as its so new so due to your renal problems this probably be too much for you in one go as you explain.

Good luck with the Enbrel, it's been really great for me, quite subtle really and zilch side effects after the first few.

Hope funding comes through quickly.

Mx

[Crusee in reply to Mandalou]

Hi Mandalou .

Well I certainly hope hope this will work.Since last November all I have had is steroids,and I really need to move on now.I think I passed the das28 ,as 23 out of 28 joints were active disease.

Chest X-rays camre back bleat.some blood tests- my kidney function st 24 pc and red cell blood count low.athey are awaiting results oh hepatitis,hive and tb but apparently these take a while.TBH if they told me strawberries dipped in air freshener worked I would probably take the,.

Thank you for your reply.

Take care and hope your ok.

Crusee

XC

[gwynedd]

Good luck Crusee,

I hope this works for you, it sounds like their really on the ball and things are moving for you. I have no experience of this drug but from what I have heard it sounds like a positive step for you.

Pob lwc xx

[Crusee in reply to gwynedd]

Diolch gwynedd

I hope it works too.but they have said don't have too high of expectations because I have a number of significant other conditions which could affect how these drugs work on me but hey if I thought camels eggs covered in peanuts would work I Would take them .I am just desperate to try anything that would give me some bit of my old life back.

Thanks for your reply.

Take care

Crusee

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[Hidden]

Good luck Crusee

Going on biologics changed my life in that my RA was so much better. I still get my flares and down days joint-wise but it's not comparable. I wish the same for you.

Take care and keep us updated.

[Crusee in reply to Hidden]

Thank you Hidden .

That's nice of you.

Just hope I get accepted and the funding is agreed.Trying not to get too excited just in case it's a bit premature as I will be sooooo disappointed.

Will let you know how things progress.

Thanks got your reply.

Take care.

Crusee

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[Mandalou]

Ha ha ha! Loving the fantasy concoctions......

Camels eggs covered in peanuts and strawberries dipped in air freshener!

You make me howl laughing Crusee.

All the very best to you

Mx

[Crusee in reply to Mandalou]

What do you mean fantasy concoctions?

I made a twiglet and orange cheesecake for dessert today --- lol!

Crusee

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[Mandalou in reply to Crusee]

Inspired cuisine! He he he

Mx

[Crusee]

Oh I am saving some of my best dishes for our boxing day buffet.- you're welcome to join us.

There's pilchard and banana roulade.

Black pudding and raspberry vol au vents.

Lastly tartare sauce and mango mousse- yummy.

I am only joking of course!

Take care couldnt go,to bed without a bit of silliness.

Crusee

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