How long till Biological tests. : I got the impression... - NRAS

NRAS
26,211 members30,045 posts

How long till Biological tests.

I got the impression form my Rheummy Doc it was only a matter of days for the tests to start when he asked me for my Mobile number, Has anyone waited a long time on these tests starting I keep telling them I am really struggling with my RA but still no reply. matt

17 Replies
oldestnewest

Had my tests done on day they suggested biologics then Infusion 4 weeks later. Good luck.

Reply

Thank You Marm waiting it is,matt

Reply

Maybe it's more complicated with your lung problems. I had all the tests/xrays done on the day the decision was made, just had to wait a week to know which one I would get, as I went into a trial, and a computer made the choice. After that I waited a couple of weeks for the appointment for the infusion....the computer chose rituximab.

Hope you hear something positive soon. M x

1 like
Reply

Thank You a month seems to be an average time ah well. matt

Reply

Oh Matt, it must be so frustrating it being within reach but just not quite there yet especially when you're in so much need. I agree with hatshepsut, I'm wondering if it's because there are two teams in cahoots & they need to meet to discuss treatment plans it not being quite so straightforward? I don't have much of a clue about biologics, just what I read here as fortunately I've not needed to go there but I've an idea how multiple Specialists all need to be in the loop regarding treatments & how it's rarely immediate. I do hope your wait isn't for too much longer.

Reply

Thank You It;s just a case of waiting. matt

Reply

Matt, what tests are these? I had to have blood test before going on Ritiximab but they were done straight away after my rheumy appointment and the results were through within a week. When I went on biologics again I had X-ray, bloods, but that was all done after the appointment too. This was all at Western General, Edinburgh. I think that my current rheumy chases things up very efficiently.

I hope you get somewhere quickly now,

C

Reply

Thanks cathie. I had bloods taken at my Rheummy appoint and I have been referred to the wgh so it's just a case of waiting. matt

Reply

Who are you going to see there? Message me if you can

1 like
Reply

Is that something you could ask the Rheumatology Nurse? Also, I think some areas have a specific biologics clinic that deals with people going onto biologics, so it may be that the Rheumatologist has had to write a referral to get the tests started. If you don't have a rheumatology nurse, then I'd maybe just phone the rheumatology clinic or department and ask what happens next, and who will be contacting you.

Reply

Thank You it's just a case of waiting but I have told everyone involved I am going through a really torrid time. matt

Reply

You have my sympathy Matt. Have you had steroids recently? Maybe a depo of kenalog or depomedrone would tide you over and ease the pain a bit? My gp will give me it if I'm desperate.

Take care

Kikideelili x

Reply

Hi KiKi I am already over the limit with my Steroids my GP and Rheummy Doc keep on at me but I have told them if they cannot give me something to control the pain then it's my decision to try and help myself. matt

Reply

Your in a very difficult situation Matt you have my sympathy. I'm presuming you have contacted the wgh and chased up your date to get you in for Biologics? Next step would be to contact the Customer Relations and Feedback Team

Tel: 0131 536 3370

Email: craft@nhslothian.scot.nhs.uk

I live in England and we have patient advise Liason service. I contacted them when my son was ill off school for a month and he was given an appointment for 6 weeks time. I phoned pals and said this was too long for a 9 year to suffer and they went away and investigated. Next I get a phone cal to say he can be seen in 2/3 weeks!

It may be Matt that your chest doctor needs to speak with your rheumy but a call or email to CRAFT certainly won't do any harm.

Take care kikideelili x

Reply

I was recommended for Biologics in November by the Rheumy, had to wait until December to see the nurse, she told me it would be 6-8 weeks. The prescription was given to Healthcare at Home last Monday & delivery is planned for Saturday but I've still got to wait for the nurse to contact me to arrange a visit to show me how to do it. So it's taken sometime for me & because of another health investigation I have been unable to have any steroids! Hope you get your quicker than me!

Reply

Oh no Pauline

That's a long wait. I hope the nurse is able to come out to you very soon. And I hope healthcare at home is able to get to you on sat ok with all the bad weather.

KiKi x

Reply

For me and Rituximab, it was fairly quick ... a month .. as had to also stop Humira for a month prior to Rituxi start, and find an appointment for the whole day in the infusions clinic. If you need to have any tests such as TB or x-ray they can take a while to arrange/assess these and also a click pen/med (anti-TNF) needs to be delivered/demo-ed from Healthcare at Home etc also takes organising with the HaH nurse etc. Some hospitals are more efficient than others ;-) I had a bad experience waiting to start my Enbrel and a quick one for Humira and for Rituxi. (If you haven't had an anti-TNF med, they don't normally put you on an infusion without trying two anti-TNF's first.) I also had to have to have my B cells tested prior to Rituxi commencement which took two weeks to go off to a bigger hospital for me and results return. This is a standard test for all those people starting on B cell depleting meds. Thankfully it all came together efficiently and on time. I would say as others have done .. think a month ... for all the red tape of rheumy getting approval and biologic counselling (meeting with the biologics nurse to discuss and receive an info pack/DVD) and also any tests and then finally meds delivery/logistics. Once you know the ball is rolling you start to feel a little better in yourself and certainly relieved. Hope you are soon on something to control your problems. Take care. NK x

Reply

You may also like...