How long should I wait for anti TNF treatment ?

[Michelle1703]

I have been suffering with some sort of inflammatory RA for 18 months since leaving a very active job and leading a very busy lifestyle. This has slowed me down completely and have been in pain particularly both wrists and knees. I was on steroids for a year and came off them in November when I had an op on one of my wrists that hasn't helped at all. I saw my consultant 6 weeks ago who agreed the combination drugs of MTX, Sulphasalazine and hydroxichloroquine together with painkillers were not working. She scored me any told me I needed anti TNF treatment which I agreed to. I have waited 6 weeks and now been told it could be 3 to 6 months. Any views on this please as I am at the end of my tether and considering hitting the steroids again to get some pain relief but don't really want to start that cycle again. Any advice would be welcomed.

[allanah]

Yes unfortunately it takes time for them to apply and get funding for the drug! However I would be tempted to ring your Rheumy hotline and ask about the progress as when it happened to me they said oh yes its just been passed come in tomorrow!! So it night be good to give them a nudge as things do happen ! But there will be at least three month again. Whilst you wait on the anti tnf working so you may need a steroid to tide you over, so I would mention you pain when you asking about the anti tnf treatment. Good luck xx

[Michelle1703 in reply to allanah]

Thank you for your prompt advice I will call them again today.

[Hidden]

There appears to be such a variation as to when Anti TNF treatment starts - I too had to wait some considerable time for my first trail, might I just say at this point don't expect it to be a magic solution to the problem... Sorry to be the bearer of some negative news, I know many people have brilliant results and it is the greatest thing for them, I was not so lucky. I have tried 2 TNF's and now WAITING.. for the 3rd, got my next appointment for further discussions on 8th May, this has been going on since last September, although I should point out I had some significant health problems which held matters up.

I do agree with you about trying to avoid the steroid route again, I have a real adversion to steroids unless I cannot avoid them - they thin your skin, blow you up and cause many other horrid side effects which are not nice, yes they reduce the RA pain, but...

Have you asked why such a delay? If not, I would take the bull by the horns and call the hospital and if you are not able to speak to the Consultant speak to the Specialist Nurse and explain how you are struggling and ask them to explain just what this delay is - it might be that it has to go before a PCT panel as these drugs, as with all drugs are regulated by NICE and you may have to meet certain criteria and the hospital have to get permission to prescribe - but you need this to be explained. It's your health, you have a right to know. We do need to take charge - not always easy, we do so often tend to just go along with what the doctors say... but we have to live with this daily pain!

[Michelle1703 in reply to Hidden]

Thank you for this and I am not expecting a miracle just some relief I will call them and chase up.

[allanah]

No Michelle, keep your fingers crossed if you can! Plenty of people get miricles from anti tnf's, my best friend being one!! Here's hoping xx

[Hidden]

I'm sorry to hear that things are dragging on like this Michelle. I've been told that if my current combination of DMARDs hasn't worked by next appointment - June 27th - then anti-tnfs are the next step. The Rheumy nurse made it sound so simple & I'm sure she'd like it to be, but I was already aware from reading posts here that there's invariably some delay.

My experience of Rheumatology services to date is that phone calls and chasing are essential no matter how good individual practitioners etc. seem to be. At the very least I'd imagine it might help to know what stage the application is at. Limbo is not a good place. I hope that the anti-tnf is approved for you very soon & that it works well. I'd be very interested to know what happens.

Luce x

[Hidden]

started this journey mid january no end in site til at least may!!

[sylvi]

I too am waiting news on anti-tnfs, don't suppose i will be getting them before august,anything before that will be a miracle in my book.Sorry but thats just the way the nhs works.xxx

[lorann in reply to sylvi]

My gosh girls, what IS that much delay for? Sylvie, I know how long you have already waited, I would be wherever is necessary and jump up and down on somebody's desk, till they gave me a sensible reason for such a long wait!!

Do any of you know of any doctors who petition the Pharmaceutical companys, to provide "samples" without cost, for a desperately ill patient who has already been through the gamit of all the DMARDs, etc, and should not wait any longer and allow damage to happen? Maybe you could ask your own Rheumys about this? Loret xxx

[miss]

Hi sorry to say nhs is wonderful when working. As above you can't rush these things!!!!!!!!!!x

[Neonkitty]

Hi Michelle,

Sorry about your meds. Hugs to you. As you have taken three DMARDS (and all together) it seems to indicate your RA has not responded well to the RA.

Like Summer I am awaiting the start of a biologic - Enbrel - but I am quite a bit further down the line of getting to take it. I hope Summer gets progress soon. I have had during the past two months since I agreed to take a biologic - a screening biologic meeting with my Rheumy/biologic nurse which involved urine sample, weight, blood pressure, full sweep of blood tests including ones for antibodies and Hepatitis C, discussion about anti TNFs, and demos of click pens and given a lot of lkterature about three anti TNFs I could choose from (Enbrel, Humira and Simponi). Then I had to go away and decide which one I wanted (I have chosen Enbrel) and also undertake the routine screening Mantoux skin test for latent TB which involves a skin scratch and a follow up to see if it is alright. Also a chest xray to check all ok there. I also had a DX bone scan for osteoporosis but that was partly routine since I have had a lot of steroids.

I have had to hold things up a couple of weeks whilst I could get in at the dentist amongst all this screening and blood tests and consultant visit also for over active thyroid check ups and an appointment for my mum too .... I have been there so much lately .... So I finally got to have my root canal done yesterday as the dentist was on holiday last week. I was expecting to have to be told I needed antibiotics so that is why I couldn't give the Rheumy Nurse the go ahead three weeks ago when I have her my biologic choice, to set a date to commence Enbrel although I did say it should be mid April even if I took a week of antibiotics after my root canal. I wish I had known I didn't need antibiotics for the damn tooth but I would have needed to be psychic. (Pointless to start Enbrel then come off it for two seeks and re start if antibiotics had been needed.)

Will continue in a mo as my iPad is not charging and I could lose my message!!

[Neonkitty]

Hi again, Michelle, so I am telling you my experience as it is not necessarily a fast one given the things to be done test wise and administrative procedures, too.

Also, before I forget, it is usually a DAS score test which starts off your eligibility as part of the assessment of your pain and visible inflammation (upper limbs/hands/fingers) and ESR/CRP inflammation tests which "qualifies" you for an anti TNF/biologic drug. You have to score a certain amount (is it over 6.1? Reason I can't recall is that I have been told in the last year or so ... Oh yours is way over .... You qualify ... And not told the score! Just that it is high.

I had already got Health Trust approval for a biologic as my Consultant did that early January well in advance of me saying yes to taking one. She has been pressing me for a long while now. I am waiting to hear my Enbrel start day now, since I gave the Rheumy Nurse's secretary the confirmation today, that I am ready ASAP, and that she has registered me with the health care at home company who come out to do the early injections etc. Unfortunately, I have another delay as she is on holiday till Monday. Anyhow it is getting closer.

Michelle, have you asked them when they will do a DAS assessment? (I think they may need two of these to confirm you qualify, with a gap inbetween to monitor bloods etc. They didn't DAS me since last year, as my consultant said she had all the evidence she needed looking at me in the steroid injection clinic in January and at my blood tests too. Poor lady had to lift me up and down off the chair my legs had seized so much.) I WOULD chase them up asking when you can be seen for assessment for a biologic. Don't leave it for them to contact you. Then may think you are trundling along OK. When you are not.

So I think without delays of any other things you may need to do health wise prior to a biologic, that it is realistic to say 6-8 weeks from second DAS to choosing the med and official admin and screening tests to actual biologic taking! Some people might have been quicker and some longer. I hope it is not too long a wait for you. Good luck.

Julie xx

[Michelle1703 in reply to Neonkitty]

Julie. Thank you so much for explaining this and sorry to hear that you are experiencing the same problems. I had a DAS asst in Feb and was over and been waiting since then. I have spoken to the hospital twice this week and they promised I would be contacted yesterday. No call. I will be chasing them up again today it is just not good enough. Take care and thanks again at least I know what's ahead of me.

[Neonkitty]

Sorry, Michelle, first para ... Your RA has not responded well to THEM. Not RA. Apologies.

[Neonkitty]

Hi Michelle, it is such a shame when the admin and breakdown in communication spoils a brilliant rheumatology team. IT has Kwats been so good till now. Sorry you didn't get your call today. I was waiting for one today too to confirm I have been registered and that they got my message to say I am ready .... But nada.

The tests etc the consultant put in place were quite quick but three times staff holidays have held things up and it seems things get left till that person returns.

If being assertive and diligent brands us as nuisances, then what can we do? I shall leave a message Wednesday when it will be a week since I spoke to an administrator there. I fully understand people need to go on hol but if their system doesn't build in cover then?? We are snookered or some other word that begins with another letter!!

I hope you move quickly through your procedure. Mine has gone well until this last few weeks of communication issues.

Good luck Michelle and let us know if you got a call from them.

Julie xx

[Neonkitty]

Kwats ... Ignore ! Sorry.