Active disease but no treatment as I don't qualify for biologics. Have to wait for damage!

So I saw the consultant today. I was diagnosed 7 months ago but have been unable to tolerate four dmards. Hydroxycholquinine. Methotrexate, sulfasalizine and leflunomide. The consultant is happy the level of side effects were such that taking the drugs was not an option.

The next step would be biologics however it seems my Hospital which I feel like naming and shaming operates a severe qualification process. This includes having inflammation and preferably erosion in at least 90% of joints scored on DAS plus a high CRP marker. No matter what swelling I have my inflammatory markers are always normal. My feet are also much worse than my hands but don't contribute to the score. The consultant had great fun pushing the fluid around in my knee and saying look at that but my knees won't count.

The upshot of this - although I have active disease in numerous joints I will now receive no treatment at all as my options have been exhausted. I have been put on a waiting list for an ultrasound currently four month wait in the hope this might show the inflammation clearly present.

Even if I do then reach the previous 5.1 a funding letter will still have to be written.

The consultant says ideally by the time I get a scan my joints will be damaged and I qualify.

So I will let that one sink in. Because "I have failed on four dmards" I now have no option but to let my disease progress until there is irreparable damage to my joints at which point I might qualify for another drug.

So much for the big fuss about early diagnosis. I might as well have not bothered and waited another year until they have to wheel me in there.

In other news the consultant also thinks I have fibromyalgia

15 Replies

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  • My DAS score is normally about 4.9

  • Sounds terrible😕The only thing I can recommend and that you have control over yourself is to try a elimination diet. It has made a big defference for many, me included. Are you by the way seronegative? Hope you will find something soon that will help. All the best. Simba

  • Been to see the research team I've been randomly chosen for the intensive treatment arm.

    Discussed everything with me. Decided to stop suphasalazine and start leflunoomide.

    Given a steroid injection

    My DAS score today 5.02

    So close but not close enough

    I can only sympathise with you. I think the NHS is sinking fast as no money to spend on people like us

  • What a nightmare! Talk about inhuman....

    Two thoughts. First, like Matilda 1922 above ask if there are any trials around. Second ask your GP if you can be referred to a rheumatologist in a different health trust area?

    In the meantime I think maybe a letter to MP, local paper, PALs service at your hospital etc etc might be worth doing -if only to express your rage. Sometimes those who shout loudest do get heard.

  • My first thought was you are joking but sadly I know that you're not. Well then, next step, back to your GP to discuss changing to another hospital, it doesn't have to be in your area. You should not have to wait to such a high percentage of erosion before being even considered for biologics, that's just not an option. The DMARDs have failed you, you have not failed please remember that.

    I can't believe that other patients under your Rheumys care have had to go through what he's told you are necessary for qualifying, it's inhumane not to say more costly in the long run as joint erosion results in joint replacement! One of the reasons for needing biologics is to avoid joint erosion for goodness sake! I do hope you asked to be copied in on the report he'll now be writing to your GP & trust he'll be laying down the requirements as he told you.

  • I can only add that I am so sorry to read this and hope that the advise the ladies above have given helps.

    I'm baffled that quite a lot of research into early diagnosis and treatment comes out of the UK and yet too often their patients are left in waiting. Triple DMARD therapy can be good and quite effective but only if it works. As NMH mentioned, in the long run the NHS won't be saving any more money.

    I really hope it all gets sorted for you and you can go to a different hospital.

  • I'm sorry that you are suffering like this and shocked that people can be treated this way. I had no idea.

    Have you looked into LDN? Side effects are low and are usually transient and for some people it has prevented disease progression.

    Or Minocycline? Admittedly, I know less about this because I have no experience of it.

    I can believe that the NHS is in dire straits. Last week I thought I'd accidentally been given the wrong strength capsaicin cream by our local pharmacy. When I checked into it, a GP had overridden the rheumatologist's prescription and the reason for that, the receptionist said, was because it was cheaper. And it was out of even the GP's hands.

  • At first when I read your blog, I thought that was standard practice on the NHS. However, you go on to say there is a four-month wait for an ultrasound. This is absolute rubbish. The GP could get the ultrasound done for you tomorrow and so could the hospital. You can actually get a walk in ultrasound for £99. It is really cheap for the NHS and there are NO WAITING LISTS.

    I feel they are trying it on and, yes, I would name and shame the hospital and the consultant. I know the NHS is slow but they are not slow once you have been seen and have marked disease. My problem was the GP who caused an inordinate delay. Even then the GP surgery wanted me to go to the local hospital (St George's, Tooting) which I refused.

    I went to a hospital in Central London. There are several good ones and you won't be treated like that. I am sorry to say but you have a legal case against them if they don't get a move on and you develop joint damage - because they have the means and the time to avoid it. It is negligence.

  • So why aren't you on steroids, or given one of the many other DMARDS available? That seems very strange and extremely painful for you. You could get a second opinion. I tired nearly all the DMARDS, bar one, and then qualified for biologics so I don't see why they won't give you a go on another one. I would ask them, don't wait be a squeaky wheel, that is just terrible medical support.

  • I've tried the four they are allowed to prescribe and I have had to come off the steroids as they weren't allowed to prescribe me a high enough dose to make a difference to the swelling.

  • Definitely you need a referral to a new rheumy. That is criminal that they just say go away and come back when you are crippled. I am so sorry that you are having deal with this. It make life that much harder. You are a consumer, you go on and consume until you get the right treatment. We wouldn't accept a builder who did half a job, so we shouldn't accept a Dr who doesn't either.

  • Hi it's not a normal ultrasound. It's one that has to be done by a specifically trained consultant with the rheumatology software downloaded on the machine.

    Two year ago I had suspected ovairian cancer the same hospital told me it would be 5 months before an ultrasound could be done. Reason: well if the ultrasound shows suspected tumour you have to be seen within two weeks and they couldn't make that target. There were no targets for waiting times for ultrasounds. A management decision to let patients die rather than the hospital be fined. I had to pay £300 to go private

  • My ultrasound in the shoulder was done by a consultant radiologist and I had it immediately. I was given a guided injection at the same time. There is no waiting list. I also had an ultrasound done on my hands and feet and several definite signs of RA were identified. I think they are trying it on.

  • I work in this Heath authority so I know seeking a second opinion is pointless because it's not the consultant saying I can't have them it's the authority. So even if I had a second opinion that agrees with my consultant that I needed biologics I still wouldn't get them because the funding still comes from your own local CCG who have set the qualifying rules in their area

  • I am finding this difficult to read. I currently live in France, having moved from Scotland in 2003 where I was diagnosed in 2000. Immediately put on sulphasalizine and everytime a med stopped working or I couldn't tolerate or had allergic reaction was put on a different med. So far I have been on methoxtrate, folic acid, leflunomide, Enbrel, Abtacept (Orencia), Tocilizumab (RoActemra), and currently Rituximab (Mabthera). Also been put on prednisol (cortisone) several times, but apart from putting weight on, didn't seem to have any effect, so I now try to avoid at all cost, and at each change it was the Rheumatologist that changed the treatment without any question about time or money. I was hoping to return to the UK this year but all of the above makes me wonder if it would be a good decision. Good health is the most important thing anyone can wish for, what is going on in the UK?

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