Feeling abandoned and pretty low

So saw the consultant last week and because I can't tolerate any of the dmards but don't qualify for biologics I am now being left to my own devices with no treatment. I find this hard when for seven months they've been drilling in to me how lucky I was to be diagnosed early, that I have a serious disease and the aim is to prevent it getting worse by giving me medication. Suddenly it is, sorry we have no optioned left because you don't qualify for the more expensive drugs so forget everything we've told you.

Obviously this has left me feeling very low and abandoned. Then today I called my RA helpline at the hopsital because they were meant to arrange collection of all thr injections and sharps bin still at my house but they hadn't.

The nurse answered the phone and as soon as I gave my name her tone changed. What do you want now...what is it this time.

Whilst the consultant has alwazy been very nice two of the RA nurses have left me in no doubt that they find me tiresome and that to use their term I am their problem patient.

The reason for this.....I have reacted badly to each of the medications they prescribed. Each time this happens I have to call the helpline not because I want to but because that is what I've been told to do. They have tried me on the same drugs several times with the same result which means I have to call them each time. Both of these nurses have made it clear to me they think I should put up with the side effects and I am a nuisance who just won't go away and "suck it up" as far as the side effects are concerned. Yet both my GP and the consultant think the side effects were way too severe for me to continue.

But having been dealt that blow last week that they will now abandon me to my fate the attitude of the nurse today just pushed me over the edge. Needless to say when I told her I wouldn't be receiving any treatment now she perked up a lot and was very cheery as she put the phone down.

I tried calling the NRAS helpline but it's shut....

My boss has now accused me of making things up as the hospital clearly don't think I'm ill enough to warrant any treatment (which is not really the case) and I just wanted time off.

I can't get my head round the fact that 7 months of sheer hell later I am back where I started before I was diagnosed.

Sorry rant over. Apparently you only count if you are a good little patient who responds well to your medication

19 Replies

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  • If I were in your situation I would try an antiinflammatory diet, AIP,Paddison or Wahls protocol. I would also look into LDN ldnresearchtrust.org. and Roadback Foundation for antibiotic protocol. There is an abundance of anecdotal evidence of their efficacy. At least this way you would not have to have the feeling of being in the hands of medical professionals that are not helping you. I can only imagine how bad you feel😢

  • Yes it's an absolute disgrace the way you've been treated, it's bad enough being ill without all this carry on , if the shoe was in the other foot don't think they be so smart if it was me I would report them hope things get better xxx

  • Dear Xanxan,

    Unfortunately your situation is not uncommon and NRAS has campaigned for the DAS score to be lowered so Biologics can be used for moderate to severe RA, and not just for those who have a DAS score of over 5.1. There are many more medications in the pipeline (including JAK inhibitors, which are not Biologics). Although licenced in the UK, it hasn't yet been decided where these will fit into treatment pathway but, due to their lower cost, they may well be after DMARDS and before Biologics. The launch of new Biosimilars will hopefully also lead to Biologic medications being made more accessible to patients.

    I'm sorry that we've had to close the NRAS Helpline today. This happens very rarely but sometimes is is necessary for staff training so we can ensure we're giving people the best information. If you didn't leave your name and number on the answerphone, please email helpline@nras.org.uk and someone from the team should be able to call you back tomorrow and I'm sure they will be able to suggest some options for you.

    Kind regards,

    Emma-NRAS

  • Can you tell us when the patents on biologics is due to expire? They should be much cheaper then.

  • Hi DelicateInput,

    The Biosimilars which are currently available can be found on our website (towards the bottom of the page) nras.org.uk/getting-establi...

    Subject to change but the expected Biosimilar launches of other medications for RA are as follows:

    Rituxan/Rituximab - 2017

    Humira/Adalimumab - 2018

    Orencia/Abatacept - 2021

    Actemra/Tocilizumab - 2021

    If you have any other questions about Biosimilars, do give our Helpline team a call.

    Kind regards

    Emma-NRAS

  • Thanks a lot. I can't help feeling that these biologic drugs are going to have side effects as well.

  • How many DMARDS have you tried ? as most don't work quickly and if its only been 7 months it can take 4 months for one to work so it might be that perhaps you've not been given some advice about being patient. This is really bad but nearlly all do have side effects but as the body gets used to them often they do go. That said I do hope you do get some help and it might be worth asking for another opinion.

  • Side effects were too severe. I was hospitalised on all four

  • Which four?

  • That sucks! Are you at least going to get to see the consultant from time to time to monitor how you are doing? And have steroid injections if needed to calm things down.

    My other thought is whether you have just be tried on the main 4 drugs - MTX, Lef, Hydroxy & Sulpha. There are others, less used now but I've known a couple of people on here get on well with gold. Here's a link to the list

    arthritisresearchuk.org/art...

  • Thanks for the link. I've had two steroid injection with no effect and they are taking me off steroid tablets because they had little effect and they want me to get as bad as I can. Though since I've been off the dmards I feel much better. I am just back to how I was before my diagnosis. In pain but not suffering the debilitating side effects of the drugs

  • Were the injections ultrasound guided? If, not there is a good chance they won't work.

  • I keep comming back to Jointstat. It is a new test created by a life science company in Vancouver. Well Canada , as there are five locations. This tests a protein 14.3.3.3n which is more sensitive than either CCP or RF. it can also be used to test the effectiveness of the treatment protocol, as levels do respond to treatment. I do know you need to pay for test yourself but it is not that expensive. Here it is seventy dollars. The point however, is for those who are seronegative it provides the proof needed by insurance companies or in your government bodies to approve funding for Biologics or Biosimilars.

    I do not share in your frustration in regard to diagnosis. I am off the charts on all markers. Ciclyc Citrullinated Peptide antibody is 300. Anything over 250 ensures very severe outcome. My problem is collecting my Critical Illness insurance. It is a plan I pay for privately. The problem is the many labels I have accumulated due not qualify. I have no doubt that it is simply a matter of time but this is the only reason I continue this testing.

    I booked an appointment for bilateral hip X-rays last night. I sat waiting for fifty five minutes. I got dressed and left. I have decided I am done. No more testing and no more drugs, at least until June. In June I will take a second course of Rituxan. The reason being , I want my insurance companies to pay the 12,000. And the side effects have been very mild so far.

    Sorry for going off track. Again, my recommendation is get a different test. If it is not RD at least you can begin to look for a cause. Best of luck. My heart goes out to you. I can certainly understand your frustration.

  • Hi Damaged. Sorry to hear you are having such a tough time. I'm seropositive for anti ccp so they have no doubt I have RA. But here you have to be severe before you can get biologics.

  • Wow. Just wow. You absolutely count and most definitely matter.

    Maybe, as helix mentioned you could try gold or another older med?

    if I were you I would get the hospital to write a letter to your boss letting them know that you indeed have RA as proof from your anti CCP test but that the NHS hasn't found a better way to help those who fall though the cracks simply because of severe side effects from the first line meds and that they hope to get up to speed on making the qualifications a little easier for patients like you to get Biologics or Biosimilars. In the mean time your absence was warranted.

    I really do hope something can get sorted out for you.

  • Have you asked your GP to refer you to a different rheumatologist? It seems the team who have been treating you haven't been as professional & helpful as most teams are.

    It's worth asking ......as unfortunately RA doesn't just go away on its own,

  • I can relate to what you are saying about the DMARDs I have the same issue. The only one out of the 10 or so I didn't get to try was gold injections. I was lucky enough to be able to get biologics but when I had bad reactions I was told that that was it and I was left to my own devices for nearly a year. I had to argue a lot to get back on something, including refusing to accept a diagnosis of fibromyalgia just so I would go away quietly. Don't give up.

    I am surprised they have not even offered your steroids to at least keep some of the inflammation at bay. Can you get a second opinion? This is inhuman. Go to your MP, ect and make a noise. Get a letter form the consultant explaining to your work what it is you have and how you are at the stage you are now. I also wonder if they are waiting for you to go downhill so they can refer you for biologics.

    Don't give up, I know it is hard to keep fighting when you feel so gutted, but take this time to grieve a bit then come back out fighting. You can do it

  • Hi Xanxan... I feel absolutely terrible for you. But, as others have said, there are options. There are herbal and essential oil remedies. There are diets - not just Paddison, but keto (low carb, high fat). I am so sorry that they treated you that way. Take a look around the boards here: search under alternative medicines and see what all you can do. There are also yoga and tai chi that will gently help to exercise your bones and muscles, but it is hard to make yourself do them when you hurt. We understand. Rant away, but take a walkabout here too.. Gentle hugs

  • It makes me sad and angry to read your story. No-one should be treated like this or made to feel this way. Have they suggested at least a low dose (up to 5-7.5 mg/day) of prednisolone (steroid) if you are having a bad reaction to the DMARDs? What is your DAS score? As, if you are not on any treatment, your DAS score is likely to go up and once it's 5.1 or more you are eligible for a biosimilar/biologic. I'm sorry our helpline was closed, we do close on bank holidays I'm afraid but we are open again tomorrow morning if you would like to call. Not being on any treatment at all is not a sustainable position unless your RA is very mild indeed as it is a progressive disease and whilst a healthy lifestyle and balanced diet are very important and help, alone they will not in the long term control the disease or prevent joint erosion and bone damage. You can always ask your GP to refer you to another consultant in another hospital within your CCG area.

    Best wishes

    Ailsa

    (NRAS CEO)

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