Feel like I have completely failed now and am so low

So I've fought and fought to get treatment after failing on four dmards. I complained - I saw the consultant - he promised something would be done.

The result is nothing is happening I've deteriorated in terms of pain and general unwellness - the fatigue and flu like symptoms are now overwhelming but the hospital say they will only treat when they see erosion and they can't see it. They accept I have RA, that inflammation has been seen and I have fluid on my knees but it isn't enough to warrant any treatment.

I returned to work and also went on an induction day for the police on Monday. By Monday evening I could barely move. Tonight my GP has put me on morphine patches. This is the end of my volunteer role. I have to prove I have a proper treatment plan in place and my health will improve. I can't do this thanks to the Hospital who say I need to go away and put up with it until I deteriorate enough to qualify for treatment but by that time I will have already lost my job. I don't know what to do anymore.

I've had to accept I'm not well enough to do my volunteer job or my college course and really I'm not well enough to do my day job but it was my volunteer job I was desperate to keep. The frustration is all of this is because my hospital believes the only element of RA that warrants intervention is erosion. Surely this can't be right?

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  • Well you would have thought that the common sense approach would be that they want to treat you before erosion occurs. But sadly this isn't always the case in these financially tight times. No wonder so many end up turning to the state for support. It is a dire situation to be in.

    Are you seronegative do you know? This makes a big difference to how aggressively they treat.

    But on the other hand, I was in the same situation as you - only the inflammation was all in my blood rather than joints. I felt that being non erosive as my rheum had described me, was a nonsense. Especially bearing in mind that I still had so many systemic symptoms and signs.

    I relocated and was investigated again from scratch by a new hospital - who changed my diagnosis from RA to Sjögren's on the strength of a positive ANA and lip biopsy. The rheum who rediagnosed me explained that Sjögren's can present exactly like RA - but is non erosive of joints. It's much more likely to cause neurological problems though and this is the direction mine has gone in.

    Unfortunately there are few treatment options for these systemic symptoms of Sjögren's - although I am on the highest dose of a 5th DMARD called Mycophenolate - which seems to have helped with the joint pain a lot but not really with the neuro symptoms. But by the time I was diagnosed I had been taken off all meds for a year and sustained permanent nerve damage.

    I do recall asking an eminent rheumatologist what he thought about non erosive RA and he replied that he didn't actually think such a thing existed and if he were my doctor he would be looking to Lupus or Sjögren's instead.

  • That's really interesting. They are saying I'm anti-ccp positive non erosive.

    I have excruciating pain in my knees and elbows and some fingers. Flu like symptoms. A sore tongue, extreme fatigue, fluid in my knees and thumbs, headaches and overactive bladder.

  • Anti-CCP positive is the more specific RA marker and the main thing that should ensure further treatment I would have thought? What a worry for you. Horrible to need erosive damage to get back onto treatment. Have you asked NRAS helpline at all?

    Your symptoms could apply to any connective tissue disease.

  • Did you contact the NRAS Helpline to discuss your situation with them? Did they not have any guidance for you?

  • I'm not a Dr but isn't the next step biologics if DMARDs don't work?

  • Yes it is you are right - but only if the DAS28 score is high enough. nras.org.uk/the-das28-score

  • Am I allowed to say damn the DAS?!! 😖

  • Or just DAMN28?

  • Yup! Twitchy. It's not an ideal tool I feel to judge. One rheumy nurse in the past did a DAS to see if I could have a steroid shot and decided no as he couldn't see enough inflammation elsewhere despite raging red knuckles. I was furious and let him know. Then on the flip side another nurse said .. You aren't quite 28 but I'll adjust it! So .......

  • I know. It doesn't apply to me anymore but I can still sympathise. I'm just told there's nothing more whatsoever they can do for me now and this is a bit scary. I guess at least with RA there are many more options - if only some areas weren't so staggeringly inhumane about using them? X

  • I know you have been very thorough investigating everything and I know it's been mega frustrating. How are you feeling at the mo? When they say nothing more do they mean they are baffled as to what to do as they have given you tests and procedures, etc and the meds that should work? I do remember you going for your investigations last year. xx

  • No it's not that they haven't found anything or that they doubt I have active disease. It's just that my disease (Sjögren's - confirmed by extremely positive lip biopsy and high ANA plus clear cut Sicca) is considered to be untreatable by my doctors.

    They know what's wrong but there are no treatments for my form of it that I haven't already tried and failed. Unlike RA there are no anti TNFs or Biologics that have been found to work - and only those with seropositive (anti Ro & La) and lymphatic involvement meet the criteria for Rituximab.

    So I'm basically on the highest dose of the last immunesuppresant available to me for what they are calling primary Sjögren's. In US the John Hopkins use IViG infusions to good effect for people like me. And the BSR guidelines 2017 on Sjögren's also list IViG as a treatment to consider if the neurological symptoms aren't adequately modified by DMARDs. But my medical team say this that I won't meet the criteria unless I have brain involvement or CNS involvement - so if Mycophenolate doesn't stop the progression then i would just have to wait until the damage has been shown to progress to my CNS, organs or brain.

    Rituximab was initially offered but it has since been decided that it wouldn't help - and may worsen my neuropathy.

    My markers are high but I'm told that this is because Sjögren's makes the blood very concentrated so inflammation is 24/7 - hence it's the worse disease for fatigue because the inflammation that causes fatigue is untreatable. So high markers aren't any indication of active disease in Sjögren's - just proof of autoimmunity.

    Hope this explains why I feel such affinity with this post of Helzbells. Although I'm 7 years in now (probably a lifetime- and it's finished off my thyroid already and caused early stage CKD and small vessel disease of the brain) so been fighting my corner for longer. It's very frustrating to be always slipping through the net when you know that there are treatments others in my situation can access and which often work.

  • I do remember a lot of this now Twitchy. I recall you being on meds which were the most effective you could take but I wondered about Rituximab (which I have) but if you have neuropathy issues and it is felt you could be worse on it then I'm sorry there aren't any more meds to try. I am sorry too that your thyroid is shot. I have Graves/hyperthyroidism and suffered badly in 2006. Dropped weight to under six stones. Hideous time. It's awful when the immune goes gaga.

  • Well Julie I'm a bit of a bad novel so it's easy enough to forget - I would if I could!

    Basically this kind of Sjögren's is pretty much interchangeable with MS (although there is a very different process underlying each) and so most sufferers are left high and very, very dry. And it's incurable and apparently thought to be unmodifiable. But thankfully it's also relatively rare compared to RA.

    I suppose the only point in me saying this here on Helzbell's post though is because I think/ hope that there are treatments that could potentially help. But increasingly the goals for accessing them are changing - and there is a postcode lottery going on here too which is just very wrong indeed.

  • Don't qualify in my area you have to demonstrate erosion to qualify

  • God this makes me so angry. Its the same with bloods and me nothing shows in them. Keep plugging at the hospital and also complain and ask for a second opinion at another hospital darling. Big hugs from me.xxxx

  • All that Sylvi just said she would be doing I would be too, dear Helen. This is not helping anything for you as you are getting more demoralised. Can you change hospital? I'm sure if this was their daughter/sister etc they would want more for them than to be sent away as no signs of erosion. Can PALS assist in this? I've never used them personally but almost did. I know you don't want to make waves and don't have the energy at the mo, but this isn't right. Gentle hugs. Try do some research to see where the other hospitals are in your area and see if you can ascertain what the rheumatology departments are like. Obviously don't jump ship in despondency without having another consultant/hospital.

    So frustrated for you Helen. xx

  • I did not show positive for rheumatoid for nearly a year. In that time I went so far down the slope I took ages to come back. I was ready to go elsewhere for a different opinion. The hospital gave me anti inflammatories and steroid injections so didn't neglect me but I was in limbo and it is awful.

    Hope you are taking it steady Sylvi. xxxx

  • I think you should contact pals and your local MP, you could also ask your GP to refer you to a different hospital for a second opinion as this does not seem right at all. The whole point of medication is that you don't get erosion and damage. Can your GP surgery do a steroid injection into your knees?

  • I've done all this already it's why I was actually seen by the consultant because of my Pals complaint. It seems there is no treatment for early stage RA if you fail on dmards no matter how ill you are

  • If PALs haven't helped you should contact the parliamentary ombudsman. 🙂

  • Agree completely Ruth with everything you say ! I was going to add MP to my post earlier on Helen's other thread. I think I its so hard when you feel rotten to do all these things but I think you must do as at least you are trying everything and the hospital may have to do something else if you have major support behind you. One should not have to do this and I have a lot of reservations about DAS scores and interpretations .. I had better not say anymore.

  • Poor you, this is really outrageous. And how short-sighted of the hospital. It sounds as if your GP is vaguely supportive. Can he/ she refer you to somewhere or someone else. But I agree with others that the best next step is to ring NRS and seek their advice.

    I do hope that your volunteering work can be postponed, rather than cancelled, but I do understand your frustration. I had to let go of a lot when I first got ill and it hurt, compounding my misery, but it was really the best thing for me .

    I wish you all Good Things.

    Jo

  • I can empathise.

    I am sure that many here can too.

    It's​ not you . It's this retched disease.

    Try to find a way to smile.

    Dave

  • Where are you? If your GP is supportive you could see if a neighbouring hospital has a different attitude. There does seem to be a postcode element to some decisions. There is some element of discretion in consultants decisions, some of the markers they use like dAS are a bit subjective. So really worth pushing for a second opinion. Good luck

  • If your hospital are doing the titrate research study why don't you ask if you can be put forward for this trial.

    There are 2 arms 1. Continue for a year as you are with monthly reviews with GP. 2. Intensive are monthly review by research team under the guidance of a rheumatologist.

    In the intensive you have xrays of feet and hands at the start mid and end of study.

    I'm seropositive and currently undertaking this study on the intensive arm as my DAS score was high but not high enough to start biologics I'm at the 6 months point.

    They have made changes to my current medication but now talking of biologics .

    Hope that something is sorted for you soon the fatigue pain and struggling to work is also getting me down.

    I can't wait for the day when I can retire.

  • How do you find out about the study?

  • It was suggested by my consultant they put me forward for it as didn't know what else to do. Was on 3 DMARDS max dose. Slowly over the last few months were either stopped or swapped for another one.

    I'm currently on MXT 20mg injections weekly and lefluomide 10mg alternate days can't increased either due to the side effects I'm getting. Now waiting to see if the biologic embral will be approved. The only drawback to the study is I may need to stop the biologic at the end.

  • Helzbells Links to current trials including TITRATE mentioned by Matilda_1922

    nras.org.uk/clinical-trials

  • Closed in July sadly :(

  • None of the other trials are suitable/in your locale, Helzbells ?

    I was wondering about STRAP? matura-mrc.whri.qmul.ac.uk

    Might be worth a call - and you have synovitis to be biopsied -recruitment to participation doesn't seem to be hamstrung by DAS or erosion?

  • Yikes, I hope what others above have offered will help you to reach someone who will further investigate whats going on.

    Just a thought. You mention you are anti CCP positive but unfortunately if the number is low it often isn't enough to warrant 'an emergency' if that makes any sense. I believe your number was on the lower side? Your doctors initially did pay attention to your symptoms and positive anti CCP and treated you but you have really crummy, no good, terribly unfortunate bad luck in that you couldn't tolerate any of them. Darn, that's hard.

    In order to reach a rheumatoid arthritis diagnosis when a patient tests positive for anti-CCPs, several other criteria must be met. Doctors will perform a physical examination to look for clear clinical symptoms of rheumatoid arthritis.

    Other blood tests are also performed in conjunction with the anti-CCP test, including testing for rheumatoid factor antibodies and increased inflammation levels. Doctors will also use imaging scans to observe any signs of bone and cartilage deterioration around the affected joints and your imagining tends to baffle them even when it's clear that inflammation is present, but unfortunately there are other things that can cause inflammation and it sounds like they can't figure out what is causing yours....bummer.

    In certain cases, positive anti-CCP tests may also indicate the possibility of other conditions besides rheumatoid arthritis. Anti-CCPs have shown to be present in patients with other connective tissue disorders like SLE (lupus) Despite these rare cases, anti-CCP positivity is highly specific to rheumatoid arthritis. They do say that when you hear hoof beats chances are it's a horse but perhaps you are a Zebra?

    If it is indeed a different auto immune disease it can take years before it truly reveals itself and if you can't tolerate the traditional meds they offer and your clinical symptoms and imaging don't warrant a Biologic then they are tied to a 'wait and see' which is just awful for you.

    Perhaps if you change your plea to say that you accept it may not be RA but rather hint that anti CCP can, albeit rarely, be a sign of another disease maybe they would at least keep investigating and in the mean time offer something else to try?

    Not sure that was any help whatsoever but I did try. I wish you the very best.

    Lucy

  • It's the hospital saying it's definitely RA not me. I asked whether it could be something like lupus or fibromyalgia. They are clear I don't have the symptoms of fibro and they say they don't think it's lupus. They say on several examinations inflammation was seen and they can see arthritic changes in my knees. It's just that it isn't high enough to qualify for biologics. So there are no treatment options. My issue is RA is a systemic disease the flu like symptoms and fatigue are as bad for me as the pain but we seem only to want to treat joint problems not the disease as a whole. They are in effect treating it as though it's OA.

  • I do agree and relate to this point. I have exactly this problem in relation to organ involvement and nerve damage of Sjögren's. I'm told that the small fibre damage of my disease would usually be self limiting therefore I can't try IViG unless it starts to involve my large nerve fibres/ central nervous system. So mine seems to be slowly progressing but I have to wait until nerve conduction studies say that my central nervous system is involved.

    So we have two rheumatic diseases between us with very expensive treatment option(s) for those who have failed DMARDs. But we both have to wait until we have clear cut damage (in my case systemic, in your case joint erosion) before they will let us try big gun meds. It makes no sense at all? Failing the NRAS helpline being able to do much- have you tried Arthritis Research UK's helpline? I feel your health authority or health board must be contravening your human rights here?

  • What I would really recommend is that you ask for copies of all your blood results and clinical letters - so that you can get to know the patterns of your own bloods and see how they match up with how you are feeling. The way they interpret blood results is often far too generic and what may be high for one person may only be marginally elevated for another.

  • My bloods are always normal except for the anti-cop and that's low. I feel awful but it's not reflected in the tests.

  • Sounds like you need to get in touch with PALS the whole idea at early stage is to prevent erosion not wait until it occurs. Also ASK for a steroid injection in your bump. It lasts 3 months and is marvellous it's how I can carry on.

    Hope this helps. Don't despair keep fighting your corner I know it's tough. Xxxxx

  • I'm not sure when you got diagnosed but the flu like symptoms are the thing thats killing me too. Can hardly get out of bed for the achy limbs and constant heavy feeling of exhaustion. How long has this been going on?

  • Hiya diagnosed last September 2016 it started in May that year. I've been told by others that the flu like symptoms are worse in the first couple of years?

  • I feel for you in this situation.I was diagnosed with RA and then Sjrogens five years ago.Rf positive and anti CCP was over 1000.Sulfasalazine and methotrexate were started and I improved joint wise.However I sound hoarse and nasally as though I have a permanent cold. I have found it difficult dealing with fatigue and permanently feel unwell.In January of this year I was diagnosed with pulmonary fibrosis and I believe this is what RA has done to me because my joints are not badly affected. I also now have CKD and recently hypothyroidism.The Rheumatology dept don't seem to have considered any other damage being done because my DAS score was low.

  • It sounds Kafka-esque that RA patients are repeatedly reminded that RA is a systemic disease with extra-articular consequences that can be extensive - yet the decision on treatment is heavily dependent on a DAS score that seems to prioritise the musculoskeletal above other considerations?

  • Exactly my thoughts

  • If they have diagnosed you with Sjogrens as a stand alone disease (and primary v secondary is now thought to be irrelevant) then you are probably suffering more from very active and progressive Sjogren's than from RA just now. If you could get Sjogren's confirmed (either by bloods or lip biopsy) then you would probably meet the criteria for Rituximab. I'm on Mycophenolate partly for early stage CKD due to Sjogren's. It really helps many with Lupus, Vasculitis and Scleroderma and modifies the nephrotic side of systemic diseases. Had to fight tooth and nail to be rediagnosed with Sjogrens though because of this ridiculous UK idea that Sjogren's is always primary or secondary. It's a stand alone systemic disease and you either have it or you don't!

    academic.oup.com/rheumatolo...

  • What a terrible time your having , I also thought if you failed on 4 dmards then Biologics was the next step , that's what happened to me although I was tried on different dmards over 2 years before being put onto Biologics while staying on methetrexate, but I also think it depends which part of the country you live in which is a lottery as we all should be treated the same

  • Rubbish place to be in - feel for you .

    One approach might be to have xrays on an annual basis . Same as you normal bloods but swelling pain etc .meds increased to 20mg metoject .No change . Long story short - had another hand ray this week & hosp saw that joints had been damaged in last 12 months .

    So now being put forward for biologics .

    So does confirm no erosion no escalation in treatment. Fingerscrossed it works but obviously my hands will never go back to what they were 😬

    The medics have to conform to Nice regs to get drugs approved. I think its called 'a rock & a hard place '

    Think about regular xrays tho .

  • I suspect that this may be a costs issue as I hear that biologics are extremely expensive... What does the NRAS Helpline say?

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