I’ve had rheumatoid arthritis for 18 years now and no matter what I’ve tried, nothing seems to work. I’ve recently had baracitinib and filgotinib and they didn’t work either. they want me to try tocilizimab, I’ve told hospital so many times I don’t want to inject myself and they never listen as I take severe panic attacks, this happened when I first started with adulimimab so it’s not like I haven’t tried as I also tried entanacept after adulimimab. My questions are, has anybody had this issue with failing on medication, if so is there anything that has helped you at all because I know they’re isn’t much left to try, the doctors have said that already. Also since pre Covid my rheumy team are non existent, I have to phone every other week to get anywhere with them and they talk to me, promise to get back to me and they don’t. I’ve not seen a consultant in years. I have asked to change hospitals but they said I’m not allowed. At the moment, I took my last filgotinib 2 days ago and been left with nothing as the meds aren’t working so the hospital has stopped it. 4 times within 10 days I spoke to them about this and got no response. So sorry for the long post, any advice would be appreciated 😃
Written by
Lornap1
To view profiles and participate in discussions please or .
As you say failing do you mean after you’ve given them time to work as nearly all take 12/14 weeks. It’s a hard one as depending on age you may not be able to get JAKs so it’s injectable or infusion for the biologics. I don’t know how many there are and suggest you look up NRAS website to check. But here they’ve said people are going to be limited in number of choices so I’d suggest that you need to really discuss your options with the clinic. It’s hard with a needle phobia but perhaps they could or your GP could do get some CBT training for you. I assume that you’ve tried MTX , LEF and AZA before the biologics were introduced and that you’ve not got another condition or disease that might be the issue. I wish you well and hopefully you can discuss this with your GP to try to get more help.
I tried everything before the biologics, sulpazaline, Arava, leflouminide etc, entanacept and Adalumimab both injections, ruituximab was an infusion in the hospital. All drugs I have tried, I’ve gave them over 1 year to work but nothing. I have no other disease that may contribute to this but I was doing a bit of research and I was diagnosed with H pylori in my early 20’s. I had therapy for that, didn’t work so I had triple therapy, didn’t work so I was given emoprazole and have been taken them ever since. I was diagnosed about 7 years later with RA so I’m wondering if they’re is a link between these 2.
My husbands had H pylori it was treated as you say with two different antibiotics. I don’t know if there is a link but seven years is a long time to get a connection. Are you sero negative or positive ? It’s hard to understand how nothing works as antibiotics are completely different medications to RA and so I really think you need to get professional advice. Perhaps ring the NRAs helpline ?
Thank you for your advice, I think I’ll give them a call. I’m sero positive and my RA is severe and very aggressive. I only thought about the 2 conditions together due to reading a post that was on here, I’m not reading too much into it but I’m finding it interesting. I now know there’s new treatment out for the H pylori so I’m going to ask for that. I’ve not much luck when it comes to treatment 😂.
It’s well known that HPylori (and its treatment) wrecks your gut and results in leaky gut syndrome which is a trigger for many autoimmune conditions.
I’ve had severe RA for 25 years, been through most of the medications, had both knees replaced and multiple foot surgeries. Rituximab was the last drug I was on but I still had to supplement with painkillers and steroid shots. I’ve also had HPylori.
Fast forward to now and I have been off all meds for eight months now. My ESR (which was 50-65 for over 15 years) is now around 20.
What brought about this incredible change was a metabolic/dietary reset programme that I followed (helped by a registered nutritionist) with the main aim of reducing chronic inflammation by repairing a leaky gut and balancing the gut microbiome by making some dietary changes and adding in a few supplements. The bonus was that I lost about a stone in weight and all IBS symptoms have disappeared too. It took just three months to achieve this and I have stuck with the changes.
The results have astounded both my GP and Rheumatologist and I wouldn’t have believed it myself if I hadn’t done it.
Hi, I’m really pleased to read about your fantastic progress with the nutritionist. I myself have had RA for 20 years and have bounced around various meds. The best one for me was Humira before it came out of latency, I was in remission for 14 years. But flared when they switch me onto a bio similar. I’m currently struggling to find something to work and considering a nutritionist after reading a lot about the gut connection. I wish you all the best.
Tocilizumab was a real game changer for me, after trying many different drugs - perhaps give it a go? Appreciate you don’t like self injecting - is there anyone who could do it for you? And from experience, the tocs self-injections are the easiest - they really don’t hurt at all. My partner does mine and it’s become routine. Sounds daft, but I imagine it’s like the air injection pens they used to use in Star Trek and I don’t even feel the needle.
I don’t have needle phobia, it’s severe panic attacks I take. I’m absolutely fine getting bloods taken. I couldn’t face getting the Covid jabs during the pandemic, I won’t get the flu jab etc.
Ask either your GP or Rheumatology team if you can get CBT for needle phobia as it is seriously impacting your health. My daughter had CBT for needle phobia arranged by the rheumatologist and it worked really well. She went from having massive panic attacks to happily injecting herself in about 6 months.
You absolutely can change hospitals, your rheum team aren’t able to organise it, but your gp can send off a 2nd opinion for another hospital. The only caution I would urge is that many Trusts have a strict limit on the number of biologics you can try. So it may be worth researching. Some Trusts have the information available online. Depending on your age you may be eligible for JAK inhibitors.
Ring the NRAS helpline. They will advise on the questions to ask. They helped me. I’m transferring on Abatercept and new hospital/health authority said that is fine. It’s my 8th drug. But check before you move. It’s not rheumatology who arrange the change it’s your gp. Google ‘your choices in the NHS’. Sorry for some reason I can’t pick up the link to pop in here for you. You have a ‘legal right to choose where you have you NHS treatment’. I’ve only moved for rheumatology atm!
Your GP can refer you to a different hospital, you have the right to move hospitals. Also you need to write PALS and complain. Tocilizumab can be administered as an infusion at the hospital so you don’t necessarily have to inject yourself. I know how you feel about self injecting my husband does my toc for me.
It might be helpful to ring the NRAS helpline for some support.
I would get a GP face to face appointment to sort referral to another hospital and some interim medical support, you can go anywhere you desire (when I moved my rheumatologist said I could go to the furthest point in the UK and still be on her books if I so wished). Also take someone with you to the appointment as tunes tend to change when there is a third person present (sad but true).
You are absolutely right about a third person, I know exactly who I will be taking lol. My GP said I couldn’t about 3 years ago. I asked just due to being ignored all the time. I will certainly ask again and won’t stop until I get somewhere
Haven’t got a lot to add other than I’ve been on tocilizumab nearly 7 years and it has worked really well. You can have it by infusion at the hospital if your clinic offer it. I self inject with a syringe but it also comes in a pen now I think which may be better for you.
Don't know how long you have given the meds too see if they work but I've tried many over the years I was diagnosed at 25 I'm now 53 and for the past 6 years I've been in 6 monthly infusions of rituximab and but it was 18 months before I saw any benefits from this. I don't like to inject my self either and I had a family member to do it for me. Is that an option for you ?
There is very little face to face support at the moment from the hospitals as in follow up appointment unfortunately. Hope you can get some relief from meds soon.
I’m 48, I was diagnosed when I was 29. I’ve had rituximab for about 4 years, not a lot of difference but out of everything, it worked the best. I have had 2 out of the 3 jak inhibitors, both failed dramatically and the first 1 I was on for about 30 months, the second one it’s been a year. Hopefully I will find something that does work eventually.
I’m sorry for you. I’ve had severe, refractory RA for 35 years and have had most of the drugs known to medical science for it. None of them has given me years of relief - if they last two or three I’m fortunate. The only medication that has run throughout is prednisolone ( and before everybody piles in about it, it’s the only drug which has worked for me consistently when all others have failed) as it’s reduced the flares and almost constant inflammation which has plagued me for years.
I’m not advocating that for you - we have to be treated individually- but I can commiserate with your dismay that you haven’t found anything that’s helped. Over the last four years I have been on two JAKs, both of which have been fantastic until they failed to work and my consultant whom I’ve been with for 25 years is at his wit’s end as to what to prescribe next. A larger dose of pred at the moment and he's consulting with his colleagues. So it's not as easy as it sounds to find the right medication and you have to trust in your rheumatologist to keep on looking for the best fit for you.
With regard to not being able to move to a different team or hospital, that’s rubbish. As Ali_h said get your GP to re-refer you to a different consultant in a different hospital. There’s plenty of them out there and you may find you get much better treatment than you’ve recently had. They should also address your fear of needles. I have been a clinician in the NHS for many years (though now retired) and there’s no need for the poor experience you’re having now. If you need to complain, go to your local Healthwatch team which oversees all the care in your Integrated Care Board area, or write to the chief executive of your current hospital. Always go to the top directly.
In the meantime, you probably need your GP to prescribe decent pain control while you wait for a resolution to your problems. Hope you get them sorted pit soon. All the best.
Wow you sound just like me unfortunately. At the moment I am on prednisone 15mg from my ophthalmologist due to having scleritis, they want me off them as I’ve been on them over 1 year. The prednisone is the only thing keeping me from going into full flare up. I’m in agony at the moment, my fingers etc are like sausages. The problem as well is they send me information about the drug they put me on with no discussion or anything about them etc. it really is hard to rely on prednisone, every one knows what they do and how bad they can be but when it’s the only thing keeping you going then I’ll take it 😂
Yes, it’s very hard to rely on prednisolone but as my consultant says you have to weigh up the benefits versus the risks (as with so much in life) and if prednisolone is keeping you from melting down I’d keep taking it too!
As I said I’ve been on it for 34 years, have never put on weight on a mainly maintenance dose of 7.5 , sometimes 10 mgs daily and have had very few side effects though I have developed glaucoma after all this time. I have osteoporosis in my right arm but none anywhere else and I can function pretty well. I am still on Filgotinib after two years but nobody’s sure if it’s having any significant effect now. I creak from osteoarthritis and dodgy discs but that’s not RA so sometimes you just need to go with the flow and in our case it’s probably steroids forever!
I’ve tried that didn’t work either although it was the best out of all that I’ve tried, they did say at one point that they may need to go back to previous drugs.
I took tocilizimab twice for one year each time. I self injected. It doesn’t hurt when I did the injection in my tummy. Away from belly button. It did work but I got more infections. Chest and uti and I had to stop. Now on benepali which I self inject and it hurts/stings. Way more than tocilizimab I’d recommend giving tocilizimab. Go. I had tried Filgotinib bariticinib sulfasalazine. Methotrexate leflunomide. Nothing really got to the bottoms of things. Hope this helps
I developed an aversion to self injecting so I get it.
I don't have a problem with anyone else sticking needles in to me, thankfully.
At Rheumatology they say 'oh it's the meds' but it started when I was mixing up concoctions to inject while on a clinical trial and that was a placebo.
Later tried the Metoject pens for MTX. Thought I'd be OK at first but just thinking about it made me feel ill. Couldn't look at the cupboard I kept them in without wanting to heave.
Hi,I am in the same boat, I have tried many biologics, dmards jabs etc and I either have an allergic reaction or the side effects are too bad for me to continue safely taking them.
Rituxan was great but I had serious lung side effects so they stopped it.
I'm on nothing at the moment as I'm waiting for my chest to have a rest before I try filgotinib.
I'm taking high dose curcumin and trying to stay calm and positive.
I have just started the carnivore diet as I have rheumatoid arthritis for around 20 years. Not too severe up to 2 years ago and i have never taken medicine except alternative and homeopathic, but now my shoulders are without cartilage and one foot is really bad now and some days really agony to walk. The orthopaedic surgeon told me I have to stabilise the RA and quite honestly the shoulders have really a debilitating effect for driving and sleeping. I find the carnivore diet difficult as I've always kept off animal products and tried to remain non gluten and don't like meat much but having read about Mimi Morgan I have to give it a try. I'm eating eggs and a minimum of goat and sheep yogurts and cream because I just can't eat enough meat, even ham and cold meats. I can't tell you yet if there us a benefit but I've got to try it. My doctor has encouraged me. Think about trying the diet.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Just feeling so very low
Failed on 4 Dmards - consultant this week what are the options?
