Hello, had RA for more than 13 years , been taking tociluzimab for years and it worked well with little pains only.Now for the last 8 months , out of nowhere I've been in agony most days and feeling like a cripple.
I eat well, am healthy, active , don't drink, don't smoke.... no changes but feeling disable now.
Pains used to be mainly on my wrist up to last year and now it's everywhere ( feet, knees, elbows and hands). Nights being a disaster with the pains.
I like to run and go to the gym but can't with the pain.
What did I do wrong ??why all those flare up after remission for years and years .
So depressing.
My rhumatolog is not helping at all and keep canceling my review appointment for no reason ( appointment feb2025 now instead of July 2024 because they are busy)
I take omega 3 ,.vitamins and just started circumin .
This is not a life I want and I do everything to be healthy.
I would try anything to have less pain , any advice please?
Thanks
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i feel your pain! I’ve had RA for 20 years but have never been in remission. However I did have 10 years of less pain while I was on the biologic, Enbrel. Since that stopped working I’ve tried several other meds but nothing works!
Re your appointment, can you talk to PALS? Or is there another hospital in your area with a rheumatologist? It’s all such a post code lottery.
Thanks, maybe I should have said " less pain" in past rather than " remission " as it's always been here .I have never heard about PALS and had to look online what it meant .
I think other rhumatolog wouldn't want to interfere with my one , maybe unless I go private from what I understand.
I had to go to hospital a.few months ago because of RA flare up and black feet but even them didn't want to interfere.....
I really think that you need to complain loudly to your rheumatology department - sadly it seems that in areas that is the only way. If they don't respond positively, you need to complain to PALS. I don't think that changing rheumatologist (if it comes to that) should be a problem and although I realise that it's tiring to keep pushing, sadly I think that's what you need to do. Good luck!
Going private would probably not help you… ….Biologic drugs can only be prescribed by an nhs doctor. …private rheumies have to transfer patients to their nhs practice to prescribe them….so you are probably best to try for an earlier appointment with your present rheumy.
My rheumatologist was on a sabbatical at the John Radcliffe for 12 months so I saw a locum, and she was the one who prescribed Hydroxychloroquine, which was the cause of my pneumonia. Since my usual rheumatologist has returned I haven’t had any issues, and she sees me about every 4-6 months, and she has put me on my 3rd biologic, Cimzia, which seems to be working, well I managed to strip my bed this morning, which I haven’t done for a long time.
I just reread your original post and am sure that you didn't "go wrong", it just sounds like you need a medication change which is why you need to push your rheumy team for help.
Totally agree with Boxerlady. Nothing you’ve done. Sounds like the Tocilizumab has stopped working and you need a change of medication.
It’s happened to me many times over 30+ years. Having been on something and poddling along nicely all of a sudden you start flaring, fatigue starts up again and pain increases over weeks or months. No fault of yours!
Your rheumatology team should be onto this if you’ve been in touch and stressed your problems but you need to be firm and ask for an urgent appointment otherwise you’ll just get put off. Are you able to email the department and tell them what you’ve described to us? You can always go back to your GP and ask them to expedite an appointment with rheumatology. You have to be pretty proactive these days but it certainly sounds like you’re in trouble now and need to be seen in the next few weeks.
Best of luck, take Paracetamol and Ibuprofen, if tolerated, very regularly to keep your pain levels down and keep politely shouting until you get a result!
Thanks for your replies , I'll try to change my appointment and get seen earlier on. I'm quite angry that hospital knew 6 months ago I was at my worse and nobody had been contacting me since. I dislike changing medication but I guess that would be the next option .
In my experience it is worth a private appt with rheumy. S/he then gets you in the nhs for a new drug instead of it starting after you see them in nhs. Still takes forever though.
I would say you have probably developed antibodies to the toc and will need to change your medication. You need to ring your rheumatologist and tell them about the pain you are experiencing as they won’t know unless you tell them. Keep pushing until you get an appointment with them. Also speak to your GP as they may be able to give you something to tide you over until you see them.
Firstly, please don’t blame yourself, it’s not your fault.
RA is a chronic disease that can just get worse as we age. Medication can manage and slow the progression, but oftentimes, eventually stops being effective. If you are in pain but don’t have swelling and higher levels of inflammation, at least your joints won’t be eroding! Small compensation.
I agree that you need to keep pushing the Rheumy for an appointment. Sadly, “he who shouts loudest and longest” is the one likely to be seen. Rubbish system. The NHS is broken, for sure.
I think you should phone the rheaumy nurse tell them what's going on and ask if they can put uou through to thd consultants PA often they will talk to the consultant and get you in earlier,good luck.
This. Fortunately a year or so back my consultant gave me her PA/secretary’s phone number and the last time I found myself unable to get through via the Rheum nurses ( they now reply to voice messages in weeks rather than days) I phoned the secretary and the consultant rang back the next day. I’m hoping that is the way forward for me as my appointment was also moved from July 2024 to Feb 2025 due to the consultant being ill on the day of my July appointment. Crazy. 😫
From what I've read, natural supplements like curcumin and turmeric (I believe they are mild anti-inflammatory agents) can ease things a little, but are very unlikely to effect any significant improvement on their own. Unfortunately, RA really requires modern medicine. I fared very poorly prior to starting a biologic (Cimzia, in my case) and I assume that at some point in future, it will stop working and I'll have to try something else - I've read and talked to many people for whom this is the case. I also believe that menopause can upset the applecart. I fully agree with those who've said you'll need to be aggressive to get your rheumatologist to act on your behalf.
Your RA seems to have developed in type and spread as well as severity and as everyone has said needs review of treatment. My rheum nurses have always been most helpful for me in getting’extra’ appointments, but if that doesn’t happen in your hospital perhaps your GP could apply pressure on the Rheum team?
Hiya. So sorry you’re feeling so crappy. On another tack, I noticed your age and the menopause can have an effect on things and it can be more severe when oestrogen levels drop so wondered if that was something you’d considered/looked at? Xx
Oh yes Interesting, I didn't think about that but you might be right as it is same timing .Something to mention to my next appointment. Thank you very much .
I feel overwhelmed but all of you taking time to reply to my message and giving good advice , such a good feeling to see people understand me. Around my friends and family nobody has RA and I'm sure they think it's not that bad. As RA doesn't always show physically ,people think it's fake ......
Ah, my daughter in law still thinks I'm exaggerate when I'm having a flare 😕...(after 7 years!) ignore the doubters and just look after number 1. I hope you start to feel better soon. Sending a gentle hug 🤗💐
hi there, I add turmeric to my cooking where possible and use anti inflammation/gut health recipe books where I can. I also use traditional Chinese medicine to manage the condition. It sound like you’re open to trying new things so sharing what is working for me . I wish you all the best
Thanks, yes I do try anything. I take omega 3 , turmeric now, tried preciously lots of diets ( although don't need to loose weight) like raw fruit and veg, gluten free.....
Hi sorry you are having more pain , Do you have a phone number for the rheumatologist nurses? If so give them a ring telling them that you are in serious pain and ask if they could get you an appointment as soon as possible . That is what I have done in the past as my rheumatologist always says to get in touch if you have any problems. Good luck x
We were in remission for years, until COVID two summers ago. Went from HCQ to Humira with good success, not great, for about 8 months. One day, Humira just quit doing anything. Took a few months to get switched to another biological, Enbrel, which is working great. Unfortunately, it's a "cat and mouse" game. The good news, there's almost assuredly an answer for you. Tactic ... become the squeaky wheel, make noise. Do it politely, of course, and with extra sugar. But do keep knocking on the door and letting your voice be heard.
In our opinion, they all come with risks and "black box" warnings. However, when the pain is so intense, the risk becomes worthwhile. We're monitoring for side effects, there's not much more to do. We're limited in options, due to insurance restrictions. If a particular Rx fails, as Humira did, we go through an approval process and end up redirected to the next option. At this point, we're thankful for access to Enbrel. Laying in bed and crying isn't something we'd choose to continue.
I definitely know the flare up pain you must be going through. I've been on Tocilizmub for 9 years and it has worked brilliantly. Then all of a sudden it stopped working about November last year. I've had a lot of painful flares for the past six months. I couldn't get a response quickly from my Rheumy Nurses so I contacted the GP who gave me a steroid injection and this definitely helped with the pain. Since then I've had a 6 mthly review with my Rheumatology team and they have agreed to change my Toci and I'm going to try Abatacept starting next month. Maybe your GP could help you with the pain until you can get to see your Rheumy team. If not you should certainly try PALS as other members have suggested.
I phone the rhumatolog nurse this morning and.left a message on answer phone. 30 min later I get a text saying they moved my appointment to beginning of Oct ( 3 weeks time).
That's crazy .....I didn't know it would have been so easy and so quick.
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