it’s a long while since I was here, and glad to see familiar names still ploughing on.
I had years of remission but last two have not been so good and now on the floor. I know it’s rude to just suddenly reappear and rant, but hope you understand.
Have been through several unsuccessful changes of drugs and lots of steroids and have just finished 12 weeks of Amgevita. Which has not helped at all.
Looking through my notes in preparation for appointment on Tuesday I realise that I was prescribed this in 2022 when my Enbrel first failed! And it didn’t work then so why did my rheumy re-prescribe it! I imagine it was an oversight but I am furious as have just wasted 12 weeks in pain. Had a blood test yesterday and bloods are the worse they’ve been in 14 years.
I don’t know why I didn’t pick up that had been given two biosimilars of same drug - but I shouldn’t have to check surely. That’s the doctors’ job.
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I am finding it brilliant to be fair. Unlike the NHS where I think you have to try 5 DMARDs before they will consider a biologic my consultant here just put me on imraldi without hesitation when my last DMARD failed.
Having a total knee replacement on 13 February for OA and only had to wait 3 months for the appointment.
Nothing but praise for the French healthcare system.
That really sucks and I can see why you’re so angry, I would be. I hope they help you next week at your appointment. Make sure you tell them that you’ve been on it before.
Could it possibly be it was so long ago the Dr who prescribed it was not there and they didn't look far enough back to know remember you didn't obviously remember either until a detailed search?
Same doc, and has been same doc for about 10 years now. She is a sole practitioner (different system here). But yes as well as being g angry with her I am kicking myself that I didn’t check.
I was only thinking yesterday that we hadn't heard your wise words for a very long time. So sorry to hear you've been suffering & trust your doctor will find the answer this time.I always value your comments when posted - always so balanced and wise
oh sweetheart. What a fundamental error on their part. Rant away. It also served as a reminder to the rest of us; as if we didn’t know; that we have to be ‘on it’ and guide/advise the professionals. So thanks for that. Mine is ‘you can give me a steroid injection if you like but I have stopped responding to them’ usually met with disbelief and an insistence we try.
That’s interesting. A steroid jab has always been my go-to rescue remedy but the one I had to get me through new year’s eve did diddly squat. I thought perhaps as inflammation was so high it couldn’t deal with it, but maybe I’ve stopped responding to those too. 🙁
I don’t even respond to joint injections steroids, let alone subcut. I stopped responding quite early in my RA journey. Probably after 3/4 subcuts. They still don’t believe me though I managed to persuade an ortho this week who wanted to give me a shoulder injection we would be wasting everyone’s time and money! I’ve got first Rituximab on Thursday. Yes I’ve told them I don’t respond to steroids. Goes in one ear and out the other.
Perhaps she thought that although it hadn’t worked last time you never know - it might work this time round - or maybe she just didn’t notice.
Write a nice clear list for her with everything you’ve tried in the past and how you responded so that it’s all right there in front of her and she doesn’t have to look back through all your notes. Good luck.
I’ve missed your wise posts here, but am sad to read your news. Just know that you can rant away. From the first time I came on this forum, your thoughtful writing has often made me feel heard, sane, and hopeful. I bet I speak for many when I say I’ve got your back.
hey good to see you back hh , I’m not doing so good myself at the minute , got an appointment for 13th feb , my bloods don’t show much inflammation wise but body definitely not good , think you been missed , let’s hope you get sorted soon ….
Thanks. I’ve never shown much inflammation in bloods so this is first time for ages that it does show. Luckily my rheumy always looks at me not the blood result. Hope yours does the same.
So sorry to hear you're going through such a crap time HH. I hope things will change for the better when you see your consultant. Rant away on here, you have always encouraged and supported others over many years and your kindness to me (and others) when I was newly diagnosed I shall never forget. Thank you. Thinking of you and sending all good wishes xx
Thank you, it’s nice to be remembered so positively. Just looked up how you are and have you sorted your nasal drip? I developed that about two years ago and seems it is an allergic reaction (possibly to the drugs!). I take a non-sleepy anti-histamine daily now to control it.
Welcome back, sorry to hear it's because your in pain. Obviously it's the Dr's job but I feel it essential to always advocate for yourself.
TBH in my job as a vet I have lots of patients and I absolutely try my best to understand each one that is on long term meds but it's difficult.
I feel that each owner has only one or a few pets to remember details of so if they question me that's perfectly understandable. I'm prepared to accept at times I've missed a detail in the notes.
I'm currently trying to get my GP) pharmacist's head around how much steroids I need. We are three phone calls in and I've to ring again today. 🙈
I know it's crap fighting this disease and at times the medical team but hang in there. Things do get better. Yesterday morning my feet were awfully sore, this morning it's my wrist but at least the feet are better
So pleased to hear from you but sorry things are not going well atm. Amgevita didn’t work for me at all (6 months of it in 2023). and I can well imagine your frustration at being prescribed it again.
I am finding the nhs very frustrating atm!
I’m now on Rituximab infusions - had the first 2 in June/July 24- and feeling better than I have for some years RA-wise with most of my pain etc coming from already damaged joints. My last 2 rheumatology appointments have been cancelled however so it is left to me I guess to decide a) if the infusions have worked and b) when I need another one. No contact at all from rheumatology since the infusions so I have no idea if/how often I should have blood tests. So far I’ve had 2 since July - both instigated by me. Rant over.
I agree. My next scheduled appointment is in July- so not sure what I’ll do if that’s cancelled too. I do have the rheumatology secretary’s phone number so any problems I’ll have to ring that. Unfortunately in the UK we seem to be moving towards a situation where appointments for chronic conditions are not booked routinely - only if and when the patient asks for one directly.
You need to call your rheumy team to ask when they plan your next infusion. These days I think Rheumy departments are so busy we need to be the one to tell them how we are doing. It’s not a perfect situation, but from my NHS experience in other fields recently it’s a lot better than most.
Everyone one is different & can rely on their infusions lasting for different periods of time.
I find you need to have blood tests every 6 months , otherwise you get a reminder from the Laboratory, but I have been on Rtx since 2016,& now only need an an infusion every 9/12 months. ..just contact your team & ask for advice. ….a quick note with all details & your phone number will probably get a result.
Thank you. I wasn’t sure how to proceed tbh honest! I did tell my gp and she arranged for an inflammation blood test to be added on to ones she’d requested - back in October. That was fine. Then I left a message on the rheumatoid arthritis nurse helpline asking them to let me know if I needed another blood test and they sent me a form (nothing else) for last week.
I may try to email the rheum dept tbh now it’s been 6 months since the second rituximab infusion and I’m getting a few more twinges. My first cancelled appointment was for July last year so I had assumed that I would find out what to do re repeat doses etc then! Never happened and then life got in the way and I guess I was waiting for at least 6 months to pass as I know that’s the minimum gap.
I have found it’s all a bit casual as long as the Rtx is doing its job…that suits me,,, the less time I spend attending NHS appointments the better.
Unless I have a problem my instructions are “ just give us a call when you feel your next infusion is due” During Covid I went 15 months & that was when 9/12 months was set & so far it is working well.
Morning helix helix. It’s so nice to hear from you, although obviously I wish you were in a better place with your RA right now. No need to apologise for coming on for a rant - I think most of us probably owe you far more than that for all the help you have given to others over the years. Very frustrating to have to keep going through the drugs to try to get some relief - sounds like it might be time to try something radically different drugs wise? Or maybe even look at whether there is something else that you can tinker with to see if it has any knock on benefits - for instance, forgive me as I don’t know where you are in the menopause journey, but I have realised that since being on HRT my RA symptoms seem to be a lot more stable. I can only assume that the fluctuation in hormone levels before were somehow contributing to flares, and definitely fatigue levels. Anyway, I wish you best of luck for your next Rheumy appointment, hope she can come up with a new plan and please keep us updated as you have been very much missed! 🤗
Bonjour Madame, I'm sorry to hear that you are no longer in remission. You've always been so positive and kind. It's rubbish when you have to start all over again. You really don't deserve this. As for the medication, I very much hope that you'll find something that will get you back to a level that is manageable and yes, it is the doctor's duty to make sure they prescribe correctly. My heart goes out to you and I have everything I can crossed for you. All the very best. x
Hi welcome back. I’m sorry things have changed for the worse. That’s rubbish after being in remission. You somehow don’t expect it. Is it possible that the Consultant decided to give it another go? Just a thought. When I developed lung problems they did discuss changing back to Enbrel. It’s strange your Consultant would do that. Anyway I hope they get you sorted asap. It’s awful being in constant pain. Take care x
Really good to see you posting again but sorry that you have had a rough couple of years, your posts and replies were very inspiring when i was first diagnosed 12 years ago and beyond.
I’ve had a rough year after quite similar to you being taken off Rituxumab which has worked well for 7 years going into a severe flare while they did lung tests then , to try another med for 5 months which did not do a lot, now going back on Ritux, a wasted 5 months!
Wishing you all the best and I hope they get you on a Med that helps very soon. X
I used to think the first 18 months - 2 years were the worst : trying to accept an incurable disease, wanting to try everything to fix it, having to deal with lack of comprehension when you don’t really understand yourself.
Now I’m not so sure. It is soooo hard to pick yourself up after a drug fail and start again. Good luck for Ritux mark 2. When I retried Enbrel a year after it failed it did work for a while.
Hi HH, Yes I fully agree with you! I’ve had the toughest year since diagnosis and the worst flare , not being able to take any meds for 4 months though didn’t help and I went into a severe flare, my RA is erosive so I was stressed about losing my elbow joint, which I’m still battling with now. Already lost my wrists etc.
It is very hard to pick yourself up but we can do this, we’re a stoic lot with RA etc but it does get you down when things fall apart especially if like you the disease had been well controlled and could get on with life. Nobody fully gets it like we do though and you obviously learn to self manage yourself and what you need as time goes on.
Good HH..I’m wishing you all the very best and please let us know how you get on. I only tend to come here when going through a rough time so that’s been a lot the last year!
oh lots of gnashing of teeth on that one! People say it’s just 12 weeks but the before period, the after period , the restart on a new drug and whoosh goes half a year of your life.
I get it, you try to stay hopeful but crawling along a floor trying to keep hope up is hard!
I’ve just had my Tuesday hope day. She’s actually not sure what’s happening as atypical presentation. Which I don’t mind as prefer doc who question things rather than just doing what they always do.
So MRI on wrist, short course of prednisone, and prescription for Orencia once have had MRI as wants a new base line.
Hello HH. I come back here occasionally to see how old friends are doing and when I need a busier community to ask about treatment protocols etc. I tend not to stay long because NRAS posts then crowd out my email feeds. I was relieved to see you’d posted again after quite an absence although very sorry about the reason for your post. I think I just read that you’ve now seen your Rheumy and that you’re to have an MRI of wrist but no word yet on possible treatments left to try?
Have you tried Rituximab yet I wonder? I had my first round of this in September/October but benefits less obvious for me with Systemic Sclerosis than with RA I guess. My inflammatory arthritis (non erosive) and arthralgia/ muscle weakness are twinging again now and I’m down for a phone review in February. This was actually meant to take place in December but clinics are so overwhelmed that Feb was first they could offer. I’m guessing this is going to become the norm here in Scotland now and there’ll be lots of new referrals needing prioritised so I don’t fuss - am broadly fine anyway. Bloods opposite to yours post Rituximab- CRP down to 4 from 120 in August! I ask about this treatment because I have met several with severe RA on the infusion suite while I’m getting my monthly Iloprost infusions for Raynaud’s and they swear by Rituximab. One woman only gets it annually now but says it’s put her aggressive RA into complete remission. Anyway I hope things remit again for you with whatever treatment is decided by you both. .
So glad you are broadly fine. I found your medical situation a bit overwhelming, a jigsaw of 5,000 pieces rather than a manageable 500, so not sure how you cope.
Rituximab was her second suggestion but I prefer to keep that as the last resort so have accepted Orencia. Well eventually as she has ordered full blood test for just about everything, and x-rays and an MRI to be done before I start. And first date I can get MRI is end Feb.
It’s the endless waiting I find hard. Especially as we have a new rescue dog that needs educating so not being able to walk easily is very awkward.
Thanks. I think I recall you having concerns about Rituximab due to your remote French location and what would happen if you got seriously ill while on it?
Yes my situation was overwhelming for many years. But you’ll be relieved to know that it’s calmed down a lot since I was finally unequivocally diagnosed by an expert of world renown in 2023 - and there are only a few who specialise in Scleroderma/ SSc. Having a rare antibody for a rare disease helped me get seen by this professor because he admitted he was intrigued. He easily confirmed SSc and also hypermobile spectrum disorder / EDS - which is the polar opposite collagen vascular process. He recommended Rituximab as a good second line treatment - which I’d already been tested and accepted for. But I put it off for a few years because it’s such a big gun. However, once I finally had stoma surgery in the summer and got past my first brush with Covid not long afterwards - I felt the time had come. I guess with SSc there are far less targeted treatments than RA so it did/does feel like a massive gamble. But having tried 5 dmards and failed 4 over the past 14 years and then had a terrible reaction to IVIG in 2022 - I decided risks to me of SSc progressing probably outweighed the risks of Rituximab. Hopefully these won’t be famous last words!
I did have a strange bout of mild pneumonia in December which didn’t really correspond with anything I’d previously experienced of chest infections. It was easily squashed by a week on antibiotics. I already have a portacth so all infusions are straight forward and thanks to the steroid infusions as pre-med I walked a very long way afterwards feeling on top of world, leaving both dogs and husband hobbling along behind me trying to keep up. Would that this brief bout of euphoric activity lasted! I’ve no idea how you’d be for having all day infusions or staying over in your hospital if needs be?
As for retrying treatments, even unwittingly - well I retried Hydroxy once many moons ago and it worked rather well for my RA, having not touched it first time round when taken alongside methotrexate. Then bam came a nasty allergic reaction six months in. I know it’s not much consolation but I always have to remind my lovely rheumatologist of treatments that I’ve tried and failed and she has them listed in bold on each clinical letter after my diagnoses so easier to tick off. She’d definitely forget otherwise. At least your rheumatologist is running the full gamut of tests and this should give you both an excellent starting point to consider next steps I would think.
Last time I was at rheumy clinic in August I was relegated to a specialist dr (a GP who specialises in rheumatology) who sorted out Rituximab on her behalf, pinched the skin on backs of my hands and told me I was lucky to be hypermobile. I politely nodded my affirmation at her because I often do feel things could be so much worse. But afterwards how I frothed! I know you’ve often said here how hard it was for the newly diagnosed and, strange as this may sound, I still feel a newbie to SSc and EDS just a few years into solid diagnosis. So next month over the phone I need to convey between lines to my rheumatologist that I’d rather only be seen once a year by her in person than relegated twice a year to this jumped up smart arse GP! I wonder if, with each flare or each time we fail a treatment or are newly diagnosed or rediagnosed - we turn into toddlers taking first steps all over again and having mini tantrums when they aren’t holding our hand and when it all seems to take forever? X
Ps re being extra immune-compromised - my brief spell of pneumonia may well have been nothing to do with Rituximab as I’m also on Mycophenolate.
Pps Also a post on your new rescue dog would be v welcome. Is he/she a mountain dog? We also have a rescue puppy of sorts. She’s tiny and came over from Catalonia via our son’s partner’s parents - who didn’t want her. She’s scared of everything while simultaneously being queen of the castle. I’m trying to train her but somehow she can’t grasp the art of lying down without being gently pushed down by my hand each time. So I can only imagine a larger dog would be ten times the work and v hard on your poor body.
Welcome back. I have missed your wise counsel to various postings on this site. It’s so difficult coping with all the challenges that RA poses and it sounds like you have had a good few of these over the years. I do hope that you find a solution soon with your rheumatologist and it’s a pity that she got things wrong and set you back in your recovery. Good luck and all the best.
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