For unknown reasons other than we think Rituxumab is not working for you any more my medication was changed to Kevzera (Sarilulmab) in November. The work up checks were done and good to go apart from a Chest X Ray as I hadn't had one for a while.
A shadow area was found on my lung with suspected interstitial lung disease( possibly RA related) , breathing tests and CT Scan ordered, which I had in January. I finally saw the Respiratory Consultant in March who ordered a Bronchoscopy which was very unpleasant but do able just waiting for the results.
I have still not been allowed to start on my new meds after chest investigations are completed and have been in a severe flare since the beginning of Feb a year after having my last Ritux infusions, I never had to have steroid injections or even take an anti inflammatory pill whilst in Ritux so it must have been working!!
I have sent many requests to Rheumatology asking for a call from my Consulaynt as I'm in severe pain and don't know how much more I can take my quality of life is rubbish and takes an hour or so to get dressed so days I don't need to go out I dont .. I did have a call from the specialist nurse who told me to contact my GP for pain relief so now have Naproxen which is helping but not enough.
It just seems once you're in the system the RA consultants don't bother with you, I was told he is now doing a "dual" role so can't call. I understand I need the chest investigations but just need someone to help me as I can't carry on like this much longer, nearly 5 months this has taken I also have a erosive RA so I dread to think of the damage it is doing.
Hope I get some answers soon, has anyone else been left hanging like this? I just feel my so work don't believe me even though I've supplied evidence and I just can't cope with the pain any longer.
Thanks for reading.
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3LittleBirds2
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Sorry to hear what you're going through. Personally I think that it's simply not acceptable to leave you in this condition and I would be pushing Rheumatology hard. You've taken the nurse's advice re Naproxen but it's not helping enough so maybe you need to tell her that. I know that some Rheumatology departments are struggling for staff but some (like mine) are coping well so it really isn't good enough. Angry on your behalf! 🤬
Thank you so much, I am a pretty strong person we have to be don't we, but this is destroying me. Respiratory did get me an urgent Bronchoscopy but I still can't start my medication or have any more steroids injections yet . I've just sent an email to Rheumatology telling them I can't manage this pain anymore. X
Well done! Takes lots of courage - which you obviously have - and strength - which is difficult to find when you're having to deal with so much. If you don't get a positive response it might be worth calling NRAS for advice about what to do next 😉
Indeed, I do have to say Respuratory did ring me last week and they are trying to push things along but Rheumatology are just shocking and have always been , I was just so grateful I was well controlled on Rituximab as thankfully I rarely had to contact them. I've not seen my RA Consultant for an apointment since approx 2021 apart from when I called into the hospital with another's severe flare in Nov 22 and he told me to pop down to see him, I am just asking for a phone call 😢 Thank you for giving me a shove also to send them another email 😊 xx
As it worked so well for you is it worth just asking if you can go back on Ritux to calm your Ra for you , I feel so angry for you ,hope things resolve quickly x
Reading what you’ve written and what state you’ve been left in should make us all feel really angry on your behalf.
There’s no excuse from your rheumatologist for leaving you without proper medical care when you’re clearly in pain, low in mood and needing a solution. Shout and keep on shouting. Email, phone and, if necessary, go in person to the department and ensure you’re taken notice of. I know you’re on Naproxen but you may need your other medications tweaked now as you’ve other things going on on top of your RA.
Go back to your GP and if you feel strongly enough get re-referred to a different rheumatologist (you have a right to do that) and if that doesn't work for you for geographical or other reasons, keep on at your GP. Do phone NRAS for advice as suggested by Boxerlady.
Don’t give up! Vile when you’re down and out and feel you have no support but once you’re on better medication and feel you have an ear you’ll start feeling better. Your employer has to give you all the help due to someone with a registered disability and if you’re having problems there go to your HR dept and Occupational Health if necessary.
Keep on keeping on! All the very best and do hope you get sorted out very soon.
Thank you, I'm am just worn down by battling, battling with severe pain and battling to be heard by my Employer and my RA Consultant who seems to have disappeared.. As they are unsure if my chest issues are some kind of A Typical infection, Respiratory have said no RA meds yet which I understand but I just need something for this pain and I'm being told by well meaning friends it will be better when the warm weather arrives..if only !! 😢 I have had RA for 13 years now and this is my worse flare. Xx Thanks again for replying I appreciate the support xx
I am under lung consultant it’s been over a year to get to the point they have now diagnosed obstructive airway disease and now another month (finally) to have my follow up with him re treatment and what it is that I have ie COPD or other.
It’s tiring the battles I have to say and the past month my lungs not been happy but I am able to still take my baritcitnib so at least that is on the go for the RA . My whole body feels like it’s in the middle of a tornado right now between all the issues and I just want to know what’s wrong with my lungs and how to move forward.
I'm sorry to read that you are struggling too and I that it has taken some time to get a diagnosis . It frightened the life out of me when I had a letter just before Xmas saying they thought it was interstitial lung disease. they think I have an Atypical infection I can not start any RA Trestment until they know for sure and Sod's Law it has timed with starting new meds and Rituximab well and truly worn off . It certainly wears you down doesn't it...I will never take my medication for granted and know that I need it. The consultant has rung me and put me on a course of oral steroids as they have agreed I can have these ... so I'm hoping that helps. I really hope you get a diagnosis soon and thanks for replying xx ❤️
Sorry to hear you are being messed around by rheumatology, could your respiratory doctor not tell them to get you sorted out? In the meantime I’m angry on your behalf too. x
Yes I was ‘feeling abandoned’ throughout 2023. Nearly a year without effective drugs. I feel for you. I went to see convulsant privately in end. That got the ball rolling. Sad but true. Leicester.
Thanks for replying. Yes, I've heard of a few people in our area going private to see a Rheumatologist maybe the way it is going sadly. X I hope you are feeling less abandoned now it's a horrible place to be in x
so sorry you’re struggling in this way and feel frustrated for you. I agree with others keep up the pressure. Whilst your situation sounds complex, it’s not an excuse to leave you this way. I have been in and out of flare for a few months now and was taking naproxen twice a day and co-codamol in between to take the edge off until I had a pred injection last week. Good luck and I really hope you get sorted soon. x
Thank you for your reply. I've finally heard from the hospital , took several emails and a phone call from my Husband though but at least they've contacted me . I've been given a course of oral steroids to help me until I can start my medication. I hope you feeling better after your injection too xx
Don’t give up, things will get better and continue shouting to get the right help you need. Have you tried some dietary changes, might help you focus on something more natural and positive to help, acupuncture can be good for pain relief, someone experienced in autoimmune and perhaps traditional Chinese medicine with an experienced practitioner. Wishing you all the best
Oh LittleBirds I know how you feel, not for the same reasons but I also got to the point I really didn't want to go on anymore with uncontrolled RA pain. If I were you I'd call PALS at your hospital. My sister has had to do that for her husband in the past 2 years and she heard back very quickly and he got an appointment. I know hospitals are short of Rheumatologists but that's not your problem. You've tried everything else so now call PALS that's what they are there for. It's the only thing I can think of and if you decide to do this I hope it works and you get your results and see your consultants very quickly. X
Thank you so much for replying. We are a very stoic lot with having RA and I am pretty strong minded but this has beaten me. I've emailed my Consultant and my Husband has also been on the phone asking for some help. Best wishes and thanks again xx
I've finally heard from them and been given oral steroids, I think it took a call from husband to explain the ramping of pain I was in to get a call though..he's a bit more assertive than me at the moment! Thank you xx
No problem ☺️ I'm so glad to hear this! When I was in so much pain and my Rheumy said we'll sort a steroid injection for you I waited and waited. I eventually rang the actual place that were to do it and they said 'well we're really busy is it urgent'! I replied, well cried 'well I can't walk, shower, get dressed. I can't do anything I'm just crying in pain 24/7 is that urgent enough!'. They got me in very fast! It really shouldn't be like this.The oral steroids I got last time it happened sorted me out, so hopefully it will you too 😊 I started on 30g (6 tablets) a day for a week, then dropping by 1 tablet a week.
Let me know how you are if you don't mind. Sending hugs. Xx
Oh that's awful and you are quite right it shouldn't be like this. Yes, we have a chronic health condition that can cause a lot of pain if we are not medicated properly but it shouldn't mean that we are just left and ignored. When my wrists were fusing the pain wasn't as bad as this and my hand surgeon said they would always operate if it stopped the pain but I coped, I feel like I have broken shoulders and that I need my arms in slings. That is good to hear the oral steroids helped you, I'm hoping the consultant would have sent the letter by tomorrow to my GP so I can get the prescriptions. I hope you are all settled on a medication now and I will let you know how I get on . Thank you ❤️ x
Keep fighting, there will be an end to the pain, they will get u sorted.Do you have a Rheumatology helpline? I have found the nurses who answer ours to be a great help in the past, they often seem to have the consultants ear.
I really understand where you are coming from. Sometimes it´s just really hard to keep going. I wish you all the very best and hope you get some much needed help soon. xx
I'm so sorry that you're in so much pain and don't get help from anyone. I really hope that this changes quickly and somebody will listen to you. All the best.
I’m angry for you too. I can’t offer any more advice other than what has already been suggested. I know it’s no consolation but I’ve been without meds since November too but I don’t have the added issue with lung respiratory issues. In my case I’m just waiting for new meds to be sorted and the quick switch that I was promised hasn’t materialised and honestly I’ve been there done that and got the t-shirt. I got so fed up last week I rang the biologics nurse and begged once again which I’m sick of doing. I’m led to believe that I still have a few more weeks to wait but I’m not able to find out why. So unfortunately it seems you’re not on your own I’m having to rely on fentanyl pain patches and just completed a short course of steroids but still flaring badly. Don’t give up keep pushing for answers in writing it seems is better than a phone call because they have to reply to that.
Thank you..it's awful isn't it I'm in utter despair. I last had a Rituximab infusion in March 2023 which has now completely worn off., I've had bad flares before but nothing like this one. At my latest review which was supposed to be for 2 months after starting new meds, the nurse even thought I had started them so they're obviously not reading the notes and she couldn't get me off the phone quick enough. I understand things take time but it's surely it's inhumane to leave someone in so much pain for a so long, my husband wants to take me to A&E and wait as he says he can't bear to see me like this anymore. I wish you all the best and hope you can start your new meds soon. Xx
I’m so sorry that you’re left in limbo trying to control the pain. You’re right it is inhumane and my husband has said similar, to be honest I know A&E will take absolutely hours of waiting around but although I’m not quite at that point yet it sounds like you are. They’ll probably just pack you off with more painkillers but it’s better than nothing and will at least be on your records that you had to attend. I know it seems like a waste of time but your GP has a duty of care for you and even if it means he has to email or shout at someone it should have more sway than you currently have. I’ve found mine to be very helpful in a crisis hence my recent low dose steroids for a week which helped somewhat. Failing that contact your consultant secretary daily or PALS.
so sorry to hear that you are in so much pain…..no one should suffer like this. Although I dont see the Consultant, unless I pay privately, the RA nurses via him, arranged for me to have 1g of steroid infusions over 3 days to get my inflammation under control, before I started Rituximab. We know they r overstretched but keep ringing 🤞
I’m so sorry to hear that you are struggling so much. I know what it’s like to feel that nobody will help you and you get so down. Your GP should be able to contact the consultant to ask for advice on prescribing oral pred, or the RA nurses at the hospital should be able to get permission to give you a steroid injection. Keep trying and don’t be scared to say just how bad things are - I’ve cried down the phone many times, it’s nothing to be ashamed of. Good luck xx
I feel so upset reading this. I think you have two options - ring and email every single day, just keep doing it and say it’s an emergency every time. It is. They have to step up. Alternatively, present yourself at A+E and again say it if an emergency, that never in your life have you felt in this pain with a flare and it is being clinically unmanaged and is not tolerable. Sending you strength and a big hug. I’m so sorry.
I also suggest getting PALS involved. They will liaise on your behalf. I don’t know if you can have steroids but in the past a rheumy nurse from helpline has got prescriptions for steroids for me. It’s awful that when we are at are worst we have to then fight to get treatment. My GP surgery have also contacted rheumy when I was under another hospital. We all know there’s a shortage of rheumatologists but you deserve proper care and it’s no excuse for them to leave you in pain. NRAS very supportive to talk to. Good luck -let us know how you get on. Xx
Thank you! My hubby did contact PALS today and they rang and left a message. But I had a call from my Rheumatologist this afternoon finally, he has prescribed some oral steroids for a me to hopefully help until I can start my medication, shame we have had to shout from the roof tops to get a call though, I hate to think of everyone alone going through this too and just thankful we have this forum whereas we can reach out and NRAS. Thank you again xx
So sorry to hear of all the stress you have had on top of your RA and lung problems. I worked in the NHS for 30+ years, 15 of them as a complaints and litigation manager. I agree with Haz and would contact PALS in the first instance and if that fails then write to the Chief Executive of the Trust. He/she is ultimately responsible for the services the Trust provides and the buck stops with him/her. They also need to know where services are failing and are substandard, you will be helping the Trust put right what's going wrong. I used to do a board report every month about each complaint (anonymised) and the action taken as a result. The board were quick to challenge anything they were unhappy about and it certainly focuses the CE and staff's minds on sorting out shortfalls. Hope things soon improve for you.xx
Thank you for your good advice x we have contacted PALS today but then I had a call from Rheumatologist finally I've only been trying to speak to him for 3 months..but he's finally rung and prescribed some oral steroids for the time being. Thanks again xx
They have rung this morning and taken some details from me, I've had people fighting my corner for me but I dread to think of anyone going though this alone with no support it's been bad enough for myself and husband seeing me like this.. so that is why I have full details to PALS this morning even though I had a call yesterday...as communication does need to be improved even taking into account how busy they are..if other departments at the hospital can manage it surely they can. X
A very big thanks and gentle hugs to everyone who replied to my post with advice and support I really do appreciate it ❤️ After a email to my a consultant stating I am having trouble coping with the pain and my husband also ringing the Hospital, I finally had a phone call this afternoon. I fully understand the lung issues and that bugs can lay dormant gor a long time not really giving any symptoms but investigations still need to be done if I need treatment for it. He has given me a 4 week course of steroids to tide me over so I'm really hoping that this will ease the inflammation until I can start my medication. Thank you again you are all wonderful xxx
Great! Glad to hear you’ve had a result albeit after a huge effort on your part. Wish you all the very best and hope the steroids will work their magic and bring down your inflammation very soon. And breathe………..😍
I am a bit late to see your post, I just wanted to say ditto to all that has been said above by others. Keep pushing for better care. Best wishes to you.
Hi , I have the same as you regarding the lung disease, I was on MTx at the time , I’m now on Benapali, my friend also has thus lung problem and I feel this is side affects of drugs , I was shocked when they told me about my lungs , I now do breathing exercises sometimes when I sit , or go to bed which I think as helped . I have RA , and Osteoarthritis, fractures in spine which I was left over 3 yrs because of Covid, now it’s too late to treat my spine as it gone into a curve , plus I have lost nearly 4 ins off my height. I get what you saying about the consultant, sometimes I feel we are just left in the dark with very little support, this disease can be incredibly painful, it can make you depressed, I only say when you have bad days rest up , good days try and get out with friends. I think it’s good if we can off load to each other , as we are the only ones who know what we going through. 👍
Hello, oh you sound like you have really been through it too and I'm sorry to read that. You're right in saying that this disease can be incredibly painful, I've not known a flare like this one before just awful but it is has been over a year since i last had my Rituximab infusions so unfortunate my lung issues timed with that . Were you told your lung issues were caused by your medication? They first said mine was interstitial lung disease but now saying a possible A typical infection with some airway disease whatever that means I've still not had a full diagnosis and waiting for the results from my Bronchoscopy, Respiratory have said No to RA meds at the moment but I'm ok to have steroids thankfully which were prescribed yesterday.
Wishing you all the very best and thank you for replying xxx
hi, just to say steroids have always been brilliant with me when I’ve needed them. If they work for you, should start kicking in in about 3 days…. Good luck with everything. it’s not easy, really feel for people in other countries where there is literally no help at all… unimaginable 😔
Hi, This is good to hear even though o still have not got my prescription yet ! 🥲 comparing to Respiratory who I'm also under, are much more on the ball and efficient and both at the same hopistal so there is some definite issues. Absolutely I agree with you, and for all the people struggling on their own with no one to fight their corner for them when they feel like giving up, this is why I'm so thankful for this site and you all. Thanks for replying
In late 2020, I developed shortness of breath, initially thought to be due to my asthma. Changing meds didn’t help, so I had a HRCT which showed pulmonary fibrosis. My rheumatologist called and asked me to stop my MTX, but allowed me to continue my biologic. I’d been referred urgently to respiratory, who thankfully seen me within 2 weeks. I seen a wonderful lady, who explained that MTX causing lung issues is very outdated and based on weak evidence, and that stronger recent research, shows it delays the onset. She insisted I restart the MTX, and informed my rheumatologist she’d recommended this. I had my medication adjusted, and although I still get breathless, especially stairs or inclines, I’m quite stable. I have yearly lung function tests, which she tells me are not worsening. The early days, I worried about the future, especially when you read prognosis online. However she assures me that info is outdated now, and certainly things haven’t worsened in the last 3yrs. I hope they resolve things for you soon, and find a med you can take to control your RA. 🤗
Hi, Thank you for you reply and sorry to read that you have Pulmonary Fibrosis , do you mind me asking if they know what caused it if it wasn't MTX? The lady who did my breathing tests told me 40% of their referrals are RA patients so it does seem quite common for our lungs to be affected on some way. I'm glad you haven't got worse and seem stable, yes it's frustrating not having my RA Meds which I was supposed to start in December but hopefully won't be too much longer and at least I will have some steroids. Thank you again and all my best wishes xx
I have ankylosing spondylitis, and it’s a potential condition from that, it’s not only those on max who get PF. I went 25yrs with uncontrolled inflammation which she says won’t have helped. By the time they diagnosed my AS, my ribs and SI joints were fused. So I have no chest expansion, so my lungs don’t fully expand. I also have pockets of Atelectasis, which is areas of collapsed lung due to the lack of expansion. But life goes on 🤪👍
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Feel like I have completely failed now and am so low
I feel like having a good cry....
Sick of chasing my hospital
Feel like giving up on drugs.
