Delay in repeating Rituximab and total relapse :-(

Hi folks I'm sorry I've not been on ... Sorry for my absence much of which due to my laptop being out of order. Just been looking at recent posts and catching up a bit.

I've been in bed virtually at a standstill and mostly housebound since mid June. Seized and flaring the worst I can recall in 20 years of RA. My legs will not support me to walk more then a few yards at present as there is so much inflammation especially behind both knees in the soft tissue. Joints that were usually strong and trouble free have come under this vicious attack and return of uncontrolled RA which is like a raging wildfire everywhere. I have watched new damage and feel the RA attacking all my soft tissue and have widespread nerve pain and seizing, and distortion in my fingers and I am struggling with dexterity. It's all gone pants due to not being able to get in the rheumatology infusions clinic for Rituximab as there is a six week delay as the norm for when you start to flare and when you can get in. I have been very anxious about this since last year in my Rituxi start in April and voiced my feelings and was told .. You yell as soon as you start to go downhill and we get you in as soon as we can. To have been doing so great on Rituximab and for 10 months my bloods showing hardly any inflammation and no need for any oral analgesics/anti inflams for a year since my first duo of Rituximab and very good mobility and no need for any steroid shots .... I would say that was a Rituximab success.

I understand it is difficult to know when you will need repeating as everyone is different but in April when I saw a rheumatologist and showed them my hot swollen knee and red swollen little fingers and my ESR had raised by 5 ... It was to me a major sign to repeat ASAP but they said I should wait a bit longer. I was already at a year then. That wait a bit longer has rendered me an invalid in struggling to force myself up and to the bathroom. I have not been downstairs since Saturday. Out only a hand full of times with my husband assisting in five weeks. No anniversary hols or any hol or activity.

Once I did yell in May when I fit widespread problems and seizing/swelling and got the biologics nurse to our me in the infusions diary it was almost seven weeks to wait .. Of absolute hell to be honest... and I am no stranger to RA pain but his has had me reduced to tears every day and each morning I wake with a massive anxiety attack and palpitations about facing the day. This is not the me I know but I have been reduced to a person just existing and trying to last out till Rituximab kicks in again. I was given an IV depomedrone in the buttock ten days after my call to ask for help which was a month ago or so but by then RA had started to run riot I was offered to try get me in at another hospital but as I had a other pressing unrelated appointment at the time that would have been and I thought the depomedrone would last me I said I wild wait till early July for my Rituximab. Normally a steroid shot would last me much longer. I made the wrong choice there and ended up begging .. In tears for a steroid in my knee as it had ballooned and was dangerous as it made me wobble and unstable going downstairs. So they have tried to help but I feel I have to almost meltdown to get a result and they admitted to being grossly under resourced and stressed.

The knee steroid took the swelling down over the knee and removed pain but inflammation is back behind it again now. The knee steroid was two weeks after the general one and two weeks before my repeat Rituximab. My husband for the first time ever had to take me to clinic as I collapsed getting out of his car. He had to run and get a wheelchair for me to arrive in ... A first. I was in agony. The infufions clinic staff and nurse are lovely and their hands are tied by the lack of resource and only three spaces for Rituximab in the ward. The IV Pred with Rituximab lasted for three days with much welcomed relief then bam, back to crazy pain and stiffness and to being stuck in bed. The effects of all this have made me a nervous wreck and I have little confidence in the system/lack of resource. During the first duo of the repeat infufions last week a consultant came to see me and acknowledged I had been left too long and I begged I could be given Rituximab next time to preempt rather then to react to a downturn as obviously i deteriorate so rapidly. I could see it did not go down well. I emphasised my terrible state of mind and immobility. I asked for an appointment for my other knee injecting as it was massive and swollen which was examined and was told there is a five week waiting list for injection clinic???? No way I said I could wait and let it attack my good knee usually with no problems so I asked if I could get an appointment privately. Still waiting to hear but I will chase next week when I have my second Rituximab as I know you need to leave some space between steroids but don't want to wait another four weeks. Last year I had similar with awaiting Rituximab - general steroid shot , then my infusions then two weeks after both knees injected. Those shots tided me over till Rituximab started to work two months later. To have gone six weeks of madness this year and last when awaiting starting the med being bedbound, and then in 2013 a major mix up re starting Enbrel resulting in Immobilty and being in bed a month. You'd think they'd fall over backwards to ensure it did not or does not happen again? It falls on stoney ground when I say I've been here twice before. I'm harder to treat like this and sustaining more damage day by day. My partner says me being patient and articulate has got me nowhere and the fact I struggle there under my own steam and unaccompanied for clinics usually makes them think I am in a better state but surely they have eyes? They are just so under resourced and so many patients but are they all in bed in agony for months?? No I am sure not. I never like to compare myself or say I deserve more then the next person but I deserve more than is happening.

I have never had a pain management session or advice on analgesics apart from my GP. I have phoned today to arrange to speak with him tomorrow with a view to reviewing what I take - Fentanyl 25 mcg patch; Paracetamol capsules 500mg and Nurofen Express capsules 200mgs. They only take the vey edge off it. i need some review and advice if I can do better? I seem to have fallen by the wayside by having very stressed and under resourced people who I am sure don't like to work this way but none of it helps me.

The biologics sisters are excellent but can't do more then their department allows. The one I see says I need to be put in the diary for repeat at 8 months regardless and I hope the consultant next time does not challenge this. I feel I cannot cope with a fourth year of madness next time. I have little trust in this wait and capitulate system.

In my infusion clinic I sat next to a lady who was in for Rituxi and she says she had hers preempted every six months as she could only just last that long (NICE guidelines state 6 months in the minimum you can have Rituxi repeated at. ). When she was told my scenario by myself and the sister she was shocked. I am hoping to get my GP to write a letter of support to preempt rather then react slowly and let the RA come raging back. I also think I need to put it in writing my fears to be left to deteriorate.

I do not know what they will do to tide me over till Rituxi starts to work it if I can't get this knee injection. I have seen posts before saying oral low dose steroids are given when the iv ones or joint ones don't last and fade due to rampant RA uncontrolled. I know a couple of Rituxi vets and their experiences but am I unfortunate here in my area and treatment or is everyone else hacking to resort to meltdown to get a result? I did not contact them for a year apart from routine clinics you have to attend etc so I do not consider myself a nuisance. I am very polite and articulate and think maybe some who are not who get dealt with first so they shut up. I don't want to point fingers as some staff have been very helpful but some are doing an Ostricht.

Any thoughts .. Similar experiences or advice would be greatly appreciated. I have never felt so depressed and I am usually such a strong person but this time I am not. Sorry for the length and disillusionment. I keep trying to focus each day on something to get me though it all. My husband is trying to help but has to work. He is very heartbroken too.

Thank you. NK x

43 Replies

  • Hello NK...I am so sorry that you are having to go through all of this. I can't offer any advice unfortunately... being fairly new to RA and Rituximab other than taking yourself to the hospital and refusing to move (not that you can much 😧) until they help you!! I do think you have a very valid point though that in being a nuisance and shouting the loudest...gets you more urgent by being nice and a trooper even though you are very obviously struggling pushes you to the bottom of the queue or not taken seriously! Hopefully in the future they will give you further infusions at 8 months. You have been very helpful and supportive to me especially when I was very anxious about my first infusion, I truly hope you get some relief from your pain very soon and that you get some advice on what to do. Lots of love xx

  • Thank you 3LB xx. I don't know what to do? I can hardly pick up food/can't use a knife due to my hands and fingers being rigid or eat easily due to it being in the back of my jaw too. I have never felt so disgusted or let down. I hope Rituximab is going to work wonders for you. xx

  • I just saw your reply re another post and you said you'd had your second of the duo. You asked if I had any side effects? No just a but tired but I also put that down to the Piriton they give you pre Rituxi. I hope it is not too long before you start to feel very improved. x

  • Thank you for your good wishes...I truly hope it works too for me too. You've had some great advice here today and I hope this gives you the much needed strength to fight your corner! Bless you...I really hope you're feeling a little brighter this evening and got some answers to your questions. Xxx

  • I have had some wonderful support and advice thank you and I needed to hear it as I was thinking I was going mad and maybe it was right what they were doing and in my mind I knew what I have to do but it was good to hear it from others. I do not go into near meltdown for no reason. I did not get any response as asked for re the private steroid shot in my other knee but the nurse may but have had chance to tell to the consultant. The GP could not phone me today but got the receptionist to say he will be doing so tomorrow. As for the preempt for next time .. I had planned to ask my GP to do a letter last year but thought it won't happen again! .... I will ask him this time. I will write to the hospital and I have got the complaints procedure document. Very sensibly I will do it but they need to know. I feel just the same - totally locked in pain and day five in bed upstairs. Your kindness and everybody's kindness and help has helped me thank you . xxx

  • I truly believe you will emerge from this much stronger from this even though you probably can't see that at the moment!! Best wishes with have much support from all of us on here...we can appreciate just how bad you must be feeling...and you my dear...are defitnetly not going mad 😊. Please keep us updated xxx

  • Thank you again and I will never let this happen again .. I will be shouting to my MP. xxx

  • What a dreadful position to be in! I completely understand how this has devastated your life, and scarce resources or not, this is unacceptable in a 21st century advanced country. Sounds positively medieval! I would write to your hospital PALS and explain the history and the misery that has caused and ask that a different system be put in place for you for the next cycle.

    (My rheumy doesn't deal with pain relief at all, says that's for my GP to sort out)

  • Thank you HH. I got a call from my OT today as I had asked to rearrange an appointment and she said I had to complain or they won't ever get any more resource.

  • Hi NeonkittyUK

    Nice to see you back on here, but what an awful time you're having/have been having. I can only hope that the next infusion will happen at 8 months, but be sure to fight your corner and remind them of what has happened this time and last time, as it's just not acceptable. It might be okay to wait a little longer if they could get you in the moment it got worse, but when there is such a delay fitting people in this doesn't work. I would also think that those early signs of inflammation were a good indication that the drug was wearing off.

    I hope you feel much better soon.

    Please feel free to call the helpline if you ever want to talk things through.

    Kind regards



  • Thank you Victoria for your support. I may call soon and ask something but am waiting for these people who promised to call .... and never have ..... Like Groundhog Day. :-(.

  • I contacted my rheumy department in January as my rituximab was wearing off and I was in a lot of pain. Just had my second round of treatment last week. I also had to constantly contact people over the last six months about every aspect of it, I was told I would receive blood forms, appointments and phone calls, none of which materialised so I was constantly having to call and chase things up. It really added to the stress.

  • Sounds all so familiar I am sorry to hear your story. It is hard when you are expected to chase things up all the time when you are so unwell. I hope yours is soon working again. If I had had to wait any longer I would have been an inpatient I am so compromised and I don't know how you've lasted out. So sorry. Good luck ;-) x

  • You certainly have to be a very squeaky wheel. xx

  • Hello Neonkitty - I am so angry and sad to read this. I really thought they wouldn't dare mess everything up yet again!!!! I am lost for words, I really don't know what to say just that you deserve so so much better. That this can happen in the UK in 2015 scares the hell out of me. It's really terrible that such kind, polite and strong people such as yourself are just left on their own. I wish there was anything I could do! Lots and lots of love and I hope this nightmare is going to end soon. xxxxxxxxxxxxxxx

  • Thank you sweet girl. Polite and articulate and being a trooper have got me nowhere. I just lost all faith and trust and yes they did try to offer an alternative and give me the steroid shots but if anything goes differently to their protocol and you nosedive they don't seem to be able to react enough and this is now dangerous especially all can see in my hands. Such deterioration and damage and as an artist this is terrifying me. I did not imagine they would let this happen again. :-(. Thank you for caring. Much love. xxxxxx

  • What I just cannot understand is why they think it'll save them money by not treating people propely or not treating them at all. So they save a bit of money on a med or a procedure that doesn't happen but then they will have to pay lots more when they've damaged people enough that they can't work anymore or have other serious problems. xxxxxxxxx

  • My consultant said .. We like to give you as little as possible ... And I do think that means for your own protection of the med but if NICE state it can be repeated after six months and I had gone over a year then ......

    GP phoned me with promise to write/talk to my consulant re not being allowed to go so downhill and also prescribed me Oramorph.


  • Oh you poor love Julie. What have they put you through? Once is bad enough & as if you needed that now. I was wondering how you were getting on never thinking you were having such a rough time & now feel awful I didn't make contact sooner. I really hope things start moving but they need to listen to you & react when you tell them it's time, let's just hope it's not within 6 months.

    I was talking about Rheumy services in the UK with my GP on Tuesday & she said that two departments which are notoriously poor.... Rheumatology & Neurology, disorganised at best & she feels the problem stems from the top, the Rheumys & Neuros. She still does some hospital work when needed, A&E mostly & says she hates it if a patient needs referral to R or N. She knows me well as she's a friend as well & knows the treatment I received in Spain as she visited a few times when we lived there so has an idea of how difficult I've found it being seen here & how different I am to then. Could you talk through pain relief/oral steroid treatment with your GP? Anything to ease your pain if your current ones aren't doing it for you.

    Anyhow, maybe when your goes up 5 hopefully they'll listen but I do think you need support, either your GP or your husband if at all possible. It's unfair to think you've to fight your corner when you feel so ill, it must be really hard for your husband to see as well.

    I really hope things start moving. Maybe you could contact PALS, I assume your hospital has this resource. It needs to be recorded at the very least, otherwise things won't improve for anyone will they?

    Seems trite to say but take care. P xxxx

  • Thank you NMH I was meaning to be in touch with you and a few others but with my laptop going mad and all with my Mum, time ran away. My husband says he is heartbroken. Yes exactly why I am wanting to speak to my GP re pain relief and oral steroids to maybe tide me over. I've never been given then but would I be allowed after having the steroid in my right knee two weeks ago and a general one five weeks ago? (Had hoped that right knee steroid would calm the rest of me down but the RA is raging and overtaken the steroid again after five days - unheard of usually they last months and calm all of me but shows how wild the RA is just now but it did get the swelling over the right knee down and let me bend it.). He may have to investigate steroid allowance for me. Prior to those I hadn't had any shots for over a year. Also are the tablets very hard to come off ? .. even if you have them low dose and shorter term. I've seen people saying on here in the past they have been marvellous for tiding them over. However not without some side effects at higher dose. No one has ever spoken of them at rheumatology to me in 20 years as they go down the injection route. If it is the only thing that can release this seized up agony and let me get out/move even indoors and stop more damage then ? However this why I needed to know if and when a private left knee steroid could be done in the good knee that has now gone mad .. It was fine and now swollen and stiff and very painful. I know GP will say we need to know if a steroid shot can be given to know if we can talk oral steroids short term but if rheumatology won't get back to me re me having a private knee steroid? I've left a message. They have given me a date of 18 August NHS for the left knee when I went for infufion last week. My husband said 5 weeks?!?!? Me too!! I said no I will be bedbound ... And I am. I am trying to find out how much a private shut will be. I think £150 consultant and the same for the steroid. Shame my BUPA does not cover RA meds. I hope you are well NMH and thank you once again. xxx

  • Shot not shut .. Oops

  • A short course of steroids, say a month, it isn't necessary to taper off, I understand you can just stop them. I'm in a different position, my Rheumy is wanting to get me off my maintenance dose deflazacort, only 3mg but having tried to taper it & flaring towards the end of doing so I'm still on it. Need to try to find an alternative for my bone health but she hasn't as yet. It does seem that some Rheumies like yours choose the injection route. My Consulants have previously only used oral but my present Rheumy has given my hydrocortisone in my hand to treat trigger finger & a different Rheumy (the one I chose when using Choose & Book when I first came back to the UK actually) will be seeing me on the 27th to inject my feet/ankles but possibly because I'm only on low dose? Not sure until I see him.

    Five weeks in the position you're in now seems a year away so not surprised you're thinking of going private route but I wonder if that's advisable. I know you're desperate but I'd try to speak with your Rheumy again, or your GP, do you think he'd work as an intermediary for you? Or, is there any proper pain relief your GP could prescribe, thinking slow release opiods, I have BuTrans patches but there are many others.

    I hope the pain eases when you do get sorted Julie. Holding your hand til then. x

  • Just read one of your replies above, so glad you've got oramorph & hope it does the job. x

  • My hubby went to collect it after work so let's hope it helps. Thank you. I would be eased if they could give me low dose oral steroids. xx

  • Thank you again NMH. I hope you get the relief you need in your feet and ankles. Do you have orthotics? I have been waiting over a year for orthotics and shoes and there another sorry tale of appalling mismanagement. Not now I cannot bear it it is so crazy. I need my heels raising so the backs of my knees don't pull so much with the tendons. Hopefully Rituximab will kick In soon and help. I dare not even ask about a huge swollen knuckle at a 45 degree angle and Boutonierre finger and another middle finger a swan neck, both deteriorated since the wait. I have drift and deformity in three other fingers. It is hard you will know when it is widespread and it can deteriorate so quickly. The OT is a shining light and very supportive. Yes my GP is going to intervene all he can and I do have Fentanyl 25 but it only tends to take the edge off. I feel relieved to know children can take Oramorph and I'm just going to take it shortly. I don't know Deflazacort but cort kind of gives it away. I think my rheumy will say I have to wait till 18/8 and then if they stick to they when I ask ... I will phone my GP and BUPA and I will get any private rheumy to do it at any private hospital as it is the key to me moving and getting downstairs as the fluid and swollen tissue is making the keg unstable and it feels like lead. Do you have a biologic? Much love to you and thank you again. x

  • Yes, I have orthotics. I received an appointment for the 27th so will see what he says then. At my last Rheumy appointment I had little to report so I asked her if she would examine my feet, something she's always fobbed me off with by saying it's not in the DAS 28. Well, she looked at them & said how sorry she was for not listening to me before, disease activity (which I guess had been going on for about 2 years) & numerous other stuff so she referred me to Podietry to tackle them. My orthotics need adjusting but I'm with her next Monday for corn removal so she'll see then.

    Raging disease has really had a go at you, you poor thing. They really should be ashamed, the length of time you've been waiting, it's really not on.

    I'm sorry the Fentanyl patches aren't cutting it but do so hope the oramorph does just for a while hopefully. Glad your GP is going to do all he can. Deflazacort doesn't seem to be prescribed as much here. It was what I was taking in Spain & my Rheumy here just reinstated all the meds I was on so it's never been changed to pred.

    It really does sound horrendous & I'm amazed in this day & age it's been allowed to get to that stage.

    Sleep well & I hope you wake feeling at least a teeny bit better, anything's better than how you've been. xxx

  • Thank you again for all your kindness NMH and yes your rheumy should have listened to you about your feet and I hope the orthotics help you a lot. DAS needs amending. The bit of pressing knuckles is barbaric although my more sensitive nurse says no need to press ... I can see! If they were all like her .... ;-) You have also been battling to get your feet sorted out too. I hope your corn removal soon gives relief too. I find wedges are easier for me and about 2.5 inches to lift the heels. I got some soft suede wedges with Velcro straps from Clarks. Also my fave Fly wedge boots.

    I've been waiting since June 2014 for my orthotics ... More farce I'm afraid including podiatrist injuring my knee (damaged my MCL) and then they have broken the orthotics in the making. ???? They want me to go for a plaster cast now. Not now thank you! Abysmal really so I'm glad you are getting yours and hope they help. I've kind if given up. Think I will just ask for the shoes they've made me and a standard inner sole.

    Oramorph sending me to sleep but mad mad dreams but it is giving me a tummy ache but no pain. It is helping a little but a lot of stiff joint pain remains the same .

    My husband asked today if they were able to keep me in hospital so he could have a break he is so stressed. I feel very hurt but guess he is entitled to say how he feels. I've been in bed a week and been doing quite a lot before in the previous month at home so not slacking! He is helpful and practical but he never smiles anymore. He gets so upset if I am unwell that it comes out all wrong. I am going to ask re oral steroids when I go for infusion and I would ask to stay in but I am worried about getting and germs with Rituximab lowering my immune but I'm so seized now I have to be lifted out of bed and I've managed to get myself out until the last few days but it's become that I'm pulling muscles.

    To me it's obvious you don't let a person get in such a state as if affects so many more aspects of their health. My GP says don't leave on Tuesday without seeing the consultant.

    I guess Oramorph let me sleep a bit more during the day so a bit of relief.

    I think I will pack a little holdall bag on Monday as if my husband feels I should be in hospital for my sake as well as his sanity then it might be the answer.

    My friends have been very supportive and some dear family but they are not close by. My poor husband is vacuuming and making dinner and been shopping and cutting my toenails so he is kind but he has a very outspoken blunt streak. He says it will take the rest of the year to come back from this and I agree but I will never let it happen again even if they get nasty at hospital. I hope anyone reading ensures they insist they have their repeat if someone tells them they can wait a bit longer and you have doubts. It's nearly finished me. Ive always been a glass half girl but at the mo I'm scared I won't come back from it.

    My husband bought me a lovely new funky metal and mesh garden bench and big

    padded seat for it

    and I've not been able to get out yet! That is my goal.

    Hope your weekend is a good one and thank you again for your support and advice. Love NK xxx

  • Couldn't agree more about the DAS Julie, don't see it happening though. My feet were always included previously, made sense to me as it's where it first showed itself. That sounds like a catalogue of errors from the word go. But for your Podietrist to damage your knee, that's the limit!

    I'm so sorry your h is troubled with how things are with you recently. It must be so difficult for him to see you as you are & sometimes it's the worry of not being able to do anything constructive for us that brings this anger/fear/worry to the fore. Whatever you decide to do I hope it helps, your relationship is really important. I don't know if it's possible but do you think the helpline could put him in touch with another husband of a sufferer (dislike using it but appropriate I think in this instance) to talk things through? Would he be open to do that, if it is possible of course. I would hope it will be recognised that you need to see the Consultant on Tuesday but I really hope you do. Maybe h will come with you to explain why if you don't feel you'll be listened to? Do keep us updated won't you?

    I hope you get to sit on that funky garden bench sooner than it feels right now. When you do you'll have to post a pic so we know you've crossed that barrier!

    You take care, the only way is up from here lovely. P x

  • I've got major problems with the reply box on the mobile so will just say my hubby is a lovely guy but he's helpless you're right when he can't put it right and yes he is coming with me to take me to the clinic. I can't walk without him and will need use of the communal wheelchair at hospital as I am so slow and it's a long walk to the clinic. I have written a letter to the consultant in case they won't see me and I'm copying it to my GP. If only they could adequately tide me over with as you say low dose oral steroids. I think I am going to get a big no to be honest. My hubby's been out gardening today so if I can

    make it to the funky bench soon it will be nice. :-). xxx

  • Why do they always have clinics way away from the entrances to hopitals? Pleased your h is taking you, off course he'll need to, I wasn't thinking sorry. Anyway I really do hope you're seen, surely once anyone in the Rheumy Dept sees you they will recognise how you've gone terribly downhill. Stiff fingers crossed for steroids for you too! xx

  • I am having infusion 2 on Tuesday and at the first one I was so bad with my legs the nurse asked a consultant to come in and see me whilst the infusion was taking place but it was more about her telling me how under resourced they are but she did acknowledge I was very swollen but I did not feel assured.

    Only a day to wait .. I noticed under my eyes are yellow and purple ... Look like the remains of shiners. Hubby days laying down a lot and not much circulation. So many knock on effects of the delay in the med.

  • Maybe you'll get to see a Consultant again because of how things are, if so grab him!! Also, your eyes, they need looking at & confirmation of cause. You also need assurance this sort of delay will never happen again don't you. Good luck for tomorrow. x

  • Thank you I'm dreading it. I'm sure stress and the lack of sleep and lack of mobility are the eyes but I will bring it to their attention.xx

  • I always mention anything unusual, you never know they might think it's related to something we might not be aware of. I'll be thinking of you. x

  • Wasn't interested when I told her about my eyes or showed her. Not surprised. My under eyes look like I've been whacked still. I will be back to let you know how I got on otherwise which is mixed. Thank you again for your support and hope you are alright. x

  • Ah well, i look forward to your update, though not sure mixed is an indication a terribly productive visit. I'm not too bad this morning thanks for asking. x

  • I'm glad to hear you are feeling alright today and I will reply once I get downstairs to my reading specs. I got oral steroids yesterday but not sure if would have been offered if I had not have asked. Started with first 20mg dose this morning but presume it takes another dose or build up to fell any improvement. Never had oral steroid in 20 years of RA. I will let you how the infusion day went later. xx

  • So sorry that you have had to go through this again, it's absolutely unforgivable. I know that you really could do without any additional stress, but if you possibly can, I do feel that you need to complain, for your own sake, and also for other patients.

    I cannot understand how anybody, let alone professional healthcarers, could treat someone in such an inhuman uncaring way. I feel so angry on your behalf. It's pure negligence.

    I hope the rituximab soon kicks in, and gives you some relief, and that you have supportive family/friends to help you get through.

    Do keep us posted, and take care. Mavis xx

  • Thank you for your kind words Mavis and my OT said the hospital complaints must know as otherwise rheumatology will not get any more resource to help patients.

    I do have friends and family who are supportive but don't live close but here in nras prople understand more of course and can give advice and experience. So that is also invaluable. Some hospital staff tried to help but hands tied. Hope you are well. x

  • Hello and thinks so much again for all your support. I am so grateful.

    I have spoken to my GP this morning who has understood my situation and will be assisting me to preempt this never happening again. He has also prescribed Oramorph as a top up to the Fentanyl 25 patch and Nurofen and Paracetamols although I hardly take the Paracetemols as they don't really help.

    A bit of a dilemma .... I am unsure however (and my GP does not know about Rituximab) if you are required to stop Oramorph the night before my second Rituximab infusion on Tuesday 21st.

    Had anyone experienced this before? Just tried to get through to the consultant's secretary but no reply. She takes the helpline messages so Hopefully she might check they if I leave one now.

    NK x

  • Hi I just tried to leave a comment but it got zapped. My mobile is experiencing difficulties posting here on and off!

    I have been prescribed Oramorph as a too up to try get me through the pain and my GP phoned me to talk about what has happened and will be contacting Rheumatology to emphasise the distress if all they had happened and say leaving me longer with no preempt in Rituximab.

    I'm still the same / bedbound and in the same pain.

    Thank you all again.


  • I'm so sorry to hear about your difficulties. I'm in a similar place which is why its taken me a while to respond. Due for the second pair of ritixumab in mid AUgust but frustrated because I was due for a knee replacement in early July which has thrown a spanner in the works as far as timing is concerned.

    I hope you can get sorted out soon. I think that these new biologics are fantastic but there are all sorts of problems with delays - and the cost ! ! It would be good to see NRAS campaigning for the pharmaceuticals industry to reduce the cost of some of these drugs.

    How have you found rituximab? My experience hasnt been very clear - I got shingles in the middle of these 6 months, and am also battling with severe knee pain while waiting for the op. I've found that the relief has been spasmodic, it has lifted my mood quite a bit and most of the time the inflammation is ok, although I do have very dark days as at present.

    So I dont know if it helps to hear from a fellow sufferer, but I hope they can sort you out quickly. Being ini pain is no joke and can have knock on effects.

    Keep Ok, cathie

  • Hi Cathie I've been wondering how you were going on with Rituxi and yes unless an emergency you have to wait a while after Rituxi so you don't get infection in your wound etc. with the lowered immunity. That has scuppered it for you a bit but hope your infusions give you some strength to get ready for the op.

    Sorry about your shingles. Sounds awful. I am not sure how long you went from first Rutuxi pair/duo till now? I had mine April 2014 and went till April 2015 before starting to flare in my knee and fingers. There were some signs but I was told to carry on!!!! Then a month later .... Too late. They did not do CRP in April but ESR had gone 19 ( met seen high but for me thats good!!) to 25 so it was another sign. As the rest of me was very good they said I could wait. Every joint is now affected and my knees are massive and rigid. Fingers gone crazy.

    After my April Rituximabs I had both knees injected as the king wait to start it .. Another six weeks in bed last year ... Meant I needed my knees doing. So I was not waiting for Rituximab amine to work but about six weeks later I felt a different kind of joint freedom all over. Then it got better and better and no need for oral pain meds or any more steroid shots for a year and all my bloods good so I would say mine was a success. This is why being in bed and inside for six weeks is horrible. The depression as you know makes for dark days. I hope your next Rituxumabs kicks in quick and give you a better relief. I've just been prescribed Oramorph. Good luck. x

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