Still experiencing problems with not being able to access posts to reply .. sometimes I can sometimes I can't. Sadly still experiencing a major flare despite asking for oral steroids at my second infusion two weeks ago. I had to type and document all that had happened and ask the consultant to read it as she visited me whilst I was having my infusion. She was not overly pleasant and seemed to still be of the mind she wanted to let Ritiximab run down on me again next time and not a pre-empt of it. I know one has to estsablish a pattern but I go downhill so fast and get so many problems and see/feel joints such as fingers being ravaged/distorted .... horrendous as I am an artist but horrible for anyone to experience this. My fingers are out of alignment and I now have to wear finger splints.
Surely I know I when I go downhill badly. As I flared at 10 months but was told to go longer .... I said I could not face it again .. being bedbound/housebound a fourth year next time for months on end. I'm alone 15 hours a day weekdays. Also told my consultant my morale was rock bottom having lost my Mum in March so for all this to happen was destroying me. Blanked. I don't want any 'there there's' or sympathy .. just to be taken seriously. Some proper help to let me live. Not just cling on. In 2013 awaiting Enbrel/bad communication/hospital mix up; last year six weeks awaiting Rituxi start, and now this year letting it go too long before repeat (14 months) and six week infusion clinic wait. I've got fresh and old joint damage widespread as a result. Could not get up from bed unaided or downstairs for 10 days. Not been anywhere except hospital for weeks.
Abysmal times. I feel a shadow of myself .. anxious, shaking and no trust as half of the staff say we will phone you and have no intention. I made three requests to bring a knee injection forward or put me on standby for cancellation but ... it will be 6 weeks when I get in in August. She was a bit more keen to help at first and made some good efforts and a quick clinic review and injection last month, but now ..... I've always been polite and not a nuisance. My close friends tell me I need to be a nuisance! I'm being pushed to the bottom of the pile. I'm professional and scholarly in my approach and I don't think it works well. She then said I could be pencilled in the diary for 9 months. I need to ascertain they have done and send a letter. I have lost trust. I asked her how come a woman I sat next to the first infusion was pre-empted, and put in the diary for infusion every six months? I was blanked. Also had to work hard to get her to let me have Enteric Coated steroids. Why is it such a fight? She said .. We don't give EC usually as more expensive. I said I would get my GP to prescribe but the relented. She didn't discuss steroids more than give me the script. Have been anxious to take as never done before. It needed to happen so I could get out of bed.
Two weeks ago before I was given oral steroids, a desperate request and phone consultation call to my GP prompted an emergency script for Oramorph to let me (and therefore let my husband sleep .. he's desparate and stressed from work and to be honest losing interest in it all) but it hasn't given me much pain relief. It did knock me out so relief for a few hours. He is a very good doc and supports me and he did phone my consultant so guess maybe she did not like that. I've been on Prednisilone for two weeks now as follows: Instructions: Five days a 20mgs; Five days at 10mgs; Five days at 7.5mgs; Five days at 5mgs; MISS A WEEK ??; Five days at 2.5mgs. I'm on day three of 7.5mgs at the mo. I felt major benefit next day on starting at 20mgs and had much relief and little flashing pain ... very wobbly on walking with 2 sticks as my muscles have wasted and my feet/ankle are bad due to not getting my orthotics and podiatry fiasco, but as soon as steroids kicked in I could go up and downstairs on 20mgs and 10mgs. Now I've dropped to 7.5mgs these past two days it's flaring again and my backs of knees' soft tissue are rigid and so are my hands .. both RA flare telltale areas for me. I despair as my consultant says by the end of this course of Pred I should be feeling Rituximab working well. No ... too early. I know last time it was 8 weeks and it is only two weeks since my infusion so I am going to be left with a big gap. The nurse actually disagreed and said it could be longer for me this time for Rituximab to effect ... Can be up to four months as have been told before. No guarantee just because the consultant says it should be working after a month it will. I politely said the manufacturer's website said 50 days before you START to feel benefits on average. I agree.
I would ideally like to continue a holding dose of Prednisilone. I can't go back existing in awful constant pain and immobility in bed .. I have even thought of buying some bedpans I feel so worried I am alone and can't get up. I couldn't hold a cup or pick up most of my food or use a knife and fork. I hope my GP can support me when I go tomorrow. I have never been so upset and disappointed and disillusioned. I never thought I would end up on all these extra potent meds and feeling worse and more joint damage once on Rituximab. All the good work ~I did and effort to get fitter and stronger last year and commence Rituximab has been erased.
Apologies if I sound down and disappointed. I think anyone else would be too . I tried so hard to request a plan so I did not suffer again as before. I was doing so well before on my first duo of infusions. I will ensure the letter I gave to my consultant goes on my file.
I hope I can access your posts from before to reply to your issues. Still playing up for me when I try. I thank you for all your support. Means so much. NK xx
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NeonkittyUK
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First of all I’m so sorry you have to live in this nightmare, I’m glad you documented everything and made the consulatant read it. Don’t apologize for being down and disappointed. I think you’re actually really doing more than many people could while dealing with so much pain and incompetence and anxiety.
I know what you mean by not getting anywhere by being polite and edcuated and reasonable..I’ve never been in a situation as bad as yours but whenever I had issues with my hospital (thankfully nowhere near as serious) I never got anywhere until I literally brought the place to a standstill. I’m not proud of it but when I get anxious and have panic attacks (which happens if I feel that everything is beyond my control in the hospital) I’m not really reasonable. I’m not suggesting you do that but I agree with your friends. It aso seems you have a very good GP who is willing to fight for you ?
I am a bit concerned about the instructions to miss a week on your oral steroid regime ? I am not medically qualified but this doesn’t seem right to me. Maybe because it’s a short course it’s ok ? I guess suddenly stopping is more of an issue if someone’s been on steroids long-term. I think you should be allowed to continue the steroids for a bit, would your GP decide or is it up to the rheumy (who sounds like a stupid cow if you ask me !!).
All the best of luck for your appointment today xxxxx I am so sorry I can’t say anything useful but I keep thinking of you and am seriously considering getting a few voodoo dolls for all your incompetent doctors and medical staff.
Just can't get anyone to advise me from hospital till Tuesday, Cathie but GP said to keep on 7.5 till spoken to Rheumatologist. I can imagine she won't be happy I went to my GP to say inflamamtion asnd pain breaking back in but I can't help that. I am desperate if the Rheumy could only see. xx
Yes voodoo dolls an idea ..... The Prednisilone instructions are across 2 boxes and overlap and there is not the 5 days at 5mg instruction on the 2nd box. Will try to post box covers but having some issues opening posts still on here. Doc said if I can't go below 10mgs without flaring I need to be bridged longer on 7.5 holding dose towards Rituximab kicking in in about six weeks, I pray. I need to inform her of that. Thank you Christine and I am thinking of you and hoping that job is yours! Much love and hugs. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Is there any chance you can change health authorities? Or consultants? If not you need to be more forceful when you see them. It's hard to do when it's not in your nature, but it may work. I was treated like scum by some of the medical staff, until I said no more! I still don't like the specialist nurse, she's a bit ahead of her abilities, but I will tell her to back off when she's assuming I won't do something when I actually CAN"T!!. This is your life, and you need to be treated with respect.
Get to your GP and ask them how to approach things differently. Somethings may not be changeable, the Rituxi is often limited in health authorities, and there is a waiting time. I had to wait months for mine, and I only got in as I rang and pushed for an appointment. It's expensive stuff, so they don't use it freely. I too think you need a better dose of steroids, and they're moving you down the doses too quickly (my opinion only and I'm not a doctor).You also need to check about the steroid reduction, I know they're not so worried when reducing short courses, but it needs to be checked, and ask why there's a gap (as well as the dose that is obviously not working for you).
Remember Rituxi is not a steroid or anti inflammatory, it takes weeks to work, so you need support until it kicks in. It took 5 months for me before I managed to wean my self of the steroidal support (the consultant was shocked that I'd managed, even saying most people don't get off them).
I really hope you get some support, you have my best wishes and support, but it doesn't help to stop the pain.
Yes SDM I have to think of this when I feel a bit better. I have done everything in my power to be efficient and pre-empt my delay and situation but still they delay in getting back to me. Or are difficult. I couldn't have done more to help my case chasing it up and writing and asking to be put on standby etc, and told my consultant face to face when having my infusion, I can't go on like this each year as I was left 2013 and 2014 awaiting meds for six weeks, but think I need to get my partner in with me next review as support ... after all he can hear what they are saying so if they don't deliver on promises etc. I also gave her a letter to read and put on my file documenting it all and how I felt and my request for oral steroids, when I went for my infsusion.
I get the feeling they do not want me on steroids for more than a month , but I need to do whatever it takes. For goodness sakes I would not be on them unless totally necessary. Who wants to be on oral steroids? I am on four lots of analgesics etc due to delay in my infusion. That is going backwards big time.
GP gave me a script for a month's holding dose of 7.5 and said if you can't taper more yet then you can't, Too soon, and need to bridge the gap to Rituximab kicking in. Said I should let Rheumy know (who is away till Tuesday.) I don't think she will let me go to two months on them let alone five. I am glad you could do that and also get off them.
You said it perfectly ... it is your life and you need to be treated with respect.
I too thought this was quick... the tapering of the dose.
Thank you for your support and kind wishes and I am replying to all the posts below asap. Thank you all. NK xxxxxxxxx
Oh Julie, I don't know where to start & time poor just now but I just want to say for now ask your GP if he'll reinstate your oral steroid full dose, stop tapering, you obviously can't go below 7.5mg. Your GP can sanction this at least but I think I'd be asking for PALS to intervene 're timing of your rituximab. You know your body & when it needs it & her reaction to the 6 months woman just isn't acceptable. xxxx
I just want to send you a hug. Don't give up. Why does it always have to be an uphill struggle to get what you need , this disease is bad enough without the support and care from the professionals. Hope you get some relief soon honey.
So sorry you are having to go thro' this. I had similar problems with my ra, because I cannot take anything except leflunomide because of my lungs. This does not work on it's own so I have been on steroids for years. My maintenance dose is 7.5 mg. but my rheumy lets me increase these to 10mg if I need to, but see him if I think I need to go higher. How far away are you from another hospital? You have a choice now as to which hospital you go to, and I would definitely be changing from the one you are at.
I am so sorry you are having such a bad time, and that your consultant appears to be more of a bean counter than a healer. You are experiencing very real problems and I am not surprised they are getting you down.
Your consultant needs to make you a partner in clinical decisions about treatment and management, and at least be clear if the decisions made are based on need and efficacy or cost. You can then decide if this is the right consultant for you- they do seem to differ, and I agree with your friends: even the best seem to assume you are ok unless you make it very clear that you are not. This does not come easily I suspect, as it sounds as if you are more used to presenting a reasoned argument and having an appropriate response!
I wonder if taking along a friend at your next appointment, making more use of the specialist nurse (mine does seem to have some influence on outcomes) and perhaps investigating a second opinion might be of use?
I truly hope that you find a way of improving the situation, and wish you a better day. Take care x
Hi neonkittyuk,
so very sorry to hear what a terrible time you are having. Please do call the helpline and talk to us about possible things that you may be able to do or just for someone to talk to and listen. You can call us on:
I'm so sorry to read this. A little like my experience last year. I wont go into that except to say that I asked around people living here and identified an effective rheumy in the same department. I had a private appointment with him in September (still havent been sent a bill...) and I'm now on his books. He put me on celebrex, then rituximab and he seems to think six monthly is the norm.
Would you consider trying to do something like this? Being blanked is not good, and trying to save money by eking out your infusions is a false economy - if that's what they're trying to do.
Not sure what else to say except that you're not alone. Its horrible to feel hung out to dry like you sound. There are good rheumys out there.
I'm overwhelmed by your kindness and support everybody. I've had a little cry but what's new these days. I will reply individually tomorrow as had a difficult appointment with my GP who has been talking to my consultant ........ She apparently says it is ALL triggered by my knee which needs replacing and I have not been able to address this recently due to caring for my Mum the past two or so years and her passing away recently .... her decline in Alzheimer's made me scared to have an op and that I would be immobile after an op and worried her final decline could come when I could not help or care for her. I could have gone earlier for replacement but was told as it did not stop mobility or function much to keep going and think about it and plan for it, by a physio. My state of mind has been fragile as you can maybe understand.
Well, my knee has not troubled me whatsoever .. not a peep ... no need for even a humble Paracetamol for a year ... since Rituximab 2014, so to me it is obvious my delay in med is why I flared dramatically all over. My plan was to have another Rituximab pair in 2015 ... as in the ones I have just had, get stronger as I was doing and be fit enough to say yes I am ready for an op which I hoped would be early 2016. (I can have an op on my bupa but not infusions of rheumy clinics. ) I do feel the rheumy will oppose bupa too. If I can hardly walk on two sticks now how can I do so after an op. Need to get stronger for it I feel. Also my hip needs replacement but it gives no pain at all ... just loss of dexterity and movement for some things. Always been told by my previous doc if it doesn't hurt and doesn't keep you awake ... leave it. Plans ... never go to plan but whatever I have done or have not done I was doing great on Rituximab till repeat needed! FACT!!! I have to stand my ground and say I was doing remarkably well until the delay. Moreso I have to make my own plan and see if they can work with me. Bridge this gap.
I feel better reading others here have done the steroid bridge till meds kick in and are doing so. I felt as though I was asking the rheumy for gold nuggets not steroids and I have to ask all the time. Even had to chase my own clinic infusion diary date as I did not receive a letter of confirmation and I phoned five days before and was told by infusion clinic I was not in for infusion?? Despite waiting seven weeks. I nearly crumpled. I had to chase round all over to be told I had not been transferred to the clinic diary. My med was ordered and my space was booked. Then once there a my second infusion I had to keep asking for my B cell tests and the temp nurse from another hospital left early and did not do them ... despite me asking twice, so the main clinic nurse had to to get someone in ... had I not been on the ball I would not have had my blood tests for B cells done. I know there is human error but ..... I'm getting a bit exasperrated.
Doc today told me to stay at 7.5 Pred for a few weeks if I am badly flaring still. I don't understand the miss a week? I thought too it was a fast come down/taper the rheumy gave me. I don't want to phone the consultant but could ask one of the rheumy nurses. I am scared to be on 7.5mgs for a couple of months. Is this very dangerous? I don't see much alternative to patch me up till Rituxi kicks in. I've no prior experience of oral steroids. Not given any advice either at the time of being given the script. My head in spinning. Once I have had a good sleep I will reply to you all and yes Beverley, thank you, I would welcome some advice and will phone later in the week.
My plan? I try to have one always. To be positive ...To bridge with oral steroids towards September when Rituximab should be working ... review is early October with Rheumatology ... hope it is not her ... knee injection on 18 August so will see someone else .. probably a Registrar about where I am at, as they always ask how you are and make notes whilst injection taking immediate effect. Pray Rituximab is working soon. Also get fit and strong to be confident enough for an op early next year. I feel the consultant is so mad and frustrated I won't rush into surgery immediately she is taking it out on me. I am very aware of her "disposition" when she sees me. Sadly. I can't undo what wrong has been done but I want to ensure it isn't going to be a cause of groundhog day for the 4th year in 2015.
I'm overwhelmed by your kindness and support everybody. I've had a little cry but what's new these days. I will reply individually tomorrow as had a difficult appointment with my GP who has been talking to my consultant ........ She apparently says it is ALL triggered by my knee which needs replacing and I have not been able to address this recently due to caring for my Mum the past two or so years and her passing away recently .... her decline in Alzheimer's made me scared to have an op and that I would be immobile after an op and worried her final decline could come when I could not help or care for her. I could have gone earlier for replacement but was told as it did not stop mobility or function much to keep going and think about it and plan for it, by a physio. My state of mind has been fragile as you can maybe understand.
Well, my knee has not troubled me whatsoever .. not a peep ... no need for even a humble Paracetamol for a year ... since Rituximab 2014, so to me it is obvious my delay in med is why I flared dramatically all over. My plan was to have another Rituximab pair in 2015 ... as in the ones I have just had, get stronger as I was doing and be fit enough to say yes I am ready for an op which I hoped would be early 2016. (I can have an op on my bupa but not infusions of rheumy clinics. ) I do feel the rheumy will oppose bupa too. If I can hardly walk on two sticks now how can I do so after an op. Need to get stronger for it I feel. Also my hip needs replacement but it gives no pain at all ... just loss of dexterity and movement for some things. Always been told by my previous doc if it doesn't hurt and doesn't keep you awake ... leave it. Plans ... never go to plan but whatever I have done or have not done I was doing great on Rituximab till repeat needed! FACT!!! I have to stand my ground and say I was doing remarkably well until the delay. Moreso I have to make my own plan and see if they can work with me. Bridge this gap.
I feel better reading others here have done the steroid bridge till meds kick in and are doing so. I felt as though I was asking the rheumy for gold nuggets not steroids and I have to ask all the time. Even had to chase my own clinic infusion diary date as I did not receive a letter of confirmation and I phoned five days before and was told by infusion clinic I was not in for infusion?? Despite waiting seven weeks. I nearly crumpled. I had to chase round all over to be told I had not been transferred to the clinic diary. My med was ordered and my space was booked. Then once there a my second infusion I had to keep asking for my B cell tests and the temp nurse from another hospital left early and did not do them ... despite me asking twice, so the main clinic nurse had to to get someone in ... had I not been on the ball I would not have had my blood tests for B cells done. I know there is human error but ..... I'm getting a bit exasperrated.
Doc today told me to stay at 7.5 Pred for a few weeks if I am badly flaring still. I don't understand the miss a week? I thought too it was a fast come down/taper the rheumy gave me. I don't want to phone the consultant but could ask one of the rheumy nurses. I am scared to be on 7.5mgs for a couple of months. Is this very dangerous? I don't see much alternative to patch me up till Rituxi kicks in. I've no prior experience of oral steroids. Not given any advice either at the time of being given the script. My head in spinning. Once I have had a good sleep I will reply to you all and yes Beverley, thank you, I would welcome some advice and will phone later in the week.
My plan? I try to have one always. To be positive ...To bridge with oral steroids towards September when Rituximab should be working ... review is early October with Rheumatology ... hope it is not her ... knee injection on 18 August so will see someone else .. probably a Registrar about where I am at, as they always ask how you are and make notes whilst injection taking immediate effect. Pray Rituximab is working soon. Also get fit and strong to be confident enough for an op early next year. I feel the consultant is so mad and frustrated I won't rush into surgery immediately she is taking it out on me. I am very aware of her "disposition" when she sees me. Sadly. I can't undo what wrong has been done but I want to ensure it isn't going to be a cause of groundhog day for the 4th year in 2015.
I also did not get why you miss a week at 5 mg steroids I thought they has to be tapered slowly , I just tried to find out why on internet but could not find out anything. Hope you start feeling a lot better soon x
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