Spent half a day at the Norfolk & Norwich Hospital on Wednesday, had a chest x -ray, a once over by the Doctor and cleared to have Rituximab. 1st infusion on the 15th April and the 2nd on the 29th April. Will take 6 hours the first time as it is dripped in slowly. Will also have steroid infusion as well to bridge the gap between infusion and it taking effect which I have been told is 2 weeks to 12 weeks and most patients start to feel better after 2/3 weeks. Just had my blood tests done as well. So much taken it's a wonder I have any left! Hubby will take me in for 9 a.m. and then he will push off somewhere and spend a few hours at the coast or visiting a local Rotary club.
I just hope it works for me as can't continue as I am at present in considerable pain, inflammation and swelling of my joints. Having to take Nurofen and Co-Codamol (although that doesn't really help and is highly addictive).
Have the pins taken out of my toes next week so after that, assuming no infection and there isn't at present, will arrange to have a steroid injection to bring down the inflammation. Hospital said they would arrange it for me but I do have to stop the Enbrel again next week because of the removal of the pins, not that it is really doing anything to help. Also will have to stop it 2 weeks before the first infusion, hence the need for a steroid infusion at the same time. Will then be off the Enbrel permanently.
Anyway, wish me luck and I'll let you know how I get on. LavendarLady x
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Hello LavendarLady Great news you've got the green light for Rituximab !!! I wish you the very best of luck and I hope it works for you! I also hope you'll be alright until you get your infusion and the drug kicks in! Love, Christine xx
good luck. i enjoyed the infusion,!!!! you get to rest!! and i got to talk to others in the same boat as me, and i got a packed lunck,lol !! good luck and glad the pins coming out soon, still thinking of you. i see rheumy 3.45. very nervous but I never know why!!
Good luck with the infusion. I am due to start infusions. Tocililumba.But not until 22/5/14 as limited space for RA treatment as the RA team use the same facilities as the Chemotherapy patients.
Hope this one works for you.
I am sero negative factor and bike you have not responded to a lot of the drugs.
I spent yesterday morning at the NNUH, I think we have a really good rheumy department there. The nurse practitioners are particularly nice and I feel able to moan about my everyday struggles with them as they are so understanding. I hope everything goes well for you !
Thanks everyone. The Norfolk & Norwich UH have a very good Rheumatology Dept and I wouldn't go anywhere else although we have a hospital here. It does have a Rheumy dept but not as good and one of the nurses is really unpleasant and takes the attitude of "pull yourself together"! Not exactly what you want to hear when you are in a lot of pain. I don't go there at all but my hairdresser does and was reduced to tears by the comment.
Will let you know how I get on. Just booked the dogs with the dog sitter for the two days as it is too long to leave them. It is an hour and 20 minutes to get to the hospital so we will be gone most of the day.
RA having given me hell for the last 2 days has settled and my shoulders are better as are my hands but still very stiff in the mornings and I can't bend my fingers. Joints still swollen as well. Hope these funny flare ups only last in severe form for a day or two as I can cope with that. LL x
That is great news indeed and delighted to hear that there is the possibility of it working quite early as I am starting Rituximab on 1 April. (Had my eight phials of blood taken last Friday!!) I was told the average time for a marked noticeable response is 8 weeks but sometimes sooner .. average is 50 days I read, but we all respond at different speeds to these meds. These next two weeks will be hard as it has been over a month now since my last Humira. My biologics sister told me I had to have a clear month before starting my Rituximab after Humira. Guess depends which med/how long it clears out of your system/half life etc., as Enbrel is weekly and Humira fortnightly. Anyhow I feel I am going downhill fast so R Day needs to come round fast! I am not allowed any more steroid injections till the day of my infusion, having had a general one and my wrist done a month ago. I am on Paracetamol and Fentanyl 25 mcg/hr and Ibuprofen. I am now at waddling pace most days and spraining and twanging as I walk, and my hubby has to haul me up stairs when the ankles go, and getting out of bed is awful as my knees are so swollen they don't like bending. So, like yourself LL, I am in need of a med being able to control the RA instead of RA controlling me. I am five minute's drive away from my hospital so that is a big help. Hope your feet are feeling better soon. Good luck with that. Julie x
Hi Julie, how did you get on with your infusions on the 1st April? Hope all went well. Have you started to notice any difference yet. Would be interested to know as I am going in tomorrow for my first one. 8 files of blood taken by my surgery nurse about 3 weeks ago - not heard anything back so assume all ok. and we are all systems go. Now off the Enbrel for the last 12 days in readiness for the infusions.
Had the pins out of my foot 2 weeks ago, seen the surgeon who is very pleased with his handiwork and the x-rays show the toe is now straight. Still a bit sore and I have exercises to do to make the foot more flexible - they hurt as well. No pain, no gain but the foot looks so much better without that joint sticking up.
Starting to flare a bit this last couple of days - mainly my hands. Still taking one Prednisolone each day to help + having to take Nurofen as well. Getting stiff in the mornings so have to massage my hands to get them going. Dropped the coffee jar this morning - coffee all over the floor - as my hands wouldn't grip. Had to stop my older Lab from licking it up otherwise she would have been hyper all day.
Hope everyone is ok and enjoying the slightly warmer weather. LL x
Hi Lavendar ... Lovely to hear frrom you. I am on early hours prowl for food and drink .. so I thought I would catch up on a read of the Forum/board. I don't know why but I didn't get any notification of your reply and just saw it by chance on the Board ... so sorry I couldn't reply to you before your first infusion. I do hope all has gone very well and to plan. It is all so busy and something happening all the time with such regular checks on the BP and pulse etc and the drips. I didn't have any reactions on the days of my infusions (1/4 and 15/4) other than the Piriton tablet zonked me totally. They had to keep waking me up to give me cups of tea and do my BP! Goodness knows how people stay awake on those if they have to have them for hayfever etc.
Yes, I think they also want an armful of blood for the B Cell tests in three months too!
The first infusion I was in a very bad place as I was flaring and every joint was screaming ... I had to have my old cat put to sleep the previous week and spent most of my time in tears which wasn't the ideal way to prepare for my infusions. I lost so much sleep that previous week I felt so tired anyhow so can't say for certain if it was the stress or the Rituximab. I think my poor state of RA and stress. I didn't feel any relief after one day from the IV steroid but the replies to my enquiries here on the Board said that it doesn't actually do too much in terms of calming down infllammation the way a steroid into the buttock does so I felt better to know that, as I was very stiff and siezed as ever after the first infusion and all that week. Yesterday's IV steroid seems to have given me little bit more movement but only slightly. I think I can just about get by till Tuesday's knee steroid injections.
My Biologics sister said that she would let me know the results of my bloods from session two, just to check the Rituxi has started the depletion of the B cells, and she said she had known people find some slight improvements and relief start to happen from two weeks after the second infusion but mainly it is two months before you feel anything significant. Let's hope we can find relief with Rituximab soon. Next blood tests and rheumatology review in July.
I hope all went well on your first session good luck for session two. Do let us know how it went and sorry for your toes. Hope that has brought great relief. It must be very "ouch".
I have been bouncing jars off the kitchen floor too and dropping food all over! My fingers have a lot of swollen knuckles. They should calm down after the steroids in the knees. I am also taking Nurofen as it is the only thing that gives some relief to the stiffness. Nothing else ever does. I also have a Fentanyl patch which is 25mcg/hr so that is sleep inducing too. Hopefully I won't need those anymore if Rituxi works well enough. I am not on any oral steroids an there has always been a reluctance from my rheumy but my GP and biologics sister agree with me that if I am spending 18 hours a day in bed as I have had to these past two months, as I can't move, and oral steroids would get me moving then that is to be considered if I need to bridge the gap before Rituxi takes effects and after the knee steroids, which will last about three months. They are keen to help me with a plan of action so I cannot fault any of them. All trying so hard to help me.
Glad your dog didn't get the coffee .. she could have been barking all day and all night!! I massage my hands in the bathroom sink in hot soapy water each morning to get them moving as it is my hands, knees and ankles which go mad and seize like lead overnight! Frustrating isn't it. As though someone has come along and starched you overnight.
Well better head off to bed now, as I am out of synch being in bed during the days so much at the mo.
Thank you for your kind thoughts and I DO hope all has gone well.
Hi Julie, yes the first infusion went very well. All my bloods were fine as were the other samples but BP was sky high - it always is the moment I get near a hospital. They obviously weren't too bothered about it as didn't take any more during the day. Like you the Piriton zonked me out as well. Slept for about an hour or so and still sleepy in the evening and had another sleep in my chair. The Rituximab went in without difficulty and they speeded it up every time it reached one of the markers so it all went through in about 4 hours. Everyone very pleasant and kept me informed all the way. The Steroids helped my hands a bit but still slightly stiff. I do feel better and a bit hyper at present so assume it is all the drugs. They provided tea and coffee and a biscuit + a sandwich at lunchtime but next time I will take some extra with me as I was very hungry with the steroid effect. Also took a bottle of water with me as got very thirsty too.
Next one is 29th April and I have to have bloods done the Thursday before so they get the results in time. I was told I should begin to see some results by the next infusion so hope I do. My nurse did say that most people notice a definite improvement quite quickly so keeping fingers crossed (which I can now do!). Hubby stayed with me until about 11 and then went off to Gt. Yarmouth to a Rotary lunch and got back about 3. We got to the hospital at 9 and left just before 4 so quite a long day and a bit boring. Took my Kindle, 3 magazines and the paper with me. The infusions of steroids and Piriton had me running to the loo several times during the morning (have drip stand will travel!).
Sorry you are feeling so rough at present - do hope you begin to get some relief soon. I was told that Rituximab does not control pain so ok to take Nurofen, Paracetemol etc whilst on it. I see you use hot water to massage your hands - I use cold - how strange! I find cold is better and seems to reduce the inflammation. Weird.
So sorry to hear about your cat - I would have been in bits too if it had been my beloved Minnie (My Burmese). Our two labs had a lovely time with the dog sitter and were exhausted when they came home and slept all evening! Sending hugs and love for the loss of your pusscat.
Do hope you are beginning to feel a bit better and not flaring so much. My knees have been very bad and one side of my foot but have put that down to the operation on the foot as walking a bit awkwardly at present. Doing the exercises the surgeon set me and can now go up on my toes and get them to bend! Now have to practice picking up a towel with my toes and then a pen which I can't manage at present. Anyway take care of yourself and rest as much as you can.
Hi there ... SO Glad to know all went well, Lavendar! Mine was more like 7 hours in total. Don't know why ... but they were very very busy. All B/P totally fine but I had ten BP tests. Awful as I have had such pain in my elbows pressing on my sticks to get up and down stairs so the B/P tests were sore pressing in that area. My arms feel like wibbly wobbly bits of string! Weedy!!!! Strange .. my biologics sister said I may feel some slight improvement after a month but certainly not between the first and second infusion of session one! However, I will fox that because of my knee steroid injections. That will make the ESR/CRP go down a lot but it is the B Cell readings/results which will prove if the Rituximab is doing its work. I had my bloods done (the 8 lots!!) in February then done on Tuesday (just 4) when I was there. Then in early July the armful again!!
Yes had the same drinks and food too .. and agree absolutely those infusions make you very hungry .. extra snacks next time. I was offered a hot lunch but it seemed a bit awkward wired up! All the staff were amazing .. so lovely.
As I said, I have gone a long way down the RA slippery slope and have a long haul back up. My flaring has got out of control and inflammation pushed joints out of place in my knees, making walking so hard, so that has been difficult. Do you take MTX as well? I hope now your /toesfoot have been operated on that your knees will feel better as other joints always try and over-compensate then bring fresh problems! Grr.
Yes, still so sad my little black and white longhaired male is not here although he was very naughty and nuked my carpets in this last year .. we loved him so. So gentle and sweet. He was 15. We have had cats lived to 19, 20 and 21 so must be doing it right! Thank you so much for your kind wishes. Much appreciated. Your Burmese and Labradors sound gorgeous. I do know Burmese have a very distinct low voice!! I am cat passionate and hope in time to come another comes into our lives. I've had them since I was born on and off.
I do hope for a speedy response for us both to Rituximab but we never know how well these things will work .. just have to be optimistic. I did those pencil exercises when my toes were bad . .but they gave my feet cramp!! They are hard and hope you can soon be proficient at them. Also I had to scrunch up a linen bandage under my foot with my toes from it being laid out on the kitchen floor. My toes are crazily sensitive. I once went to a hospital podiatrist and when he got within an inch of my toes I started freaking out laughing and shrieking! I am surprised he didn't refer me immediately to psychiatry!! Having my feet touched is worse than the dentist!!
I found it hard to read this time as my eyes were rolling with the Piriton!! That is some serious zonking out pill!!!! I am so glad I don't get hayfever. I watched a concert on You Tube on my iphone and did a few little emails I had wanted to catch up on. I had the usual taxi madness on my way home as my husband had to go to work that day and he did come for me on the first infusion but I felt I would go back home by myself this second one as I live closeby to the hospital. It was an hour from phoning the taxi till they arrived as the first taxi that came was a minibus with no steps up to it and they said . Oh can't you get in that??!! I just shook my head and said.. I won't even try as I asked for specific accessible car to come and not a minibus!! Then it took another half hour for an accessible one to arrive. Oh my .. I was so tired. They really are bonkers at that taxi company. I only live 2 and a half miles from the hospital!!
Sending you much love, Lavendar, and lots of luck with your toe exercises and hope the legs and knees can now get much stronger. Have a lovely Easter!
Hi Julie, poor you. You really are suffering at present. do hope the Rituximab kicks in sooner rather than later for you.
I woke up this morning with very stiff hands again - don't know why. So back on the Nurofen because of pain. Hope it won't be too long before it kicks in for me as well. Certainly the steroid infusion doesn't seem to work as well as the
needle in the backside! Yes I was almost 7 hours at the hospital as well what with all the tests and samples, the Piriton and steroids before the Rituximab was run in. We arrived at 9 and left just before 4. As we are 50 miles from the hospital, hubby will take me in next time as well. Have been told it won't be as long. But will take lots of goodies with me to eat. I know steroids make you eat for England - doesn't exactly help the weight which goes up and causes more problems with the RA. Just can't win sometimes.
My Burmese Minnie is now 12 but just as lively. They can live a long time -some have lived to 20 and beyond. She is a real talkative cat and chats away about nothing and everything. Great company too. Always comes running in to let me know it is raining! It's almost as if she is saying come and look mum - it's pouring down. She gets on well with our two Labs too and teases the younger one by batting him on the nose. He looks so surprised. She is a champion cat and I used to show her but don't now as she gets a bit crotchety in strange places and is likely to spit and snarl at the judges. Not a good idea. Also I think as she is getting on a bit, she deserves a quieter life.
Will be interested to know what my B cell readings are when the next lot of bloods are taken before the 2nd infusion. Should give some indication that it is beginning to take control.
I was taken off MTX last November because it caused Pneumonitis (a nasty lung inflammation). Had to have steroids to bring it under control for a couple of months. I will never go back on it again because of the risk of further problems. It caused me to be very breathless which was worrying as I thought perhaps my heart had been affected by the drugs but a CAT scan confirmed what it was and the steroids soon cleared it up and my chest x-ray which I had before the infusions started, showed chest was clear.
I do hope you have a lovely Easter (with lots of chocolate eggs!). Take care of yourself. Will be thinking of you and sending lots of hugs and good wishes. Love Dottie (LL) xx
Hi Dottie ... phew ... where did the last few days go? Had intended to come back and reply on this thread much sooner. also I did lose track as I wasn't receiving notifications of replies and my daily forum batch wasn't going into my inbox but zapping into spam then being deleted! Now under control.
So, how are you feeling? Any different? Would love to hear that something was feeling different .. an improvement for you!!! Too early I guess but there may be little bits and bobs of progress after a month my biologics nurse said. It is a month since my first and four weeks since the second and just less for you so let's hope soon we can feel some results. I haven't been given my B Cell results yet but will chase up. I don't like phoning the helpline. Past experiences but if I don't I won't get to know so I will do it this week and ask for them to be sent to me. Have you had yours yet? My three month follow up is mid July and already have my appointment. I have got more movement than I have usually got on the steroid injections but that could just be that they worked really well when I had them done three weeks ago. However, I still have that blessed Backer Cyst behind the right knee. It has good days and bad depending on the weather ... more than a day of constant rain and I am seized up still.
My feet have gone very skinny ... much more than they ever have . .they seem back to normal for me (and now I have several pairs of D-E fit shoes and I am back to being a B-C. Oh well, time for some more shoes! If they have bars/straps that's OK to wear with a shoe sock, etc., but recently I wore a pair of slip on wedges which are very comfy for support under the heels, but as my feet were too skinny for them now, they sloshed up and down in them and the friction wore a little blister under the edge of the top seam near the big toe where it meets the foot. It has been as painful as the blummin' Baker Cyst!! .. oh well at least it takes my mind of the knee pains etc! At the mo the steroid injections still so fresh so doing their job well but I hope Rituximab is going to do its work.
As I haven't been on oral steroids I haven had the weight gain some people have had but have put on a few pounds due to lack of exercise since last year. Need to turn that round. Hard when you can't move fast though. Thinking maybe another exercise bike but a gentle one .. no clunking pedals and hard seat .. sore bott!
We had a good Easter thank you ... some sweet little eggs and I have been helping my hubby eat his way through his birthday goodies last week so I need to get out and walk when I can to hopeful counter the fact we have been eating naughty things. It's back to salads and chicken/fish now for a while. How was your Easter? Munch any choccie eggs? I do hope so!
Minnie sounds adorable and I know they have a low voice and are quite talkative. The one I knew sounded like he was saying Noooooooooooooooooo all the time! Very low and growly. Made me laugh as he was haughty but gorgeous. Guess Minnie wanted to retire from her shows! I think they do get crotchety .. many cats do in older age .. I used to call my old black and white shorthair Jason . .the Victor Meldrew of cats! He was always complaining about something and used to scratch like crazy on my kitchen floor if he disapproved of his food which was never anything less than a very good brand .. usually vet brands and organic as he had kidney issues... but he used to become bored and much more interested in visiting our neighbour who ate quite naughtily and heartily and used to give Jason a sausage or gammon!! I had to ask him to stop this and he made a compromise with a little chicken every now and then!! Jason was also partial to stealing my husband's favourite curd tarts too!! My most recent puss . .Pepe ... the little powder puff, who has just sadly departed . was more into fish and chicken. Cheshire cheese was his weakness, bless him. One of mine also. Minnie sounds as though she is the boss of the Labs! They are usually so tolerant of haughty cats!! Tolerate the nose batterings!
Oh no, that sounds absolutely awful about the MTX problems and thank goodness the steroids cleared the Pneumonitis. The last thing you want is a problem from a previous drug stopping you starting a new one. Do you feel any different with being less tired for being on Rituximab? I seem to have got over that ridiculous initial tiredness .. just back to the normal dopeyness which I associate with the Fentanyl patches and RA in general. I am eating well but my body clock is still out after all those weeks and weeks since December, of being in bed and then not being able to sleep at night, so I feel it is mean to my poor hubby when I am shuffling around like someone demented, so come down for a cuppa and a look on the NRAS! I know so many of us have these same difficulties. I hope to get back into a better pattern! Am just going to catch up with a programme on the iplayer then bed. Hope you have been managing to get out? .. although we have had quite a bit of rain here in Yorkshire but lovely sun too. Hard to know what to wear. Coat on .. coat off ... jumper or no jumper ... LOL. Well I shall say bye for now and speak again soon and I do hope all is going well. Love and hugs to you, dear LL. Julie xx
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Great news you've got the green light for Rituximab 
I am on early hours prowl for food and drink .. so I thought I would catch up on a read of the Forum/board. I don't know why but I didn't get any notification of your reply and just saw it by chance on the Board ... so sorry I couldn't reply to you before your first infusion. I do hope all has gone very well and to plan. It is all so busy and something happening all the time with such regular checks on the BP and pulse etc and the drips. I didn't have any reactions on the days of my infusions (1/4 and 15/4) other than the Piriton tablet zonked me totally. They had to keep waking me up to give me cups of tea and do my BP! Goodness knows how people stay awake on those if they have to have them for hayfever etc. 
Rituximab Part Two
Rituximab 
