I have had my first session of Rituximab in early/mid-April and have just had my review and (some of) my blood tests back. Good news that after 3 months my CRP is under 5 (was in the 50's before and my ESR 80's and my B cell data shows that the RA is being surpressed. (No ESR done .. a trainee took the bloods and did not take enough .. I did mention it at the time, but .. fell on stoney ground! However, CRP is indicative enough.) I was told by a nurse I would get my B Cell data given to me but a Registrar I also spoke to recently said that that information was no good to me really so all I need to know is that the B cells are being surpressed/Rituxi doing its job. Is this so all other fellow Rituxiambers - Do you get your B cell data?
Also I have found out since my rheumy clinic 3 monthly review 3 weeks ago that I now won't have an appointment till January? Guess she is thinking under 5 for CRP and all other routine bloods and B cells show Rituxi is working well after 3 months so leave her longer. Would like to have been put in the picture .. vague this time with the info they gave me.
I was under the impression from all I read and discussed before starting, that at this early stage I would have 3 monthly blood tests which I would prefer as if the RA starts to creep back sooner/B cells come back .. I need to have that proof to have the next infusions before 9 months, and also that nothing else is being affected in my blood .. which is actually spot on at the moment. Never had my HB level so normal. (Just under 13 .. usually hovers 11-11.5 but even that has been quite good for me.) I asked if I needed another infusion at 6 months instead of 9 if I started to feel bad, could that be brought forward easily and the registrar I spoke to this week said .. difficult! Not what I wanted to hear or was told prior to starting. Was told in April you can have your infusion brought forward if you start to experience difficulties as long as not done any sooner than 6 monthly intervals. I don't have much inflammation. I still do have a lot of knee/ankle joint pain when walking .. especially till I get in my stride (pain is damage done .. irreversable joint damage/tendons) but not like the hideous flashing pains/swellings all the time before starting Rituximab. I guess I am just not trusting knowing that I was left floundering last year with no meds protecting me for 4 months whilst waiting for biologic clearance/hospital communication breakdown.
Have other Rituxi people here had success after 3 months in bringing down the CRP/surpressing B cells and been put to 9 monthly infusions on that one set of blood results after 3 months? Would love to think that it could last till 9 months .. or even more .. I know some can go to 18 months .. but scared they won't accommodate me if I need it done sooner. Anyhow finally after two years something has brought down the inflammation. (My feet are so skinny all my shoes flop off! ) I can also see knee caps, for the first time in 3 years.
Thank you
Neonkitty
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Can't help with any of your questions NeonKitty but that is at least great news that Rituximab appears to be working! Hope others on the same drug will reply. Tx
Hey NK that was fast! I'm doing good thanks. Stupidly anxious about when and if my RA will make a comeback as I've been off all meds for 6 weeks now. I notice you spoke of "hideous flashing pains". I get these with increasing frequency in odd places - some days worse than others. No one of my med team seems to know if they are RA related or not. I used to get them when my RA started three years ago so they make me a bit anxious.
I've never been any good at suspense - can't watch thrillers - so for me this waiting game is a bit nerve wracking but rheumy said I seem to be managing fine. I pointed out that my ESR rises everytime I come off a DMARD (not as high as yours but mid 60s) but he said symptoms are the guide not bloods. He feels that I might manage quite well without drugs for now and deal with things as and when they arise.
Was relieved and delighted for a few days but now I'm torn between optimism and terror!
If only it just ended when the pain stops life would be so much easier eh? X
Hi Twitchy, I thought my flashing pains were when my RA was uncontrolled. Have yours been at those times? Like toothache and they came in the worse affected joints ... I would put money on it being inflammation pains. I think you eventually calm down to whatever med you are taking .. or not in your case. The unknown is indeed scary and all one can do is monitor anything different/signs of RA coming back and tell the rhreumy/doc asap. I think Rituximab started to work after 9 weeks for me .. I felt something very different and I see subtle changes and feel improvements. As I said it can't repair damage done and there is quite a lot of that but the relief it has brought so far to someone who has "very difficult arthritis" I am told, (well pretty horrendous if we are being honest !) is very welcome. I hope you can relax and enjoy the rest of the summer and ta ta to RA! Neonkitty x
Thanks - mine so far hasn't been erosive as yours has and the pain is rarely accompanied by swelling or specific joint pain - just a flu like ache, general stiffness and lots of this small fibre neuropathy. If I had a weather person within they would be describing storms with lightening bolts!
But the excruciating flashes did turn into equally excruciating joint pain last time. This time its all just special effects so far!
Yes hopefully mine will settle and yours will too. I know two people who have both had their very aggressive RA well controlled by Rituximab. I so hope you are another such. Xx
Hi again Twitchy .. apols for the delay in replying. I hope you not so anxious about your RA returning but I understand as I am worried mine might go back to how it was four months ago if I dip down between these first duo of Rituximabs and before the Rheumatologist thinks I need to go back, but I do know they said before when talking to me about the med that 9 months is the norm. As long as I can have a blood test end of September which is six months since commencing to see if the signs are that RA is still surpressed. Just hoping I am not left waiting if I need one sooner. I have got used to no hideous flashing pains and do not want to go back there. Makes you realise what you have been putting up with when there is none of that, although my knees/ankles are still as much of a nuisance, seizing. Grr. I hope your neuropathy has calmed and no lightening bolts for you? (Got enough of that over the UK just now!!) I had some tinglings and numbness in my fingers when RA was out of control but that has all stopped now. I think it has proved it can significantly reduce the inflammation/diesease process and quite quickly for me and hope it continues to do that. I was told it does work well for aggressive RA and they were right. I wish I could have had this a year ago instead of Enbrel and Humira but we never know which is going to be the one that works. Good luck Twitchy. Neonkitty x
Thanks NK. Morning stiffness was worsening and hobbled into see GP yesterday. She took one look at me (up all night with nerve pain in feet and shins) and agreed finally to refer me to a neurologist. Am hoping this helps. My suspicion is that it's vascular or just my strange RA. But whatever it is I'm now throwing anti inflams, upping Amitriptyline and hoping like hell that these do the job soon before I get carted off to the funny farm. Not even joking. Enjoy your new found peace from storms within and long, long, long may it last! X
Aww TT ... so sorry to hear there is such crazy activity going on on your feet and shins. That constant pain when not even moving is enough to drive you gaga. I know so. I wondered if my ankle pains were trapped nerves and also putting pressure on tendons due to the way the joints have gone. I know my veins in my worst swollen area I had ... my ankle .. caused sharp/acute pains but seemed more coming up to the surface than penetrating deeper. I hope you can get in to see the neurologist soon. I hope no storms within and I get my next infusion before the "RA starch monsters" try return and stiffen me up. Let us know how you get on and hoping you are feeling better very soon. I am at physio this week to have traction on my ankles to get them moving and strengthen them (they still wibble wobble about and don't really want to support the rest of me!!!) Love NK x
Well have you heard of Tarsal Tunnel? I did ask my rheumy if this might be causing my problems as my podiatrist wondered. He poo poohed this calling it "diagnosis of the week!" So I think others had asked same thing! However he did explain that this is when the large nerve running from knee through the ankle into the foot gets affected by joint changes and inflamed tissue inside the leg. He said mine was too diffuse to be Tarsal Tunnel but from what you describe of your ankle this might explain things perhaps?
Meloxicam is helping with the stiffness but not yet with the raging tingle/ nerve pain - which has developed into fiercely itchy skin on my shins now! Is there no end to the silliness of my body?! Upped my dose of Amitriptyline to three per night last night and then nearly dozed off in a big meeting this afternoon!
Hi TwitchyT, Only heard of Carpal Tunnel in the wrist but same idea I think. Could be what is happening to my ankles. I suspect joint damage is partly to blame but some of it defiintely is muscular/tendon. My Physio is usually good to explain so will ask. Is it little veins/blood vessels tickling as they are irritated/inflammed? My ankle used to tickle like mad and little veins come up. When RA was going gaga all over. My legs tickled even if not inflammed/swollen and I have dry skin still but no way near as bad. It would fall off in little snake-y flakes. Ugh. Think that was just a dry body .. RA drying up the skin and likely the steroid injections causing that dryness too. Lashings of lotion needed! I use Neutrogena Creamy Body Oil in an easy pump dispenser and it is soothing and non greasy. Has helped a lot for me. Not too pricey either. Wonder if this intense heat we have had has caused your skin to tickle more? Hope you are soon back on track and no need for so many knock out drops! NK x
I am glad the Rituximab seems to be helping you but I understand completely your confusion/uncertainty about the B-cell blood tests and date for your next Ritux infusions having been there (and still being there myself).
Re the B-cell blood tests I have asked about those results and have very vague answers along the lines of "well it's doing what it should" and the last time I asked it was something like "well really they aren't much use and I don't know why we do them really". Like you, I would really like to know and if even the docs aren't really interested it makes me wonder why they take them in the first place!
Re the infusions themselves, I have been in a similar situation and it does seem to me that there is no "standard protocol" and I have been told different things by different nurses/doctors.
Before I started Rituximab (May 2011) I was told I would have two infusion cycles six months apart and that the second cycle would be given regardless of what my RA was doing. They told me they wouldn't make a final decision about the effectiveness of the drug until three months after the second infusion cycle (ie 9 months after starting the drug). Thereafter, if all was well, I would be able to have the drug as and when I felt I needed it, so long as there was a minimum interval of 6 months between infusion cycles.
Unfortunately due to other health issues, I wasn't able to have my second infusion cycle until more than a year after the first so I missed my "6 month booster dose". When I next saw the consultant he agreed that I may not yet be getting the full benefit of the drug for this reason and said that I could have my third infusion cycle when I was ready but when I spoke to the nurse about this she just kept telling me "its not automatically given after six months you know" which confused me somewhat. When I phoned to ask about booking my next set of infusions, I was made to justify my request to the point where I felt I was almost having to beg and I got the distinct impression that she felt I shouldn't be asking for the next infusions until I was pretty much back at square one (which, given how long Rituximab potentially takes to work seems to defeat the object). Again, other health issues delayed my third infusion cycle and there was actually a gap of sixteen months between my second and third infusion cycles. Because of the mixed messages I was dreading the next time I needed to ask for my infusions but this time, when I saw the doctor, she told me that I was absolutely right, I should be asking for the infusions at the first sign of "trouble" and she went on to say that current thinking seemed to suggest that Rituximab should be given every six months regardless! I am going for my seventh infusion tomorrow (nine months after the last lot which seems to be about the right timings for me I think). But I suspect that next time I ask the answer will be different again. I'm not sure why this confusion exists - unless of course it is budget related...
I'm not sure any of this will be of help to you, but hopefully it helps to know you aren't the only one having this confusion. I believe there are a few others here on Rituximab so I will be interested to hear what they say and whether things are clearer cut at their hospitals.
Finally, just to say that Rituximab is now working well for me and I very hope it does for you too.
Hi Tilly, sorry for my delay in replying and thank you so much for your message. Hope your infusion last week went to plan and you are alright. All you say about being told different things and wondering about when you should have your next one .. exactly the same as what I have been wondering. Same for the B cell results. Guess they are no use to us. They are looking for in depth anomolies in our B cells to the med and likely don't want us to have those as another set of things to get hung up about!! Did you dip down after 6 months and feel you needed it .. as though the RA was breaking through too much? .. or did you feel it generally lasted well for nine months? I could not bear going ino a decline and risk more joint damage as last year I went downhill after finishing Humira and in that month or so several fingers rapidly got joint damage .. it was so fast as the RA was way out of control. I guess I have to get my doc on my side again if that happens but if I have a blood test six months after commencing Rituxi (that will be end September) then guess that will show them if I can wait. I also hope as I said to Twitchy I am not left without a slot for a sooner appointment/infuson. It is all a bit unsure at first until you know the pattern you will have. I know too they don't want to give it sooner if you are a patient who lasts longer on it. However, I am delighted my CRP finally down and to under 5 and all sorts of benefits being felt . .just the joint damage on ankles and knees gives me major problems standing up and getting in my stride but the physio is sure to help all he can to get me moving but inevitably my already damaged joints will need some surgery down the line but I am so glad Rituximab has halted the madness. I shall phone my Biologics Sister who gave me the infusions and ask her to clarify as she will be the one doing it again and looking at my results as well as the consultant. Good to know Rituximab can help someone like me with crazy RA only dampened down by hyrdocortisone for the last couple of years. Hope this gives hope to others to try it. Neonkitty xx
It is spot-on Tilly .. all of it, thank you! Thought I was going mad and was mis-understanding. Maybe they don't want to give it too early .. but it does not help it we are left floundering in pain inbetween sessions. You go downhill and are hrder to treat. Will come back tomorrow and reply more. Just wanted to say thank you for your excellent reply and hope all goes well tomorrow. Sorry also you have had some problems delaying yours in the past, but happy for you it is now on track and I do think 9 months is the average time but we are all diffetent. Will add some more tomorrow. Take care. Neokitty x
Thanks so much Neonkitty and I'm so glad that my ramblings were helpful. Thank you too for your good wishes for my infusion tomorrow. I really do hope that you can get some clarity from your hospital on your infusion timings and that the Rituximab helps you as much as it is helping me.
I have had 3 lots of Rituximab infusions now.!st march 2012 2nd may 2013 3rd march 2014 . I have found that I get at least 6 good months each time. I don't know my Rheumys policy on having more frequent infusions, but if mine tail off in the winter as they usually do I might try to get the next doses sooner. I have my bloods done about every six weeks but have no idea about my B cell count. I still take 20mg Leflunomide daily. Hope this helps and good luck.
Thank you Jaxx and sorry for my delay in replying. I am glad you are getting six months out of the infusions which shows they are working very well. Did you feel any better/difference after the second lot? I was told this is likely. However, not sure, if three months since starting my CRP is already down to under 5. I think my bloods are to be every three months. I am also on 15mg sub cut MTX but think they will taper that in time. I would not want to dip down and feel as though the RA was breaking through ... the feeling like when a hydrocortisone wears off. Guess we just have to watch for the signs. Have our blood tests too which will prove if it is working or waning! Good to hear others are having great benefit from this medication. I was just told my B Cells were being surpressed by the Registrar when I had my wrist injected last week (joint damage from last year ... finger stiff and rigid .. now moving again!) so that means Rituximab is doing its work and my Rheumy said the CRP and my other general bloodwork shows so much improvement it all indicates that the med is truly working. I think the info on the B Cells may be deemed too in depth for us to understand or may freak some people out if they knew how in depth they were looking which of course is standard procedure for this med that alters your B cells. Good luck with yours and hope you are feeling well Neonkitty x
Hi Neonkitty, I can't say that there has been any difference between any of my three lots of Rituximab they have all worked well although I am much further down the line than you and I was much later starting on any biological as I had a severe infection from a failed ankle replacement so I couldn't be put on them unfortunately ,this happened in 2007 so there was 5 years more damage done before my Rheumatologist was able to give me anything other than MTX and Leflunomide. I find I have more energy(or am I just lazy!! and hardly any flares, I also haven't needed my usual shoulder or wrists injections, so all the very best to you and I am sure you will do well on it. I also have not heard of any side effects at all. I like the fact that I stopped MTX when I started Rituximab as I don't think I ever got any benefit from it over a lot of years.
Hi Jaxx .. thank you for your reply. Unfortunately I did not start a biologic till last May .. 2013 - Enbrel then Humira three months later and neither worked so last year I had virtually no protection from a med as MTX alone not working for me after ten years of being on it .. with fluctuating results. Some good years in all the madness!! I have had my RA since 1995 .. Sulpha my first med so I have sadly got a lot of joint damage but at least Rituximab stopping any more disease activity at the mo. I am already feeling more energy after 4 months on Rituxi but my Fentanyl patches zonk me out! Still early days and strength coming back slowly, but my ankles really need sorting. Physio Friday. The whole body just feels so much more relaxed .. I can lie comfy in bed and and sleep more relaxed. I can even open my own jars and bottles now! I am so sad to hear about your ankle .. especially with one of mine being a major concern at the moment .. I understand. I also would like to come off MTX sub cut, but feel they may wish me to taper down more to 5mg from 15mg but I am not sure it has been doing enough either? I will have to talk that out with the rheumy consultant. I fear she will get annoyed but I have to air my opinions as it's my bod! I hope you are able to be mobile/get about and your ankle has settled .. and so glad Rituximab working for you. Thank you for your helpful comments ... it is invaluble the encouragement we give each other and shared experiences. NK x
Hi neonkitty
So pleased your ritux seems to be working well for you! Long may it continue.
Thank you Kiki! That is kind of you. I hope whatever you are taking is working well for you and you have things under control. Neonkitty x
Hi Neonkitty,
So glad to hear that rituximab appears to be working well for you
I have put a link here to an NRAS article about rituximab. It says the following regarding repeat treatment timings :
" Although the safest and most effective timing for repeat treatment with rituximab has yet to be determined, preliminary data suggests that the interval will likely be every 6-12 months"
The information in the ARUK leaflet on rituximab is as follows :
" infusions are repeated when the improvement is wearing off ( around 6months -3 years later) Many people have rituximab about once a year".
I think this probably varies slightly from person to person and consultant to consultant, but it is worth just giving your rheumatology team a call to clarify .
Thank you Sally for your kind reply and help. I don't trust the hospital system entirely to automatically recall me after nine months and my worry was when the Registrar said if you do need to come at six months it could be difficult! Not what I wanted to hear but I will make my first point of call the Biologics Specialist Sister who adminstered the med in the Biologics/Day Centre as likely she will have been asked to book it or can explain what will happen. Apologies for my delay in replying. I am of course very pleased a med is working for me at last, especially to bring down my CRP so low after only three months.
I have mine every 8 months as I once went 10 months and had a full blown all over body flare, not nice. I keep a diary of each infusion and how I feel and I used it to show my docs and they agreed to re treat me every 8 months. I've just had my 11th cycle.
Thank you Kiki .. I have kept a diary too but not too much to report but I always type a review of myself anyway whatever med I am on so if they ask things I can look on my iphone notes and be clear. Glad you are going well on it but your body flare is exactly what I am trying to avoid so will listen carefully to my body in the next few months and get another blood test done end of September which will be six months since commencing and three months since my last one (last month.) You are obviously doing very well and long may that continue!
Hi I'm Having to reply to an old post of my previous identity on here as I've updated my MacBook in HU and it's reverted me back to Neonkitty and my Neonkittie17 posts have disappeared along with any private messages. That facility just isn't there any more on screen and I still can't use HU on my mobile properly since the HU changes so looks like I'm off here till I sorts. Sorry if I haven't replied and that's why!
I thought it was odd seeing the 'old' you! Why don't you see if the HU tech team can throw any light on you probs. If you go to the bottom of the page do you still have the black box? If so under Support tap Help Centre, that should take you to a page which is again entitled Help Centre. On the rh side (on my iPad anyhow) there's the option Contact Support, tap that & it brings up an page where you can message them. They've been really helpful with probs I've had previously with the site.
I can't even send a message as the icons at the top if the page/screen are over the area where you start a message!! I'm well and truly foxed with this. All I can see are old posts of mind as this iD and not my current one.
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I wondered if my ankle pains were trapped nerves and also putting pressure on tendons due to the way the joints have gone. I know my veins in my worst swollen area I had ... my ankle .. caused sharp/acute pains but seemed more coming up to the surface than penetrating deeper. I hope you can get in to see the neurologist soon. I hope no storms within and I get my next infusion before the "RA starch monsters" try return and stiffen me up. Let us know how you get on and hoping you are feeling better very soon. I am at physio this week to have traction on my ankles to get them moving and strengthen them (they still wibble wobble about and don't really want to support the rest of me!!!) Love NK x
I use Neutrogena Creamy Body Oil in an easy pump dispenser and it is soothing and non greasy. Has helped a lot for me. Not too pricey either. Wonder if this intense heat we have had has caused your skin to tickle more? Hope you are soon back on track and no need for so many knock out drops! NK x
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