Just a quickie (for me!) as I lost a vital key on my keyboard and can't type an aitc*!! Grr. Laptop going in for repair next week as need it for scanning docs by email for some work I am doing. Just been for my Reumy review today .. more on review wen I can type properly again ..,. all inflammation acceptable (ESR up five but understandable ... wats been going on) and CRP 5 so still going on OK from my first duo of Rituximab infusions last April.
I asked re Rituximab and no Mtx as I really do not like taking it .. am convinced it is responsible for my fatigue ... and I saw a very good and experienced Registrar I've seen before many times today (my main reumy I was meant to see was off sick today) wo said not allowed to give anyone Rituximab unless taking Mtx. Are any of you on Rituximab but not taking Mtx as it upsets you? Do your consultants allow it?
I know it is supposed to assist biologics etc making it easier to take effect, but I know it is Rituximab doing it for me and not Mtx as it was doing precious little on its own last year. I am told to disucss at my next clinic in 12 weeks wen my reumy will be able to advise. Maybe drop down to 5mgs .. but I am on 15 so could drop a little more. Trust everyone I know is well. Sorry for semi-silence from me. Daft keyboard but also as a few of you know, my wonderful Mum passed away on 5 Mar and it is a difficult time and been so since end of January. Lost my best friend and a fantastic Mum and lovely, funny lady. One in a gazillion!
Take Care, all.
NK xx
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NeonkittyUK
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Hi, I cannot tolerate MTX and had one cycle of Rituximab. My team were struggling to control me at the time so it was tried hoping it may work but it did not. Farm
Hi, I cannot Methotrexate due to allergic reaction after taking it for 4 years. When I am due my next Rituximab infusion they will give me the Rituximab on a Monday and then Cyclophosphamide infusion on the Wednesdays of the infusion weeks.
The last time I had Rtx I was on Leflunomaide but had to stop that too due to skin reaction.
I'm going to be doing exactly what you are doing but in a different order. I'm going to take my last Rituxian today and then Cyclophosphamide will be added. I believe that MtX will be discontinued today, my lab tests taken last evening look like the liver is not liking it much at all.
You and I will be starting the other chemo about the same time.
My reason for taking all of this is that I am touched by Inflammatory Arthritis. The biggest reason though is because I have some nerve disease that is very, very rare. Its as if someone took a bite out of random nerve cells straight through the axons as if it's an apple..
IT's killing them and they prob will never regenerate. My body has to decide to grow them on it's own. My body doesn't know how to at the moment so I will be in the ranks with you when you get yours.
I'm sticking with Tuesdays to get ti. I wonder how puke wise and feeling like the flu we will get.. I expect it but I am going to believe that you and I will walk through this with zero problems. XX Karen
TY Farm .. glad it's working for you. I said to my Registrar some people could not tolerate it but Registrar said had to take Mtx but I must discuss w my Consultant next clinic review in 12 weeks. Would like to reduce down to less as am on 15mg and believe it still makes me fatigued even at lower/mid dose. Maybe I can take a minimal dose of it to satisfy NICE.
I have been on mtx for nearly 5 years and have had 2 courses of rituximab January & February last year and February and March this year.
Last couple of years my liver has reacted really badly to mtx so it was reduced from 15ml to 12.5 to 10ml then down further to 7.5ml
Each time it has taken several months for my liver to recover my ALT readings were around 198 and should have been between 7-32/35 ( can't remember which)
My last mtx injection was August last year and this time it has not recovered from the damage at all my consultant thinks this may now be permanent damage so he has said I am no longer to have mtx again.
Because rituximab worked for me last year he got together with the whole rheumatology team at my hospital the Queen Alexandra in Portsmouth and they all agreed it worked for me and I could have it again this year in February providing my immunoglobulin levels had recovered from my infusions last year.
He stressed this really is not normal practice but because I react badly to taking mtx and this is supported by monthly blood tests in my case they will make an exception to continue my rituximab infusions. Also since my 2 in February March I have been told I will have then every 12 weeks not every year as I was previously having as my rheumatoid markers start to creep up around 10 weeks after the infusion if I'm not on mtx.
It does TY Mcrparader! Seems if you got a major medical problem/issue consultant will try navitage round it to allow you to continue. My best bet is to ask to go down as low as I can on MTX. My ALT never exceeding 71. It is to be under 50 I was told and mine is. I just feel so fatigued and convinced MTX is reason. My first Rituximab duo were last April and got bloods done last week and ESR and CRP fine so no need to repeat Rituxi yet. Glad you seem to be getting sorted out now
Even though my mtx was reduced and finally stopped, the fatigue I have with it has not changed at all.
I recently went on a course run at my hospital called 'tired of being tired' arranged by the rheumatology team. The thinking behind it being if we can slow down our breathing using as much lung capacity as possible by taking deeper slower breaths we could relax more.
I have noticed a difference I am no longer so tense when I sit down, I am taking deeper breaths right throughout the day too. At work and at home. My flares when I have them are not so intense.
During the course we also looked at activities we could do seated in a chair, standing or laying down on the floor, (or in bed for me as I can't get down to the floor), Thai Chi, aromatherapy, gentle massage as well as a gentle aqua aerobics - I completely tore my Achilles' tendon last year and I didn't think I would be able to do the aqua aerobics at all and was in fact really scared to take part the rheumatology team were all in the pool with me as it was a trial for the staff and they encouraged me to take part saying they would help if I had any problems. The trial was so successful that it starts for patients next month.
The week before Easter I returned to work full time (having started a phased return in January 2015 overseen by my Rheumy, surgeon, occupational therapy within human resources for Hampshire county council and my head teacher) - I work in a special needs school with autistic & Down's syndrome children as well as having children with behavioural difficulties in class. Every day is hard work physically and mentally.
I feel the same fatigue when I am off work as when I'm at work, felt no change at all since stopping mtx and have come to the conclusion that whatever I do that fatigue is here to stay it is another of ra's gifts to me! I try to pace myself but after having the last 2 nights with little or no sleep I know I cannot carry on like this but how do I pay my bills?
I live alone with my 2 girls 14&16. I don't even qualify for a blue badge although my ra is very aggressive and almost all of the meds I have tried have stopped working- my Rheumy has told me that I'm nearly at the end of the road in terms of meds ... Next alternatives are toccizilimubab & etanercept there are many I cannot have as I had thyroid cancer in 2000.
I don't think it will be long before they say rituximab isn't working for me either.
Everyone is different, their ra is different and everyone's bodies react differently to all of these 'treatments' (poisons in most cases!)
When I was first diagnosed I tried all the copper bracelets, magnets fish oils all over the space of 2-3 years giving them plenty of time to work - what a waste of money that was I finally gave in when I asked my Rheumy what he thought of them in one word he said placebo! He asked when I started taking them I said when I first diagnosed- he looked back through my notes saying when I started sulfasalzine & NSAIDs there was a clear response within reasonable time after those meds were started. When I got home I binned all the bracelets, magnet matt to go on my side of the bed and fish oils.
I wish they'd find a cure. I'm scared my future will be as bad as the last 7 years.
Yes I am on rituximab and do not take methotrexate. Just recently had my third round of infusions. Sorry to hear about your Mum. My Mum died 11 years ago and it does get easier but I still miss her. G
TY Gillian. No never easy .. I understand you. May I ask did you need to stop MTX due to a separate concern for your well being like Mcrparader? Was it reason to stop it as was told yesterday by Registrar, Rituxi will be stopped if I want to stop MTX.
I was allowed one cycle of Rituximab without MTX (it gives me morbid depression) but might not be allowed another cycle unless I take MTX, I'm allowed to take just 2.5mg to satisfy NICE, I've told them I will do that just to get the treatment. I'm waiting for a decision, possibly will know this week. Apparently if you are turned down because you won't take MTX you will never be offered Rituximab again, at least where I live so I hope I am allowed it as it is the only treatment that has even half way worked for me.
TY Dogrose .. good to know NICE will let patients drop to lowest MTX of 2.5gms at least. Same for me too .. Rituximab only med in last five years to turn round aggressive and out of control RA. Don't want to stop it.
TY Alanna (sorry can't type last letter of your name sweet lady. Keyboard gone nuts .... in for repair at weekend). It's been very difficult .. knock on effect on my joints .. mini flares and a fall . .grr ... but calmed back down now, but I didn't care about it .. just wanted to be at Mum's side every day. No pain or discomfort for my Mum .. it was Alzeimer's apidly closing her body down. Mum was intelligent and loving always.
Yes, I want to reduce from 15 to 10 MTX and maybe lower eventually .. will be speaking to my consultant. Glad you are going to start Rituximab .. it's done great for me but still got a lot of old OA damage and will beed a couple of replacements .. inevitable .. but Rituxi stopped all inflammation and pain and none of previous RA meds did. Just over a year since my first duo of infusions. Do let me know wen you've been and done your infusions and I pray it works as well for you as it's done for me. PM me anytime. Much more experienced Rituximabers on NRAS but if I can assist at all do ask. xxxx
I'm in the same position.....about to,start RTX....I really really don't want to,take Mtx, but Consultant said NICE says it's both or nothing.......but he has agreed I can only take 2.5 mg a week. Don't know when I will start now as my dates are when the Jnr doctors are due to strike!
I had my first Rituximab infusion two years ago, I'm currently on hydroxychloroquin and prednisolone but only 5mg, and life is much better for me now. I was on Mtx for about 4 years with varying doses, but I had to stop because I suffered really badly with side effects and got to the point where I could hardly eat anything, on top of all my joints hurting! So I threw my toys out the pram and had a big cry to my rheumy consultant in London (she's fab) and she was so surprised by my outburst, before you just go along with everything, but I was sick and tired of being ill all the time and having no energy. So she stopped my Mtx and a few months later started Rituximab, and I've never looked back since so if you don't want to take Mtx, tell them! Or get referred to London, the people at Guys are fab and actually know what they're talking about, not like my local hospitals! Depending where you are of course.
Hope things work out for you lovely, keep your chin up. Xxx
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Laptop going in for repair next week as need it for scanning docs by email for some work I am doing. Just been for my Reumy review today .. more on review wen I can type properly again ..,. all inflammation acceptable (ESR up five but understandable ... wats been going on) and CRP 5 so still going on OK from my first duo of Rituximab infusions last April. 
so if you don't want to take Mtx, tell them! Or get referred to London, the people at Guys are fab and actually know what they're talking about, not like my local hospitals! Depending where you are of course.
Fuzzy head on MTX
Skin lesions/growths while on MTX
ELEVEN DAYS ON MTX
Shortness of breath while taking MTX
