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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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I saw my rheumy last week and have also made no progress since the Rituximab in December. My ESR was 60 odd before and 85 now  Like others, I was told to be patient and that for some people the 2nd set of infusions work the magic. It's hard staying positive though. I'm in pain with knees, elbows and several parts of hands, including 2 sets of nodules which have appeared and are very sore. My MTX is going back up to 20 so hoping this might make a difference soonish. Sorry for not being around more - I do check in every so often and catch up, and often think of everyone. School is crazy after the 'notice to improve' from OFSTED. xx Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ailsa Sorry to hear there's no improvement on the Ritux for you yet. Isn't it strange that 3 of us are in a similar position?! Others have said 2nd or 3rd cycles have worked but at what cost to the joints in the interim? I'm already experiencing more joint damage as a result of 'the wait' and the thought of having to wait a further 6 months to see if a 2nd cycle works doesn't bear thinking about  That said I don't think my consultant intends holding fire for a 2nd try as she is already considering alternatives. Perhaps I'm a bit different, because I have had the disease so long and it has previously left substantial damage in it's wake. Who knows? I'm sure life in school must be even more difficult when you are feeling so rough. You do really well to carry on; I'd be fast asleep in the staff room before it got to lunch time! Hope you start to feel a difference soon. Take care, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Sounds blinking awful My crp is roughly snap with yours and I know how this feels Stay in bed? That's ok if you can turn over?! Have you had a stab of depo recently? I also think the pain team need a referral You cannot be expected to live in this much pain 16 wks I think it is- it should be working in 16 wks Much love Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ailsa,
sorry to hear you're suffering and that the Rituximab hasn't done it's magic yet.
seems that all of you that started on it recently are all on a waiting game. i was also going to suggest if you could have a depo injection to tide you over,
really hope things turn around for you soon,
do keep us posted,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 119
Location: warrington
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Hi Ailsa,
sorry to hear rituximab not working for you. I had been doing ok but last weekend wham. hands swollen knees & hips sore and generally feel down and tired.spoke to pauline rh nurse and she says its too early for 2nd lot of rituximab be april - may time !! waiting for blood result and can't have depo steroid inj yet as i have water infection. it sucks doesn't it.
thinking of you.
sue v xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ailsa,
Just read your post. You poor thing, how do you carry on working long hours and with
children.
I had a depo inject last evening, as like you sufferring and no improvement and
other than my knees everything else hurting - mine is another story though and I
will put on a separate post.
I hope the increased mtx will help you soon
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Ailsa, I am also in the same boat, had my infusions in Dec. It is really hard to stay possitive when everything takes so long to get working. I just keep thinking that it has worked for so many, so why shouldn't it work for me. I know how stressful school life can be at the best of times without extra pressure and being ill on top of that but luckily am retired now. I certainly wouldn't be able to do it now but you really need some relief right now. When I had such a long frustrating wait after just having my mtx increased I got onto my own G.P. who got onto the reumy team and sorted out a steroid inj. and when that didn't work got me on to a low dose of prednisolone to keep me going. It depends how far you live away from your hospital but mine is an hours journey much easier to get to my doc. I really hope things start to improve for you soon. Best wishes Zena x.
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Rank: Newbie
Groups: Registered
Joined: 5/6/2012
Posts: 1
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Hi  I'm new to this forum thing, however I too had Rituximab in early January this year. Ive so far seen no improvement and had too beg my rheumy team two weeks ago for steriod injections (already on 30mg of predisolone a day) I do feel better from the steriod injections however still not great  So Im unsure what happens next I have my review at end off May to see if its worked any , and I know its not. Will they do more rituximab at 6 months (june) and make me wait again too see if that works? or will they move onto something else?  I really dont know what to expect but Im also getting stressed scared and feeling like I cant cope with feeling like this much longer Any advise would be greatly appricated cheers  Julie 
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Julie
Welcome to the forum, you will always have support and advice on here, and quite often find out about important things connected with RA you will not always find anywhere else.
I am sorry that you are in such a awful place just now, unless you have been in this situation no one would understand, if can be so hard when you possibly haven t found the right medication, I m sure others will offer good advice and remember you have the NRAS helpline too, which is very good. It took me quite some time to find the right one, but please be assured you will get there, try and stay positive and keep in touch with the forum, it helped me immensely in the early days.
Take care, Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Julie
I had RTX for the first time in Oct and Nov last year. Went to my Spec on Friday and I am not going to be
given RTX for a second time, as like you I have seen little benefit from it. I also like you become confused you
feel " why am I not feeling better, others do so why note me?" She appears to think that I also may have
Fibromyalgia - so now looking at diff tablets again, with a possibility to start on MTX to give another chance, as
this did help me but it upset my liver.
Welcome to this site. I am from Somerset married and have 2 children diag in 2008.
Ailsa,
How are you doing ? any better ? you will have been on half term recently. Let us know how life is
treating you
Rose x
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