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Rank: Newbie
Groups: Registered
Joined: 9/24/2010
Posts: 2
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Hello,
I recently had two infusions of Rituximab, last eight days ago.
I work 16 hours a week and thought I would be back at work now, but I feel very weak.
I see my GP Monday for another certificate, and the work Occ. health Dr Tuesday as my job is on the line re absence.
Can anybody let me know their experience of this drug?
I also inject 15ml of Methotrexate. I could not have the anti TNF as I had thyroid cancer 13 years ago.
Regards,
Evelyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Evelyn
Welcome to the forum.
If you scroll down the page and find the forum link box thing, click on it and find the link to the old forum (near the top) click on it and follow the link to the the old forum. In the members blog section there is a few blogs from members on there about their experiences of Rituximab.
Hope you find some answers.
Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Evelyn,
Welcome to the forum, its a great place and I've found lots of advice and help here.
As to the Rituximab, it might be worth ringing your rheumy nurse and see what she/he says.
I also had my second dose of my second round of Rituximab 11 days ago and although Iwas fine throughout both infusions, on the first one I came home buzzing and besides going straight to bed, the next 10 days I was on a high from the steroids they put in before the infusion and managed to do loads. Then after the second infusion although I had the steroids again by IV at the same time, I haven't had the same buzz and over the last two days have developed a bit of a flare which in turn has made me very tired, I got up today to take tablets then went back to bed until lunchtime.
Also I had a bit of an uncomfortable stomach over the last few days that has sometimes got me up in the night. I just put it down to the drug and am going to give it a bit longer as the Rituximab won't really have started working yet.
I'm also on 20mg of Mehtrotrexate which I take by mouth.
I think we all react differently so it might be worth contacting your nurse or visiting your GP for some reassurance, it could be that you've picked up a bug or something and that probably will need sorting.
In the meantime,
Best wishes
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Evellyn
Welcome to the formum but sorry you have RA.
I have no experience on Rituximab so cannot give you any advice . I hope you managed to find info
to help you on the old forum. I have a good Rhummy nurse if you have it may be an idea to speak
with her. The Helpline on this site is also excellent .
I am Rose aged 56 from Somerset. Diagnosed 2 yrs ago and have been off work since March
this year. Hoping to go back part time shortly. My medication is still not sorted so waiting to
see specialist also very soon.
Keep posting and good luck
Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Just another thought.
Have you thought of ringing the NRAS helpline yet?
There is a network of volunteers who ring members up to talk to them on a one to one basis about RA. There may be volunteers who's been on Rituximab. If there is ask if a few could ring you up but remember that people do respond differently to drugs.
Paula x x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Evelyn Welcome to the forum! Good advice from Paula and certainly worth following up. NRAS hold details of which volunteers have experienced which drugs so there is sure to be someone who would be able to chat with you. Do give it a try  Look forward to getting to know you. Do keep posting  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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Hi
You are washed out after the RTX but it does improve. PLease do get some bloods done in case your cell count has dropped a bit too low (obviously the B ones wont be present but the others).
You will then need to speak to the rheumatology nurse.
From experience, the blood count does start to pick up about a month after infusion but do get a check, also incase you have picked up flu.
It ended up that I was aneamic.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Evelyn
Welcome, im Ceri and still new to the site but think its great for advice and support. I inject 20mg mtx weekly but dont have any experience of rituximab as have only ever been offered mtx. I know its really difficult to hold down a job when your feeling so weak and in pain I hope meeting with occ health goes well for you.
Take care xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Evelyn,
Welcome to the forum.
I can't help with the rituximab because I am on mtx and humira but I hope it starts to work well for you soon.
Love, Doreen xx
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Rank: Newbie
Groups: Registered
Joined: 9/24/2010
Posts: 2
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Hi everyone,
Thank you so much for taking the time to reply.
I must get onto head office as my log in doesn't work for the old site. (Good idea to look at previous posts re Rituximab.)
Yes, a blood test would be a good idea.
Surfing the internet, various sites say it causes weakness in 25% of cases.
As you say it would be a good idea to speak to a volunteer, at the moment I can't summon up the energy!
Thanks again for all your advice,
Evelyn X
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