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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Belinda
I think everyone is scared of taking new drus, me especially. So don't ever think you are on your own. I agree that you and Poppy are very brave and I admire you both for going ahead with it.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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sheila_G wrote:Hi Belinda
I think everyone is scared of taking new drus, me especially. So don't ever think you are on your own. I agree that you and Poppy are very brave and I admire you both for going ahead with it.
Sheila x Thank you Sheila. It means so much to be here with everyone that understands. Thank you again Belinda xxx Treat others how you wish to be treated!!
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Poppy,
sorry i can't help with the Rituximab, but i can see so many have helped you.
Belinda, just wanted to say i am the world's worse at starting a new drug, when i was diagnosed 18 months ago the shock of that and having to start on Methotrexate led me to lose over half a stone in a week with the stress,
now i have just started Humira ( two weeks in ) and my lovely Rheumy Nurse knows the state i work myself up into, so she did my first injection for me rather than the Community Nurse come in who i wouldn't have know. i felt more confident with her.
these drugs are powerful and a lot to take in.
hope this is the drug that works for you,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Poppy and Belinda
Just to stay I have come on today and read both your posts with interest, and support.
Thank you Poppy for telling me all the relevant 'bits' plus Belinda we should be going down
the same route at similar times.
Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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suzanne_p wrote:hi Poppy,
sorry i can't help with the Rituximab, but i can see so many have helped you.
Belinda, just wanted to say i am the world's worse at starting a new drug, when i was diagnosed 18 months ago the shock of that and having to start on Methotrexate led me to lose over half a stone in a week with the stress,
now i have just started Humira ( two weeks in ) and my lovely Rheumy Nurse knows the state i work myself up into, so she did my first injection for me rather than the Community Nurse come in who i wouldn't have know. i felt more confident with her.
these drugs are powerful and a lot to take in.
hope this is the drug that works for you,
Suzanne x Hi Suzanne I cannot tell you all how your helping me, knowing i am not alone. That was really nice of your Rheumy Nurse, can understand how that would make it easier for you. My nurse knows how I get myself stewed up as well, but then she says she is not surprised because if there is a side effect, I always get it lol. I have all my fingers crossed for you Suzanne that Humira really works for you sweetheart. Love Belinda xxx Treat others how you wish to be treated!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Rose-B wrote:
Hello Poppy and Belinda
Just to stay I have come on today and read both your posts with interest, and support.
Thank you Poppy for telling me all the relevant 'bits' plus Belinda we should be going down
the same route at similar times.
Rose
Hello Rose We can support it each other hun. It is definently helping me knowing I am not alone. Thank you Love Belinda xx Treat others how you wish to be treated!!
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 119
Location: warrington
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Hi just been reading thru all the posts, I think i am failing with the cimzia injections and speaking to rhemu nurse yesterday she wants me to take next injection of cimzia this friday then ring her monday to let her know how my joints are. if no better then she will put the wheels in motion for me to try Rituximab. myhands are swollen and painful so its quite painful to type. bare with me. I hate the thought of yet another treatment. I did feel good for quite a while with the cimzia but then got nasty bug sore throat earache headaches so missed out one injection but since starting back up again painful swollen joints so consultant thru in plaquenil and i have had awful heartburn so stopped that. I seem to be working my way thru different things tried mex, sulthasine, humira. I hate it when you have to stop then wait for whatever to work its way out before starting on the next. def a roller coaster. its just helpful to know how others feel and I know whatever happens next i will go into it with positive thoughts that this could be the one.
sue v xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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volfram wrote:Hi just been reading thru all the posts, I think i am failing with the cimzia injections and speaking to rhemu nurse yesterday she wants me to take next injection of cimzia this friday then ring her monday to let her know how my joints are. if no better then she will put the wheels in motion for me to try Rituximab. myhands are swollen and painful so its quite painful to type. bare with me. I hate the thought of yet another treatment. I did feel good for quite a while with the cimzia but then got nasty bug sore throat earache headaches so missed out one injection but since starting back up again painful swollen joints so consultant thru in plaquenil and i have had awful heartburn so stopped that. I seem to be working my way thru different things tried mex, sulthasine, humira. I hate it when you have to stop then wait for whatever to work its way out before starting on the next. def a roller coaster. its just helpful to know how others feel and I know whatever happens next i will go into it with positive thoughts that this could be the one.
sue v xx Oh wow Sue, your having a rough time too. Your right it is a rollercoaster ride for us all. You sound like me very sensitive to the meds. Really sorry Cimzia is failing for you, they dont like being stopped and re-started unfortunately. I have my fingers crossed for you that Ritux is the wonder drug for you. Love Belinda x Treat others how you wish to be treated!!
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Rank: Advanced Member  Groups: Registered
Joined: 1/19/2011 Posts: 32 Location: south yorkshire
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Hi everyone,
I too am waiting to go on Rituximab, saw the specialist nurse 3 weeks ago and she told me I would have first infusion within the following 2 weeks, well nearly 4 weeks in and never had an appointment
for my first dose, thought I would give the hospital a ring and the nurse hasnt even sent my paperwork through yet for me to start. I am very upset about this they just do not seem to be interested in
patients well beings, this is not the first time I have felt let down by my RA team, what to do ???
Joe xxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello joe
I am in same position as you saw RA nurse on 9th Sept and still now word either. So 3 wks. Can we
start a new post which shows our delights / problems with RTX ?
Rose x
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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I'll be joining you soon, as I have my 1st ritux on Tuesday. I have had to change from infliximab due to worsening psoriasis - which only started after I started on inflix. and to be fair - I am very apprehensive and just a tad petrified  but making out to my family that it's all cool and I'll drive myself there and 'no' they dont need to worry about me or come and sit with me. worse than that tho - is the fear that it wont be as effective as the inflix and what will I do then?  time will tell!
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Good luck Beth
Lets start a new post on RTX after the 3 of us started on it to keep / share our hopes etc.
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 119
Location: warrington
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Hi I would certainly be interested in how you all get on with RTX. I dont get to post much but like to read up whenever I can. this forum is so good for us isnt it. I try and stay positive but inside am churning up and always worry what will happen next.and would like someone to take this away and say do this do that and hey presto you can get back into life again pain free.
good luck for Tues Beth do let us know how you get on will be thinking of you.
sue v xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Beth
Everything crossed that the Ritux is a wonder drug for you after all your problems.
Just a little word of caution - please don't drive yourself to the hospital. Everyone reacts differently to the first infusion and you don't need the extra stress of wondering whether you will be able to drive home. Even antibiotic infusions can upset your equillibrium - so even though I could be said to be nagging - DON'T DO IT!
Lots of love
Jeaxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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bethbrown wrote:I'll be joining you soon, as I have my 1st ritux on Tuesday. I have had to change from infliximab due to worsening psoriasis - which only started after I started on inflix. and to be fair - I am very apprehensive and just a tad petrified but making out to my family that it's all cool and I'll drive myself there and 'no' they dont need to worry about me or come and sit with me. worse than that tho - is the fear that it wont be as effective as the inflix and what will I do then? time will tell! Good luck Beth. I soooo know how your feeling sweetheart. I will have everything I can crossed, for you. I do agree with Jean please dont drive to the hospital on your own, it will just be one more thing to worry about. Sorry hark at me, your braver than me I have not yet taken the leap totally on Ritux yet. Will be thinking about you. Love Belinda xxx Treat others how you wish to be treated!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Rose-B wrote:
Good luck Beth
Lets start a new post on RTX after the 3 of us started on it to keep / share our hopes etc.
Thats a great idea rose... Love Belinda xxx Treat others how you wish to be treated!!
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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thanks all. I will make sure I have a lift to hosptal! (thanks Jean for wise advice)
Got books, mags, etc to keep me occupied and one letter to write to a friend from the 60's who I have just been in touch with again after a few years sparse communication. Shame I can't take a laptop in with me (if I had one!)
Will keep you posted.
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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well - it's done. All went fairly ok. Iv steroid, paracetamol tablets and a piriton tablet to begin with 45mins prior to ritux starting. The infusion had to be stopped 1 hour in, as I was beginning to get very itchy on my face and head. I mentioned it to the staff but they had already noticed, as they keep a very close eye on you. I had more IV steroid and then IV piriton, which stopped the itching immediately  , 1/2 hour wait and then infusion restarted. I also then had a slightly strange feeling in my throat but nothing to worry about - I just made sure I drank plenty of water and had ice cream too! I felt exhausted when the infusion finished, which is strange as I had sat about in a chair all day but I suppose that's a result of tension build up waiting for the treatment. A very good, kind freind came and sat with me in the afternoon and gave me a lift home - so all ok. I have now been up since 3am and am wondering if this is a result of steroid I wont be as concerned about the next round of treatment now and just hope it is as effective as the inflix at controlling the RA. Hope that helps the rest of you awaiting this treatment. will keep you posted on progress. Thanks girls for advice not to drive myself - it would not have been sensible!!!!!!!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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bethbrown wrote:well - it's done. All went fairly ok. Iv steroid, paracetamol tablets and a piriton tablet to begin with 45mins prior to ritux starting. The infusion had to be stopped 1 hour in, as I was beginning to get very itchy on my face and head. I mentioned it to the staff but they had already noticed, as they keep a very close eye on you. I had more IV steroid and then IV piriton, which stopped the itching immediately , 1/2 hour wait and then infusion restarted. I also then had a slightly strange feeling in my throat but nothing to worry about - I just made sure I drank plenty of water and had ice cream too! I felt exhausted when the infusion finished, which is strange as I had sat about in a chair all day but I suppose that's a result of tension build up waiting for the treatment. A very good, kind freind came and sat with me in the afternoon and gave me a lift home - so all ok. I have now been up since 3am and am wondering if this is a result of steroid I wont be as concerned about the next round of treatment now and just hope it is as effective as the inflix at controlling the RA. Hope that helps the rest of you awaiting this treatment. will keep you posted on progress. Thanks girls for advice not to drive myself - it would not have been sensible!!!!!!!  Awww Bev i am really really pleased it all went ok for you. It definently sounds like they were watching you and looking after you very well indeed. I have everything crossed that it starts to do its job. You are far far braver than me right now. Gentle gentle hugs Love Belinda xxxx Treat others how you wish to be treated!!
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Well done Beth. That's over with and you should start to feel better soon. I think the steroids were, possibly, responsible for your sleepless night as they give you a great high and leave you feeling full of energy.
Sheila x
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