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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone I have failed on Humira. Been feeling ill lately. Had my Rheumy appt on Monday and was told I'm back where I was four years ago He gave me a depo injection which is helping thank goodness as i have to take Tristan to school every day Can't believe it. I've been feeling very down lately but haven't seen my gp as yet. Well, the next step is Rituximab. Feeling apprehensive to say the least. Anyone on this?? How have you been? Sorry this is not set out well but my laptop had broken and my son is trying to fix it so this is on my I phone. I hope everyone is well as can be. BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Barbara,
so sorry to hear Humira hasn't worked for you,
i am sure you will get some feed back on Rituximab soon. totally understand your apprehension .. i'm like in on each new drug and nothing anyone says makes any difference to me, i have to work my way slowly to start on a new one.
glad the depo has helped,
let us know how things go.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Barbara Sorry to hear that the Humira hasn t been able to bring the RA under control. its not surprising its making you feel so low as you say might be worth having a chat with your GP. I don t know much about Rtx. but there might be some useful advice on previous posts within the drugs section. I was out with the pugs yesterday morning, and met a lovely woman walking two gorgeous little staffs, and they were quite small too although fully grown. It was only nine ish and said she had been out earlier walking her three pugs !! and will walk the other three !! staffs later in the morning. When I told my son in the evening, when he came in from work, he said how could she make a fuss of them all  Had to agree, give your little ones a big kiss from me  Hope you start feeling a little better very soon, Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thank you Suzanne and Julia I cant get a gp appt until 8th November!!! its getting worse at our surgery, its just growing all the time, and we now have 7 gps, thats without the two nurses and many receptionists!!! I need to have my flu jab and my consultant has recommended the pneumonia one too. I have had pneumonia twice within a year, when I asked one of the gps if maybe my weakened immune system could be the reason and was told no, thats extremely unlikely!! So, will they be prepared to give me the pneumonia one?? Our pugs are fine thank you. How about yours? Do you have males or females??? Our two are rescue, and the boy barks at nothing when we are out. Few other things, not the place here for that though!!! Not long taken them for their last walk, feeling very tired now, I had the two little boys I look after until 7.20pm as their mum had an urgent meeting at work Really need to cut my hours down, but its so difficult when you are self employed  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Barbara
Having to wait that long for a GP appointment is just ridiculous.....especially when you have a severe and chronic illness like RA. My surgery can usually give same day telephone appointments or face to face within 3 days. I thought most GP surgeries were the same. I think a letter to your MP is in order.
I completely understand your feelings about having to change drugs. So much depends on the drugs working......being able to work, do normal things like walking and getting dressed easily and independently, so it's not surprising that this is a difficult time for you. I really hope the Rituximab will work wonders for you. Please keep us posted on how you're doing with it. It's always interesting to hear other people's experiences of different drug treatments as you never know if you might end up on the drug too. Very best wishes from Naomi, XXX
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Barbara,
just to let you know i've just had the flu jab and i had the pneumonia jab in August, it was advised by both my Rheumy Consultant and asked my GP who also said definately have it done.
crikey 8th November is a long time to wait to see the GP, my Surgery is a small village one and i can get seen quite quickly, you can either pre-book or ring on the day.
can you ask to be put down for a cancellation appointment maybe?
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Barbara
To wait that long for an appointment is appalling, I know I am very fortunate with my practice but have been to others over the years, which had a lot to be desired, but never that long. Is there any chance of changing to another practice, especially with having RA ?
My two pugs are fine thanks, Nelson was a " sort of " rescued boy with quite a few psychological disorders ! but he's getting better thank goodness. My pug Bosley was very ill, he was only six, and died and I found a local lady with a pug for sale and just had to have her I just couldn t bear just having one pug, I m terrible. I have recently got back to work, as I am self-employed too so fortunate that the pugs come with me to work, they have a good walk/run and settle down quite well in their bed during the day, with a few treats of course along the way.
Hope you are having a good weekend.
Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, I hope you all had a good weekend I rang today to get a nurse appointment for the flu and pneumonia jabs, I can have them done Saturday morning. My other appointment is at 9 am on 8th November still. I could get an emergency appointment, but I dont feel comfortable asking for one as its not really an emergency. I'm feeling very exhausted, and today while out with the little boy I felt very hot and faint (its very mild here in London) luckily I was near Starbucks so went inf or a coffee and a sit down before I took him up to the soft play area I think I'm just a bit rundown, and working long hours probably doesn't help, but the family are selling their house and moving away soon, so maybe after Christmas I won't be working much, just two days with Beau, 8.30-4pm that nothing to now!!! I do every day from 7.30am-6.30pm Julia, re pugs, Leo is a handful!! he had no socialisation, he has no manners regarding food, and barks loads when we go out. He's 6. Ruby is easy, she loves everyone and everything, plays with her toys while Leo looks on in disbelief!! she is nearly 3, we have her papers so lots of information on her  BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Barbara The 8th is a long time away, I don t think you should feel too guilty really, you have got a chronic condition and can understand your reticence as you don t want to make a big fuss but we do tolerate a huge amount with our RA. See how you go and if things get really tough, give them a call. Poor old Leo, something must have happened in his previous life - poor chap. Nelson has a huge issue with food, before he came to me he lived with a Basset Hound who intimidated him and consequently couldn t eat and was as thin as a rake. Well within about two days, and trying out chicken roll, he now eats everything don t ask and the noises he makes when eating are much to be desired. He also had a " serious " breathing problem according to the previous owners, but it was all stress and again went away with a day or so. Take care, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 7/10/2010 Posts: 43 Location: Little Dewchurch, Hereford
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 Hi - I've not been on line for some time - largely because I am busy again now Rituximab has kicked in I too failed on Humira & was really fed up as Consultant initially talked abut going backwards & adding back in a 2nd DMARD He then offered me a choice between that or Rituximab - I'm so glad I went for the Rituximab. Having my 5th pair of infusions in December so must be over 2 years since I started I've found it really helpful, though it does take a little while to kick in and i find it starts to wear off at about 6 months or just before - had to remind them re last lot as they changed policy to wait & see when needed instead of offering after 6 months but this time I'm only just over 6 months. Best thing is the larger than pea-sized nodule at the base of my right index finger which was causing a lot of trouble ( it was the physio who sent me back for review to the Consultant instead of Rheumy nurse which led to the change in meds) has almost completely shrunk away since I started Rituximab ( got loads of new little less troublesome nodules elsewhere but nurse sad could be RA or could be due to methotrexate - can't win!) I had a bit of a reaction to my first dose but was still able to complete it (although very slowly) & have been fine since with further doses - they give me IV piriton & steroid bolus as well as the standard IV infusion of a different steroid which is in my hospital's protocol (Hereford - Fred Bulmer Day Unit staff are great!) All those steroids make me feel great the next few days if a bit spacey (does that happen to everyone else?) So hope you decide to go for rituximab - & good luck!
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hi, Sorry to hear your drug failed. I'm in a very similar situation as my drug Cimzia has failed & I'm now waiting to start Rituximab too. Lets hope we both gets some relief from this drug. Good luck. I've been off work since the 15th of October, like you I'm feeling exhausted & run down. It has taken me until this week to stop thinking & worrying about work. Are you able to take some time of? Hope things improve for you very soon. Take care Love Lou xx I love people who can make you smile even when you do not feel like smiling. x
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