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Rank: Newbie
Groups: Registered
Joined: 5/3/2012
Posts: 3
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Hi, my name is sharon and I am a new member. This is the first time I have ever used a site like this. I dont do facebook or twitter, I dont usually like people knowing my stuff unless I want them to. If I analyse myself I suppose I've been avoiding other people with ra in the hope it may one day just go away. Stupid really as after nearly 13 years with it I should realise it is here to stay. Doubly stupid as a was a Staff Nurse/Midwife in a previous life and my father had ra very badly. I woke up with ra one bright sunny morning, just couldnt move. Was perfectly ok the evening before.
Enough of that I am 62 with a lovely, helpful husband, 3 beautiful grownup daughters and 5 equally beautiful grand children. I am on Sulphsalazine and Leuflunamide. Have been on Methotrexate, Enbrel and Humira all of which I reacted to badly with a horrendous rash. I have now been offered Rituximab as I am Rheumatoid Posivitve but am hesitating. Nurses and doctors make the worst patients as we tend to anayse everything like side effects, probabilites of it working and will I have a reaction to this one too.
Am I being too cautious? Worrying too much? My husband and daughters say I should go for it and just because the others worked but I couldnt stay on them it doesnt mean this one will be the same. Have I had enough of all this drug trying and should just put up with what I have?
Gosh I have been ranting. Sorry. Just need more opinions, I suppose, from people facing the same problems. Would love to hear them please.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sharon, and welcome to the NRAS forum. There is a lot of info, empathy and humour on here, and always someone to provide a listening ear when we need it. I`m sorry I can`t offer any advice about rituximab, but no doubt someone will come along who can. I`m currently taking humira, having failed on various other things, and it has made a huge difference to me in terms of mobility etc. Luckily I have had no side effects as such, but had nasty reactions to some of the others. While I was very uneasy about trying the anti-TNF therapy, it was a case of Hobson`s Choice, as at the time I was having to use a wheelchair, couldn`t pick up my baby grandson etc. etc. Ultimately the choice is yours, but it`s good you have such a supportive family. I`m Kathleen, age 61, married to Nick for over 40 years now. We have two grown-up sons, and two lovely grandsons, aged 7 and 5, who are the light of our lives. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sharon,
Welcome to the forum, you'll get lots of advice and support on here.
I am 62 and have had RA for 11 years. I was a nurse too, specialising in paediatrics.
I know what you mean about trying new drugs. I had 7 years of trial and error with different drugs before starting humira 4 years ago. It worked well for me and still does, but it is not as effective as it was and they are trying to get me to switch to something else. I just feel I don't want to go there again, trying and failing on new drugs and would rather stick with one that I know suits me.
It's your decision as to whether you try the rituximab or not ,and whatever you decide, I hope you can get your RA under control.
Looking forward to getting to know you.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sharon,
welcome aboard.
i think with each and every new drug it is daunting so say the least. i for one go into meltdown when faced with this.
i failed on Methotrexate and Hydroxy ( although still on them both, low dose of Methotrexate 10mg ) and was faced with trying an Anti-TNF. i was diagnosed two years ago and found the forum a huge support re making my mind up to go for Humira .. which i did last August. fortunately it has worked well for me, although my bloods do fluctuate generally i feel well.
lots have tried Rituximab, go through the Drug Section and i'm sure you will find some stories which may be of help. i don't feel you should just give up and settle for how you feel now, we have come a long way with meds, although of course it's a very personal choice.
hope whatever you decide is right for you,
keep posting,
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Sharon Welcome to the forum where you will find lots of support and encouragement. It is fantastic that you have such a supportive family. I am 57 and have been diagnosed nearly 6 years currnetly on Methotrexate and Enbrel which is working very well for me at the moment. I also have a very supportive husband, three grown up children and five soon to be six grandchildren. Look forward to hearing more from you. Best Wishes Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hello Sharon and welcome, I am fairly new on here, but they are a very friendly bunch, offering loads of help! I have tried rtx,began it last Nov. unfortunately I only had minimal success with it. I had no side effects at all from it, but as I only have a low ra protein count in my blood I don't even think the rheumatologist thought it would work. However that was the next step according to the nice scheme of things!! I have recently started abatacept infusions, so fingers crossed. It is a big decision starting something new, and one we all have to make. Good luck with whatever you decide. Zena x.
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Sharon,
I am fairly new on here. You will find lots of very knowledgable people, I've learnt a lot in the short time I have been a member.
I can't help with the meds, but just wanted to say hi.
I'm 52 married with two grown up children.
At the moment I am on Methotexate and doing fairly well.
Hope all goes well for you.
Mary
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sharon Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS! I'm Lyn, married to Mike, we have four 'kidults' Abby 24, Ian and Jake 18, and Louis 17. We live in north west Lancashire. I was diagnosed with RA 24 years ago and have since run the gauntlet of medication, had several surgical procedures along the way and looks like more in the offing! Currently on a changing variety of meds after recent failures but permanently on Prednisolone and Naproxen and a bucket load of other stuff! I was previously on anti-tnf for 8/9 years (Infliximab and Enbrel) but had to stop due to lack of efficacy and various other problems along the way, and just failed on Rituximab. I wasn't confident about the Rituximab from the outset; the idea of depleting selective mature B cells just didn't sit right with me. The outcome was unsatisfactory and I felt no benefit whatsoever. My thoughts are that as the two anti-tnf drugs worked well it suggests, in my case, the cause of inflammation is the tumour necrosis factor. My consultant agreed with my somewhat simplistic analysis and I am now waiting to start my third anti-tnf Cimzia. Currently battling with worsening lung/breathing problems so all on hold for now until investigations complete. Very frustrating! Drugs come down to personal choice but the decision can be a very difficult one. Life will be so much easier when personal medicine becomes available and trial and error can be put to bed once and for all! Look forward to getting to know you, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Sharon and welcome to the forum from me.
My name is Paula and I am just about coming up to my fourth anniversary of being diagnosed with this illness. Still don't think that I have come to terms with it yet and don't really think I ever will.
I thought it came on quickly with me but when I read of going to bed normal and then waking up with full blown RA the next day I realise that it didn't really hit me wham bang like I use to think.
I refer to my pre RA days as being my previous life like you, I look at photographs of this person smiling at me, full of life and think to myself.....if only you knew then what was waiting around the corner for you. But I didn't and in some respects should be grateful.
Just want to add that I think that being a midwife must be the most wonderful job in the world to have and I envy you so much. The thrill of seeing a new little person coming into the world must be so lovely and knowing that you helped their arrival. I cry every time I see a baby being born on the TV I just can't help it. Two people do what they do and then 9 months later out pops (well not the right word used there I suppose) a new little life. People say that miracles don't happen, but they do!!!!
Keep Posting
Love Paula
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Rank: Advanced Member
Groups: Registered
Joined: 5/22/2010
Posts: 51
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Hi Sharon,"Yes" it is frightening all these drugs we have to try out,some work for a while then back to square one to try something else.Do not give up i have been in the same situation as you.At last i feel as if i can make arrangements now eg.going for a meal,visiting people.I myself take Suphsalazine, every day prednisolone 20 mg every day Methitrexate 20mg once a week & enbrel injection once a week.When i am in pain take co/codamol pain killers even morphine at times.
So "Yes" there is light at the end of the tunnel for you.Just do not give up Sharon.
Wishing you all the best for your future
Valerie-R
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Rank: Newbie
Groups: Registered
Joined: 5/3/2012
Posts: 3
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Hi Thanks for all your lovely replies. It is good to know that other people have the same worries and conflicts as I have. Although sad that so many people have this horrid disease. I will probably go for the rituximab but not just yet, still waiting for the rash to clear up from the last anti tnf I tried. I have only a couuple of deformaties and I am sure that is because I was diagosed early. I knew my GP from working with him in the hospital environment so convinced him to do blood tests and get me an early appointment with the Rheumatologist. The first appointment was four months away and I knew that wasn't good enough because of my father's experience. Working as a midwife was great, I enjoyed it but it was very hard work. 12 hour shifts and quite often we were unable to have a break, just eating a sandwich on the run. My eldest daughter is a midwife in the same hospital as I was. She had twins in October 2011, her first babies. She also delivered my middle daughters two babies, the youngest born at home and was the midwife present at my youngest daughters c section. We are a close family. One last question, why is it that when our joints are assessed at our ra appointments, feet dont count towards the assessment. My feet are some of my worst joint pain. All the best. Sharon 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Sharon I've tried to find the post that our lovely Lynn put on here some time back. Couldn't find it, then remembered she had posted about it on the NRAS HealthUnlocked site and I found it there. Hope it will answer your questions. http://nras.healthunlock...-Activity-Score-----DAS
Paula
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Sharon. I'm Naomi, aged 47, living in Devon. I have one son, Theo 22, who lives in Taiwan. Welcome to the forum. I didn't really do facebook and forums either before I got RA but now I think it's one of the best things I have ever done. I only knew one other person with RA when I was diagnosed last August and he didn't really want to discuss it, so here I was all alone with a terrifying new life that wasn't welcome or planned. Through Face book I have made a friend in America the same age as me, diagnosed at the same time and although we've only known each other for 6 months, I class her as one of my best friends...even like my sister. On this forum I have found there are so many others who really get what I'm going through and who are always here to offer support or advice on everything from symptoms to emotions and drugs to negotiating the NHS. I hope you will benefit as much as I've done from joining up. I'm currently taking Mtx and Hydroxy and I've found when it comes to drugs that if you ask 10 people on the same drug about their experiences you'll likely get 10 different answers. Also reading negative things about a drug can really shape our experiences of it. That's just my view. Good luck with whatever you decide and I hope we'll be hearing from you again. Best wishes from Naomi. x
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Rank: Newbie
Groups: Registered
Joined: 5/3/2012
Posts: 3
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Paula
Thanks for the information. It makes sense now. My feet are very sore at the moment.
Regards
Sharon
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Rank: Member
Groups: Registered
Joined: 9/20/2012
Posts: 23
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Hello Sharon, like you I am a new member who doesn't use facebook or twitter but found myself desperate to talk to others in the same boat. I was diagnosed last year and have tried Methatrexate,Sulphazaline and steroids all of which have not worked. I am now being assessed for anti TNF, infliximab. Like you I am concerned but cannot continue , my RA is just not getting under control and I want my life back. This is a horrid disease but from what I read and am told on this forum there is a light at the end of the tunnel and things will get better. I really hope they do for you too and look forward to hearing about your journey. Take care Julie Boo xxxx
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