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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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We have failed to get the drug my consultant wanted me on. So we are going to try cyclophosphomide. When I talked about it on the ward, they all nervously smiled and basically muttered stuff around "rather you than me" and this doesnt fill me with confidence. Had a rotten weekend RA wise and today got the call. they want me to have the drug originally wanting me in 2 days before christmas... but I have asked for January instead to which they agreed. I wasnt exactly jumping for joy. I just am scared. Do you understand? Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Oh Jenni
Of course we understand. It is a terrible time for you. I can't believe they expected you to start this new treatment 2 days before Christmas. Jenni you are always in my prayers and I know you must think well, thanks but they're not working but God works in mysterious ways and I am sure He is giving you the strength to cope with all the things you have to cope with as well as having a young family. Keep believing Jenni. I wish I could come and see you and give you a big Christmas hug. You are such an inspiration.
Lots of love
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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This is the same drug that Alan had Jenni. Go for it-why not? I'm glad you stuck your guns out for January. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Sorry to hear you have not been able to have the drug you had planned. Hoping that the cyclo ... does the trick and gets you out of the horrible RA rut you have been in for so long. You deserve some good luck Jenni and hoping it comes your way in the New Year - it sounds a long time away but it will pass quickly. Thinking of you xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Jenni
Of course we understand how scared you are, it is only natural and you have been through so much with such an amazing upbeat attitude. I echo Sheila's words, and will pray that the new drug is successful for you and that you have a wonderful Christmas with your family.
Best Wishes
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
totally understand how scared you feel .. and am so sorry that you didn't get the drug that you wanted.
i truly hope this new one give you the relief you need,
January sounds a lot better than two days before Christmas.
will be thinking of you and hoping that this one will work for you soon,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Jenni
I'm sorry you didn't get the drug you originally wanted. However you never know the one you are due to have might turn out to be the best one for you. You have to cling on to hope. Of course you are scared. Who wouldn't be. Everyone on here including me will be rooting for you. I'm sorry other people have said negative things about the drug. It's not very helpful to you with little choice but to give it a go. As you will already know (but I'm just reminding you) everyone is different and what doesn't suit one person might suit another. I really wish you luck with the treatment and will be waiting anxiously to see the outcome. I have a colleague at work with RA and there were a couple of years when it spiralled out of control and his dmard drugs seemed to stop working. After trying a few alternatives he eventually found one which worked for him just at the point when he was beginning to despair and he has now been well enough to work part time again for over 3 years. I hope this gives some hope.
Love from Naomi 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 Jenni I think it's great that at least something is happening as a matter of urgency which may just give you the respite you so desperately need. Okay, so it's not one of the new JAK/SYK drugs yet, that could still be an option for the future. Cyclophosphomide has been around a long time and is well tried and tested, as you know. We all worry our socks off with new treatments but it's especially difficult for you after many bad reactions along the way. You will be in good hands (they wouldn't dare be anything else when they see your medical notes ... and red boots  !) and I'm sure it's worth a try rather than risking ongoing joint damage on top of existing problems. Had I not opted for Rituximab I would have gone with Cyclophosphomide as it's the only drug from the earlier batch that I haven't had. The consultant gave me the option but I knew she wanted me to have the Ritux so I went with it. Sometimes you just reach a point with the RA when you say "sod it all" and just go with it. It's an endless battle of RA and all its associated travelling companions, drug treatments, blood tests etc. What the heck, there's not much to lose and potentially much to be gained  Pecker up chuck  Lyn xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
Sorry to hear that you have not got the drug that you hoped for. However, very pleased that you are going
to try a different drug.
Of course we definately understand how you are feeling, but surely your luck must change.
Thinking of you Jenni
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Jenni
Totally understand how you are feeling its only natural to be scared..Its a shame that you didnt get the drug you wanted but maybe your meant to have this one. Thinking of you and hope you have a lovely Christmas and January will be a new start for you xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi Jenni,
of course we understand and can empathise with how you feel.
but lets hope and pray that this is going to be the drug that works well for you and brings you some much needed relief.
as others have said, you are overdue some luck drug wise, to say the least.
keep positive, difficult I know, but you are an expert at it!
thinking of you lots
Diane x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Jenni
That's really awful news not getting the drug you desperately need so much.
I can understand you feeling scared about trying cyclophosphomide, after all the horrific drug reactions you have had in the past. it's only natural you will be apprehensive.I just hope it brings some relief from the wretched pain you are in. Everyone is behind you, thinking of you.
take care and fingers crossed
Love
Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi Jenni
So sorry you didnt get the drug you wanted. I really hope this different drug works for you.
Good luck
Louise
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni,
Sorry to hear you can't get the drug they wanted you to have, but I hope theh cyclophosphamide works well for you. We can all understand you being scared, but fingers crossed this drug will be good for you.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jenni, Sorry about them not giving you the drug you had hoped for, but hope you get some benefits from the one they`ve prescribed. I haven`t heard of it - is it similar to cyclosporin? Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jenni,
Course you're scared, perfectly natural considering the reactions you've had before. But thing is you're really brave as well, so put on your bravest face and positive mental attitude after Xmas and go for it, we'll all be rooting for you. A bit much saying to go in 2 days before Xmas who wants to risk spending Xmas in hospital, bet the roast spuds are terrible! Good luck Jenni, thinking of you.
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Hello Jenni Sorry I am only just replying, and that I have not been around at all lately as struggling with things at moment. Well you ALL know how scared I have been about the drugs so yes absolutely understand. Really sorry you never got the drug you wanted to try and I feel it is really bad that you did not. If anyone deserves to have the right treatment it is you. I think you did right in going for it after christmas as it is the last thing you need just before. You takecare and have a fantastic christmas with your family and then in the new year with positive thought this new drug will be "your miracle" . Love Belinda xxx Treat others how you wish to be treated!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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have a good christmas and look forward to the new year, this just might be the one that works i will be thinking about you you are in my thoughts and prayers we are all hoping it works for you sylvia xxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 64
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Hi Jenni
We are all scared and I feel that I am even more scared than anyone else, we can all admit it on here. I am sure that you are in good hands and I wish you much success in 2012 with this drug. Have a peaceful Christmas with your family.
regards
Val
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Thanks so much for the support Our home is full of Christmas and I love it! I'm struggling ra wise but loving the time of year- we have a story by candlelight from the Christmas book box- tonight it's the 'smelly sprout' how to be a velvet bulldoser
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