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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Jenni, I just don`t have any words to express how sad I feel for you that this latest treatment has not helped you either, when so much hope was riding on it. You are a very strong person, you have your faith, and your family, and sometime soon you will find some light at the end of your tunnel - I don`t know how, I don`t know when, but through the medium of this forum, I know you. Take care, Kathleen C 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 so sorry you are going through this. I looked up this new treatment and research suggests that it can be really effective even when nothing else seems to have worked so please don't give up. People on here will never give up on you. I will be hoping and praying that this will work for you. Sending my love to you and your family X
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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There are no words Jenni to say how sorry I am for you and your family.
I have just googled Prosorba Column because I have not heard of it and it sounds a really good option when all other drugs have failed. The only other option is to take minocycline long term which I believe is used for R.A.
Thinking of you and just hope there is something out there for you
love and hope
Rebecca xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I so appreciate your kind replies The endocrine dr has been in this morning and they've agreed to put me on the progesterone only pill which should help me a lot with the flair ups I think at least. I'm seeing dr Edwards who is snr rheummy I've told the endo dr I need the 2 teams to work together and make a plan My bp still wobbly but the trend is coming down and more controlled Will be in touch Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Jenni. Yes please do keep posting because I can't stop thinking about you. I'm so frustrated about the treatment failures that you have endured and it really makes what I'm going through seem petty in comparison. If I could send you a hug I would and if I could give you a bit of my strength I would but I can't. I can send love though and tell you that I will continue to think about you and that I will keep on hoping and praying. So please keep fighting this and never give up hope. Love from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Good to hear the latest Jenni, sounds good positive stuff from your team.
Please keep us posted as ever, always thinking of you.
With love Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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No There is no option like column or plasma None The ra is very aggressive Very uncontrolled I have got to go home on slightly new things I can hardly believe I've been talked into having it Do you all think I'm a right wimp I've agreed to prednisolone instead of hydrocortisone I've agreed to 10mg of mtx And And ( wince ) 25mg of enbrel how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Dear Jenni, how could you ever be a wimp??? You have so much to contend with, I couldn't even begin to imagine how you feel right now I sincerely hope that you get some relief from the pred, and that the mtx and enbrel don't cause you even more heartbreak. I wish I could give you some strength (physical) to help you cope Jenni. We are all thinking of you, praying for you and your family, and so hoping things work out for you (((((((hugs))))))))) BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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A wimp, NEVER! Heroine more like! You have had to fight so hard and you are still fighting so don't even begin to think you are a wimp. I'm so glad that things are being tried still. This horrible disease is just so unpredictable so maybe a new combination will work differently to the elements in isolation. Keep going Jenni X
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Jenni, hope things have been a little better for you today.
Love Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Jenni, hope things have been a little better for you today.
Love Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Sorry I asked you twice, I know your hearing is fine  Julia xx
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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
Hope that this new combination works out for you and gives you some relief without giving you a whole lot of other problems.
You are certainly not a wimp!!
God Bless
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
A wimp indeed, give me a break. You are braver than the whole of us put together. Desperate times means desperate measures. Give the Enbrel a shot (pardon the pun) again. At least you know what to look out for this time and you never know .............
Keep your chin up and you will soon be home.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Thank you I'm home so everything looks brighter Funny how that works! I think the enbrel is worth another go Im going for a 1/2 dose to try Couple of wks grace actually Til I take it I'm just grateful really there's a plan The ra has caused 3 more chunks of damage in my right knee in the 6 wks between now and that MRI I had The left knee obviously 'destroyed' and having a full knee rePlacement at the end of april time I am so pleased to be home with my lovely family Going to see Gemma tomorrow I have meetings at gemmas place tomorrow and I'm trying to be well enough really to do this Ive been pretty uppety today in myself and I'm not that sure why?! Feeling better about things That makes a big difference how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 1/7/2010
Posts: 11
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Hi Jennie,
I am really pleased to hear that you are now back home once again, after yet another ordeal, I read all about your latest troubles and sincerely hope that the new medication combination will work for you and make you feel well again.
You are a very special person and I can see always ready to give anyone good advice, which you did for me on several occasions, which has helped me alot.
I send you all my best wishes and hope that life will bring you lots of days filled with sunshine and happiness in the future.
Lots of love,
Kathy C
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hello Jenni
I've not been on here for a while so i've only just seen your post. I'm so sorry that you are back in hospital again and totally understand what you are saying, it must be so very hard for you and your family to go through this time and time again.
I wish you well and i hope that what ever decision you make will be the best for you all.
Love Shirley x
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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 So pleased you are finally home with your lovely family. Sue
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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So pleased to here you are home with your family Jenni Hope all goes well at Gemma's meeting tomorrow. Love Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 74
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Hi Jenni,
Just caught up with this, as haven't been on for a while. Your strength and understanding of the disease never fails to amaze me, and I admire you very much for your courage and determination. All this and you are there for your family and for others on the forum. You are one lady with a big heart. I hope things improve for you very soon, and will keep wishing for you.
Take Care
Candy
x
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