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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
Wanted to let you know how I got on with the consultant yesterday
Things are dire- really dire RA wise but the consultant is not giving up (which is more than I can say from his registrar who frankly looked rather bored---)
I am to have a huge pulse of steroids
My consultant hasn't done this much for patients but the depo hasn't hit it
the RA is extremely aggressive right now and Im so desperate- now on 100 of zomorph
and still having oramorph on top and still in lots of pain....
its the pain, o o o the pain
Shock news for me was that it was the new drug company itself who have explained they arent keen to give it because of the EU license etc. NRAS are going to have a go at this for me and my fabby consultant.
In the meantime we are to explore 2 options- cyclophosphomide and looking towards bone marrow transplant... my consultant would rather stick pins in his eyes than do bone marrow stuff willingly as the risk is so high.
We arent there yet though are we?
The district nurse came and was shocked at the level of pain and that Im only managing a couple of hrs in the wheelchair a day.... so upped the zomorph from the current 80 to 100.
Im also on the gabapentin higher dose which is helpful but makes me giddy.
Unfortunately we have had a tough day personally here with our beloved middle daughter with complex mental health needs getting into trouble with the law and not being able to understand her actions... plus the new car has had some issues and the tumble dryer blew a fuse and is declared knackered!
At least the cat is happy sat here curled up with Mummy on the bed!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 10/20/2011
Posts: 50
Location: Coventry
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Oh Jenni
I wish you had better news - and you still manage to sound positive .I'm pleased that your consultant is so good and is continuing to explore all the options.I'm lucky too in that my consultant and his team bend over backwards to help and it does make a real difference.So sorry you're having problems with your darling daughter and hope that the police were sympathetic to her needs,it isn't really what you need right now .I hope the morphine increase helps with the pain and that you can get some rest.
Take care - i am thinking about you
Julie XXX
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Oh Jenni
I am so sorry you are in so much pain and will pray that the huge boost of steroids will soon start kicking in.
I am so pleased that the consultant and NRAS are in your corner and trying to find the best solution for you.
You certainly are having a rough time of it at the moment but as always seem to be able to a bright side..............hope the cat is still enjoying your company.
Will continue to pray for you and the family
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Jenni - If I could do anything for you right now I would. You are so brave and accepting of your condition. I pray that your pain will be taken away from you or at least that it is bearable. The steroids should kick in very soon and at least give you a bit of respite. You seem to have a great relationship with your Consultant and he sounds like he is trying his best to get the best treatment for you. I hope you get some well deserved sleep tonight love and that you wake in the morning with much less pain.
Lots of love
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 1/27/2011
Posts: 68
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hope you feel better soon and get some pain relief take care x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Jenni
So sorry to hear that you are in soo much pain. I do so hope that the releif you require comes to
you quickly
Thinking of you Jenni with all your problems. Take care and chin up
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
so sorry to hear what awful pain you are in,
i truly hope that one of the options works for your RA .. your Consultant does sound like he will do all he can.
never rains but it pours eh,
hope everything settles down for you quickly,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Oh Jenni, I wish there was better news. Everything crossed that they can get you that drug.
Hope you get the steroid pulse to help youi soon
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Just don't have any words but, as Sheila said - we would do ANYTHING to take this way and make things more bearable for you. Praying for your beautiful Gemma - and ALL of you. Love you loads xxx
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Rank: Member
Groups: Registered
Joined: 9/29/2010
Posts: 27
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So sorry to hear you're having such an awful time Jenni. Thoughts and prayers are with you.
Dawn
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Thoughts and prayers as ever Jenni - and thinking of Gemma too. Hope the steroid pulse brings some relief for you, and the consultant finds a way forward. Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Thinking of you Jenni at this difficult time. Things will come right ... just hang in there and keep popping pills. Not the answer I know, but until something more appropriate is organised steroid pulses are possibly the only way forward. So sorry to hear anout Gemma, hope things work out okay for her. Take care Jenni  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Oh dear Jenni, I am so sorry too, to hear that you are in such dreadful pain and hopefully you will commence the pulse steroid treatment very shortly which will obviously help so much.
So many of us truly understand what a crippling evil disease this can be, not least of all NRAS and your consultant, I know they will pull out all the stops for you.
I hope the family matters have been sorted out, thinking of you.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
As always you amaze me with your wonderful strength. Hope the steroids work and that they can find something to help.
Thoughts and prayers to you and your family.
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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Good news
I'm pleased to announce that I will be in hospital again  on Monday
I'm staying in there until Friday.
having shed load of steroids....
Also, NRAS are positively involved.
Jenni xx
how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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brilliant news - I know NRAS will work hard to achieve the best outcome. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Jenni, sorry to hear things are bad at the moment. Hope the steroids work for you.
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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GOOD GOOD GOOD !!!
The pulse treatments sounds good too, I know it means another stay in hospital but will be worth it.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, so sorry you are having to deal with so much pain. You are unbelievably strong, so glad you have a good consultant and that NRAS are closely involved. Also, I hope things are ok with Gemma, and that the police will take no action given her needs. Thinking of you, good luck with the big gun steroids. I know it means more hospital, but at least something is being done x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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Oh jenni it is so not fair hun. You really really deserve to have a break from all of this. This disease is evil it really is. I hope your stay in hospital for the steriods will bring you some relief. Lots of love. Belinda xx Treat others how you wish to be treated!!
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