NRAS Logo
Logged in as: pedro-pmc Search | Moderate | Active Topics | My Profile | Members | Logout

2 Pages <12
New Topic Post Reply
No drug funding Options
Previous Topic · Next Topic
Julia17
#21 Posted : Sunday, October 30, 2011 11:00:56 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hope all goes well for you tomorrow Jenni,

Will be thinking of you, Julia xx
Back to top
 Report Abusive | Report SPAM
jeanb
#22 Posted : Monday, October 31, 2011 9:07:46 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,006
Location: Timperley
Loads of Hugs and prayers for today, lovely. xxxxxx
Back to top
 Report Abusive | Report SPAM
bevie
#23 Posted : Monday, October 31, 2011 1:49:44 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 346
I am a bit late with this, but good luck at your appointment.

Bevxx
Back to top
 Report Abusive | Report SPAM
Ailsa-H
#24 Posted : Monday, October 31, 2011 7:14:00 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 3/4/2010
Posts: 576
I was thinking about you today Jenni and hoping you got some pain relief for starters and some ideas for next steps too. Hope the day wasn't too stressful (for you OR your consultant!) Enjoy your downstairs bed as much as you need to XX Ailsa
Back to top
 Report Abusive | Report SPAM
Ailsa-H
#25 Posted : Monday, October 31, 2011 7:15:36 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 3/4/2010
Posts: 576
I was thinking about you today Jenni and hoping you got some pain relief for starters and some ideas for next steps too. Hope the day wasn't too stressful (for you OR your consultant!) Enjoy your downstairs bed as much as you need to XX Ailsa
Back to top
 Report Abusive | Report SPAM
jenni_b
#26 Posted : Wednesday, November 09, 2011 6:35:37 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
Welcome again to the ward where I'm having some meds this time its methalpred

I can't have the jak one because the drug company are not going to supply it as it's not licensed in the eu yet
In the meantime I'm here having 3 bags of methalpred over 5 days

Beyond that they are considering the cyclophosphamide

And then the (yikes) bone marrow transplant

Nras are going to try and change the jak drug companies minds.... Xx
how to be a velvet bulldoser
Back to top
 Report Abusive | Report SPAM
Naomi1
#27 Posted : Wednesday, November 09, 2011 7:31:57 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 9/3/2011
Posts: 717
Location: Torbay
I'm so glad NRAS are backing you up on this. I hope the Methalpred works for you and doesn't have nasty side effects. Are you having to stay in? Keep us posted on it all. Thinking of you X
Back to top
 Report Abusive | Report SPAM
Ailsa-H
#28 Posted : Wednesday, November 09, 2011 7:45:29 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 3/4/2010
Posts: 576
Good luck Jenny - hope you are tolerating all the meds ok and maybe starting to feel the benefit soon too. Glad you had a good chat with Gemma. Hope she is more settled too. Take care and fingers crossed that NRAS can change minds and rules for you and it doen't come to bm transplant xx Ailsa
Back to top
 Report Abusive | Report SPAM
jenni_b
#29 Posted : Thursday, November 10, 2011 1:31:08 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
Hi

Yes I've been in hospital since Monday- all being well home in the afternoon friday

So flushed after all that methylprednisolone... Thankfully it's rest day today

how to be a velvet bulldoser
Back to top
 Report Abusive | Report SPAM
Julia17
#30 Posted : Thursday, November 10, 2011 6:47:54 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi Jenni

Hope all continues to go well, and home tomorrow afternoon. Keeping everything crossed that our NRAS are able to get the JAK drug for you, if anyone can - they can !

Wishing you a good weekend, when it arrives Smile

Julia xx
Back to top
 Report Abusive | Report SPAM
LynW
#31 Posted : Thursday, November 10, 2011 7:31:56 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Jenni

I was reading some stuff on the JAKs and SYKs just the other day and was left with the impression that it will be the back end of 2012 before JAKs are actually being used in the States for RA and sometime after that trials will begin in Europe.

Have you got some later information on this? Would be really interested to hear (or just plain nosey!) Smile

I had methylpred last week before the Ritux ... had forgotten how effective it actually is! Hope you are feeling some benefit from it.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Back to top
 Report Abusive | Report SPAM
Users browsing this topic
2 Pages <12
New Topic Post Reply
Forum Jump  
You can post new topics in this forum.
You can reply to topics in this forum.
You cannot delete your posts in this forum.
You can edit your posts in this forum.
You cannot create polls in this forum.
You cannot vote in polls in this forum.

SoClean Theme By Jaben Cargman (Tiny Gecko)
Powered by YAF 1.9.3 | YAF © 2003-2009, Yet Another Forum.NET
This page was generated in 0.150 seconds.