|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Rose, I hope you start to feel better soon - we have such high hopes every time they try us on a different drug, and you just want it to work quickly, and preferably without any side effects. I feel for you, feeling so poorly afterwards. I think you were very brave to inject into your thigh - I haven`t tried that for about 3 years now!! Take care, Kathleen x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
Sorry to hear you are still struggling so much Rose. I must be such a disappointment that the magic wand didn't work. Thinking of you and hoping you've had some advice since your last post.
Julie x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Still feeling rough unfortunately so it looks like the humira may not work for me.
My Doctor has signed me off 2 weeks - so resting to hopefully make this ruddy
disease go away.
Going for a meal tomorrow with our friends to a country pub so that should be good.
Have ironing to do tomorrow so after that I probably wont do much else.
Nice week end to you all
Rose
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Rose Hope you had a lovely meal with your friends and could take your mind off all you have been going through. I think you have given Humira a good length of time now and should ask your consultant to consider another biologic you can t go on suffering like this and you waited to go on it for so long as well. I failed on infliximab and started on Cimzia yesterday, and so far ( fingers crossed ) have had no reaction at all - whether it works or not is another matter of course. The nurse told me not to use the special cleansing wipe before injecting as my skin was perfectly clean from showering in the morning ( I will only do it in my tummy ) as she said it only causes stinging and it not necessary, and said ideal for cleaning your glasses  Hope you have a nice restful Sunday with lots of sunshine. Julia x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
|
Hi Rose
So sorry that it looks like the Humira is not working, I know how you feel as like Julia Ive failed on infliximab after having such high hopes! Im glad you've got a couple of weeks to rest and hope you had a nice meal with your friends. Take care x
Good luck with the Cimzia, Julia.. Really interested to see how you get on! x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Ceri
Thanks, I will certainly keep you posted on how things go with this one. It is meant to fairly to be fairly fast acting and can show improvements as early as two weeks after starting the drug. that will be quite interesting. I don t actually know why my consultant chose this one, however I would mention that the drug company who produced the drug, UCB have agreed with NICE to pay the first twelve weeks of treatment, and if positive results are showing then the NHS take over paying.
I hope you get on well with your appointment with the consultant in August.
Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi Rose. I hope you weren't in too much pain when you went for your meal out and managed to have a nice time. I am really sorry that things are not working for you yet. I hope they get you on to the right treatment soon and you will be feeling much better.
Sheila x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
|
Hi Rose So sorry that you are still suffering and the the Humira does not seem to be working...........................you waited so long to start it too  Heres hoping they will soon sort you out an alternative with more success. Hope you enjoyed your meal out. Best Wishes Sue
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Sue and Sheila,
Thank you had a lovely meal out on Saturday evening. Weather was warm so managed to also
sit outside.
Julia,
Thank you for your wishes. I do so hope Cimzia works for you. Interested to see how you do.
Ceri,
Thank you also for your wishes good luck on your appointment this month
I was invited out bbq on Sunday which Hubby and I went to, but yesterday I was fit for nothing. Loads of
sleep (slept 12 half hours) , and pain killers. Don't feel so bad today as did nothing yesterday -BUT tomorrow
is injection day again. Ooo no. fingers crossed though. I do not see my RA nurse until mid Sept, although I
have spoken to her on phone.
Rose x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Thinking of you. Hope all goes well.
Shjeila x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
|
It's infuriating when the drugs don't work. I've failed on four, now about to probably fail on Humira too. This thread has been very helpful, I know exactly what to expect and what to look out for.  xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Rose
I am so sorry you are having such a rough time with the Humira. Unfortunately the same thing happened with me and I had to stop. I think you will get to the point when you know you have had enough. There are other options so keep the faith.
I will be thinking about you tomorrow - good luck.
Jackie
xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Rose
Thanks for your best wishes with the Cimzia, I certainly will keep you all posted on this one, especially as it is relatively new and not a great deal has been discussed about it.
I so hope you have a better time with the injection, like Jackie says you ll know if you ve had enough, and if so perhaps try and get an urgent appt, with your consultant so that you can make some headway.
Thinking of you, Julia x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
|
Good luck with the injection Rose will be thinking of you x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Well the injection went as per the previous ones other than this time no itching - I suppost that something.
I have tried to ring my RA nurse and she is away until 17th August. Saw my Doc again yesterday and suggested
I send a letter first classs to my Specialist. So sat and composed and sent my letter explaining all the side
effects I have been having and that I am no better. Asking for urgent response as I really do not want to take
it again next Wednesday.
So watch this space to see if I have a telephone call ! ! !
My Doctor has signed me off for another 10 days from yesterday. However today I have received an
e mail to say that HR are coming to visit me at home next Tuesday, I do hope this will be ok and not going to
get rid of me. . . .
Feel very nervy and cheesed off.
Rose x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
|
Hi Rose - just catching up with news. So sorry to see that the Humira isn't doing the trick and you are feeling rough. You waited so long to get started too. Hope you can rest a little and not worry about work - it is unnerving though, waiting for meetings etc. I wonder if 'they' ever stop to think that we do want to be fit and well and at work?
Take care Rose - hope you get some answers soon XX Ailsa
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Thanks Ailsa,
Missed you you haven't been on much recently. Let us know under the approp heading how you are.
Thanks for your wishes
Rose
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Rose Sorry to hear things still not going well for you. Will be thinking about you on Tuesday and keeping fingers crossed it won't be bad news. I still hope the Humira will do the trick and things settle down for you. If it's not to be there are others to try so don't get too despondent. Try to keep the spirits up although I understand just how hard that is at times. Keep us posted Rose  Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hi Rose
I don't know whether this will help or not, but my daughter has had a fair amount of time off school over the past year due to depression and anxiety, and was very worried when HR paid her a visit. However, they were very kind and she is now back on her usual hours. I know it depends on the people concered, but I am hoping your HR people are as undersanding as Lucy's were.
Take care
Love Jeanxxx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Thank you Lynn and Jean.
They were very good to be last year. I was off 7 half months and was full pay for 13 weeks and then 75% for 13 weeks but I
was the Branch Manager then. Not being able to cope of the role of BM due to stress, working w ends and evenings so
had to step back. So now am an Insurance advisor and only doing 12 hours over 2 days. . . will wait and see.
|
|
|
|
|
|
|
