hi Rose,

sorry to hear you are feeling poorly,

i truly hope the Rituxamib does it's magic for you .. but i know it's a waiting game as with all RA drugs.

glad you had a nice break away and that you have some time off to rest.

take care,

Suzanne x

Hello

Update. My RA nurse has rung me back today and has decided NOT to put me on a course of steriods. This is because
before the Rituximab infusion I was given steriods . So I think she is telling me that I should not be stiff or in pain. . . . . ..
I just don't understand, why am I in more pain, or as much pain as I was 1 month ago.. I want to feel well. I have had
12 hours of potent drug pumped into me - so why am I know different. Fatigue is the same as well. Why then is it
I am finding no difference at all. Still getting head pains as well. As said earlier in the wk my GP signed me off for 1 month. I feel a bit of a fraud
as I have had steriod so WHY. . . . I have to ring mr RA nurse end of next week after the antibiotics and go and
have a blood test to check things.

Sorry to moan been very weepy today. HR are coming to visit me next Wednesday as well - oh no more things to worry about

Love Rose (Misery)

However tomorrow is another day, sorry folks. x

oh Rose, really wish you were feeling better. to put ourselves thru new drug treatments. all the anxiety that comes with that, you just wish for some relief. Don't be sorry you are amongst friends you are allowed to rant and moan. thinking of you.
sue v xx

hi Rose,

i am so sorry to hear how things are for you, no wonder you are weepy.

this disease seems so hard to control unless you find the right meds on the first go,

i hope you have some support around you but you know we are all here for you.

try not to worry about HR visiting difficult i know, will be thinking of you,

take care,

Suzanne x

Hi Rose - so sorry to see that you are still in pain. I'm not surprised you are feeling low and tearful after all the stress, pain and waiting. Maybe you could ring NRAS and speak to the nurse to see if there is something they could suggest?

I think you need to give yourself permission to feel rough without keeping an eye on work. Hard when you have HR coming round but absolutely nobody would be going into work feeling as you do now. It may take some weeks for the Ritx to work and in the meantime, keep posting and don't worry about being a misery. We are all miseries sometimes!!

Wish we were all neighbours and could pop round and help out! Take care - thinking of you, Ailsa xx

Rose

I am so sorry that you are struggling. I have heard that it is quite common to flare after Rituximab and you can go down for a while. I had half a dose and then it had to be stopped and had loads of steroids pumped into me beforehand. About three weeks after this my joints were definitely better. Unfortunately it only lasted for about another month.

Keep the faith Rose and hope you start to feel a little better soon.

Jackie
xx

Oh Rose really really sorry you feeling so down. Like everyone says it is not surprising with all you have been through.

Lots of love and gentle hugs for you and I really hope the ritux starts to show signs of working.

Takecare
Love
Belinda
xxxx

Hello All,

Just an update on me . . . .

Well after 8 weeks off work I started back this Tuesday and Thursday doing my 6 hr days. May not sound alot but gosh it has
taken it out of me. I pushed myself to go back as the miracle was not happenning and thought it better that I try and push
myself a little and get back into a routine. Being in the FSA industry I had to go in on Thursday and take 10 / 12 tests
having to score 100% on each one, before I can even deal with the public again - ugh the stress was enormous, but stayed
till 6.35 to finish them and now completed - gosh what a relief. When I go in or Tuesday I then have to be mystery shopped
so that I can then sell again. All strange (especially as I was the Manager there for over 25 yrs) - oh well time moves on
and I now know that I cannot manage the job, stress of it all.

Well sorry to say apart from my left hand, which marginally appears less stiff, I am still waiting for RTX to work. I am still
tired, very painful feet, hand elbows neck etc.

I did speak with RA nurse 2 week ago but she said that I need to be more patient - so I am trying to.

Been out to lunch to Brother in law today which was nice, watched Strictly from last night and now off to bed as
a busy weekend.

Take care all.



x

Hi Rose

Sorry to hear that things haven't quite been going to plan. It's all very well people telling you to be more patient ... they don't have to live with the ups and downs of this cruddy disease day in day out. You have my complete sympathy and understanding.

Hope things improve soon and you feel some benefit from the Rituximab

Lyn x

Hello Ailsa,

My cough is definately getting better , but still bringing up nastiness.

I was not allowed to start any steriod,due to the large amount of steriod given at the time
of infusion. So on anti inflam's and pain killers paracetamol and tramadol and amitryptline.
I of my hands/fingers appear not so stiff and pain, but waiting for the rest of my body
to follow. 7 weeks since my second infusion so if going to work big time I think it should
be very soon - hopefully

How you now after your infection. I have been on antibiotics twice as well in November

Rose x