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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Will ring about half six xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Lynn
Just wondering how you getting on today with the 2nd infusion thinking about you.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Lyn
Hope all went well today at the hospital, thinking of you.
Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hope you are being chauffeured home now Lyn and well enough to get ready and go out again! XX Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Lyn - wondering how you are doing? Hope you are beginning to feel some benefit and not had any ill effects this last week. Let us know how you got on when you get chance xx Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Guys Sorry I am being such a slo-mo  Thank you for all your thoughts  The second infusion on the 17th went well. I was at the hospital ready to start just before 8.30am. Same procedure as last time except this time the Rituximab went in a lot faster! No problems and I was on my way home before 2pm. However ... That night we had our NRAS group 1st birthday meeting. As I couldn't drive my daughter took me back to the hospital with all the 'gear'. There was quite a lot of setting up to do; we had a quiz and a buffet. I felt okay, plenty of energy, but my head was elsewhere and just didn't feel as though it belonged to me! Got through the night and was glad to get home again. I wasn't tired at all, an effect I don't seem to have experienced. Just felt spaced out, but it seems this was more to do with the methyl prednisolone infusion. I am already on 12.5mg of prednisolone daily and the additional amount seemed to send me someplace else. Took the weekend to get over that little intrusion into everyday life and then on Tuesday I started with a urinary tract infection. So, I'm now on a large dose of antibios for a week. Family have all had coughs and colds this week and now I've got that too ... great, B-cells wiped and there's bugs and germs everywhere! Very sore throat, thick head and to top it off my voice doesn't want to play anymore! This Rituximab had better do the job and hopefully it won't take 16 ruddy weeks! Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Aww Lyn - infections are not what you need at the mo. Sorry you are feeling grim, but well done for the marathon you got through on your 2nd infusion day  On the driving issue - is it not recommended to drive and is that just for the day of the infusion? I've not had any info from the hospital about the proceedure except to arrive at 11.30. Hope you are feeling better soon Lyn xx Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Lynn
Good to hear from you. Sorry you are on antibiotics.
Funny though, I am 2 weeks ahead of you, and I have been on antibiotics - but not worked, for a dreadful cough (never had
a cough as bad ) I have had to sit propped up at night, and the same as you no voice (my Mike is secretly pleased I think)
It makes me wonder. Need to sit and wait for it to work now. 2nd infusion was on 2nd November and as yet no
difference to pain , fatigue etc. I had a blood test on Friday so will need to see what they show.
You take care.
Rose x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi guys Well, I wish I could report some miracle but sadly I can't! Two infections under my belt, feel very out of sorts and even more so after my routine rheumatology appointment last Monday. Consultant took one look at my blood test results and wasn't happy; the expected drop in the lymphocytes hasn't happened, it has actually gone up from recent months. She feels that alongside other test results this could well indicate that the Rituximab has not worked and is already considering alternatives (not many left for me unfortunately). Due to a number of recently developed neurological problems I have had to cut out much of the prednisolone, the only thing that is keeping me ticking right now, and instead increase the Naproxen to help with the inflammation. Chuck in a dish full of methotrexate and Bingo ... talk about a juggling act! I had to have my left knee aspirated and injection yet again as I could barely walk, lost count this year, and referral to orthopaedics for further hand surgery. After 21 months of uncontrolled disease a couple of weeks break would be wonderful. Positivity is somewhat flagging right now ... hibernation is becoming more appealing by the day! Lyn xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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I really feel for you Lyn but come on - you're a fighter. Don't let your guard down. I know things will seem even worse because it is Christmas and we all want things to be perfect so it is harder for you right now. Keep that positivity going, you can do it. Lots of love and hugs for Christmas and I will see you in January. Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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So sorry to hear this Lynn - not the news you needed at all Sending remote and non-contagious hugs and wishes for a much better new year, new knees, new hands .... insert any other body parts you would like to be overhauled ... Thinking of you xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Sorry to hear this, Lyn. I do hope you got through Christmas OK, and feel a bit better now. Hibernation might be good - but then we`d all miss you if we had to wait until Spring! Take care, Kathleen x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Lyn, I ve only just picked up on your post, and so very sorry to hear all this, such a terrible disappointment to say the least. I know you will remain positive, you always manage to do, but it just gets so hard when the disease is continually wearing you down, RA can be so wicked you have to be a fighter and I think we all know that here. I so hope the new year brings good news , and please don t hibernate I would really miss you With love Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Oh Lyn-you SO deserve some better news in the New Year. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Sorry things are not going well at all for you Lyn.
Hope you managed to enjoy Christmas and hopefully things will pick up for you in the New Year.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi Lyn,
just caught up with this. I'm so very sorry that you haven't had the desired benefit from RTX and had the nasty side effects including infections to boot.
It's so disheartening when a drug you've put your hopes on doesn't work and that familiar feeling of despair that options are running out returns.
Also sorry to hear that further surgery is on the cards, it seems as if we go from one operation to another and I know how mentally and physically exhausting that can be.
Uncontrolled RA is no fun at all and you be must be totally worn out after so long without effective meds....no wonder you feel your positivity is flagging, but if I know you, it wont be long before it returns. You've faced worse than this and got through it and you'll get through this time too, I just hope you don't have to wait too much longer for effective treatment.
I hope you managed to enjoy Christmas with your family and I am wishing you a much better 2012. Hang in there and hopefully the new year will bring you a deserved change of fortune.
You are in my thoughts and prayers.
Much love
Diane x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Hello Lyn, so sorry that RTX is not going so well. Dashed infections don't help. Thinking about you.
x
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Lynn
Just caught up with you and your post. Sorry that your appointment re your bloods do not look good for the continuous of
the RTX. I am sure you feel fed up Lynn especially as you have tried and tested so many drugs. Can they reverse the
drug i.e. I mean if the contents of the RTX is affecting you badly can it be reversed ?
I was told it can take up 16 weeks for the RTX to work. I am 7 weeks from my second infusion and apart from 1 hand
and fingers being slightly less painful , I am still waiting for the rest of my body to take effect.
Thinking of you Lynn.
Rose x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Another month on and still no improvement. Due for my follow up appointment and full assessment in about 10 days. What next I wonder?! Now have some serious issues with ulnar deviation and subluxating fingers. Undoubtedly made worse by throwing myself on the floor, whilst carrying two plates of spag bol, and putting my hands out to save myself!!! Aarghhh .... do I never learn?! No more 'waitressing' for me  and I was just trying to be helpful! Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Oh ouch Lyn-not a good idea. Take care. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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