Sorry to hear you have been up to your tricks again Lyn! Hope your injuries improve quickly. Wish it was better news with the Rituximab too. I still have to see any improvements in my blood levels too, though I'm a month behind you.

Just wanted to say thinking of you - I was wondering what you'd been up to and how you were doing. No more auditions for Billy Smart please!!

Ailsa xx

Hi Lyn

No, I m sure the fall didn t help but we all do these things and think afterwards how stupid, the other week I managed to throw a cup of hot chocolate over the bedside cabinet and duvet, I was stupidly carrying too much, tripped up and went flying

I so hope all goes well with your next appointment in about weeks time, will cross everything for you !

Love Julia xx

I am being a 'slo-mo' yet again but am only able to type using my left hand and that's basically with just one finger. At the moment I'm having significant problems with the ulnar deviation of my right hand. The MCP joints (knuckles) are all subluxating (slipping out of joint) due to many years of hand damage. As a result the tendons between my wrist and hand have become shortened so any use of my hand causes an overstretch of the tendons, very painful. I'm awaiting a special support that will hopefully help to hold the fingers in the correct position and allow the inflamed tendons to settle down. At some point it will mean yet more surgery ... don't mind that so much, it's the long recovery period thats the problem!

I went for my 3 month Ritux check up last week. I knew things were not improving but didn't realise they were actually getting worse! My DAS is now 6.0 from about 5.2. Like you Rose, I was told to be patient and wait a while longer, as in 3 months longer! So, if nothing happens that will be a fuirther 6 months of uncontrolled disease and I don't know what comes next. I suspect it will be Tocilizumab.

Rose, I used to feel that I would never get better and feel like 'me' any more but it will happen. I have had some good long periods of being able to do things and really miss that feeling of wellness when it all goes wrong again. Try to stay positive, surely good news must be just around the corner for you.

Enough typing for one 'late' night!

Lyn x

Hi Lyn

Its good to hear from you, but so sorry that you still have all the problems with your hands and the lack of progress with Rtx. such a waiting game all the time. Just like you rightly say with time and the right medication you do return a sense of well being and get your life back. Just seems so hard to believe it will ever happen when the RA is not under control.

Sending my love and thinking of you.

Julia xx

Hi Lyn,
Sorry to hear about the problems you are having with your hand. There's always something. Hope the supportthingymebob arrives soon and helps.
Also sorry to read that you still have had no benefit from the RTX. It is so frustrating waiting for new drugs to kick in, not to mention the worry of what extra damage is being done in the meantime. It must be difficult to keep positive after so long waiting and remain optimistic that this drug will work. ( I am in a similar situation myself at the moment) but try we must as you so rightly advocate. I can really empathise with your longing to feel 'well' again, everything is relative and for me, it's sometimes only when the drugs start to lose their efficacy that I realise just how much they were doing!
Hope for you it's just that the RTX is taking its time and it proves to be beneficial very soon. Hang in there. A good nights sleep might help a bit, if only!
Hope Abby has settled in well and is liking her new job.
Take care,
Thinking of you
Diane x

Oh Lynn


Poor poor you, gosh I do feel for you. The problem with your wrists and fingers sound absolutely
awful. The pain must be very bad, as I think us RA sufferers do put up with a lot of pain. I hope
the splint arrives soon and will help the pain and help you sleep. Do you take amitryptline
as I think they help the muscle spasm. I also get these but they appear to be worse since the
RTX . Like sharp pains almost anywhere and pins and needles numbness feel. It is horris I
know and wakes me up. Horrid when you cannot sleep in the night. Do you manage to rest
and sleep in the day ?


I still have not had the letter from my RA nurse regarding my visit on 3rd Feb. so not told what
my DAS score was, also no reply from my GP for a steriod injection (so her letter has not got to him)
I have rung to speak with my GP tomorrow to see about getting a depo to help me.

Take care Lyn, chin up

Rose x

hi Lyn,

so sorry to hear you're in pain with your right hand, sounds so complicated .. this RA sure has a lot to answer for,

really hope the Rituximab does work wonders for you soon, these drugs sre are a waiting game.

try and keep your spirits up, easier said than done i know.

take care,

Suzanne x

Hi Lyn

Hope you have been managing some better sleep, like Rose suggests the amitriptyline has been a great help to me at night too and think I will continue to take whatever is going on with the other meds. I seem to do my own thing a a bit these days and its not like I am introducing any new ones to the mix ( so to speak )
It certainly can get quite involved( especially with my brain these days ) with the reaction of one drug to another and your point about the steroids/anti inflam, masking the improvement.

Love and best wishes Julia xx

Not again, I think my computer is on the blink - keep sending two messages !

Hi Guys

An update!

My 16 weeks is now up and I'm told if the Rituximab is going to work it will have done so by now Well it hasn't ... it hasn't done a bloomin' thing except make me put on even more weight due to the extra steroids to keep things just about in check! What a load of rubbish that was, not to mention the waste of time, effort and expense. Why, for goodness sake, are 'they' bringing out all these new RA meds yet don't seem to have the basic knowledge to decide which ones are best suited to which patients? How many times have I heard "well, if this one doesn't work we'll try another"? At what cost to patient health, not to mention the NHS budget? So where to now? Actually I don't know!

I'm going to do some more research and ponder . Ponder who I should ask my questions of in the hope of a half decent answer. I'll also ponder on why having depleted my mature B cells with the CD20 protein attached I still have the inflammation that's supposed to have disappeared with the B cells! Then having pondered these things I'm going to wonder why if Infliximab and Enbrel, both anti-tnf drugs, worked for 9 years surely that suggests that the inflammation is caused by the tumour necrosis factor otherwise they wouldn't have worked! That being the case why can't I have another one? Perhaps 'they' might like to experiment with an IL-6 receptor such as Tocilizumab. But who's to say IL-6 is the cause of my inflammation rather than the woman sat next to me in the hospital waiting room?

It's a joke. It has to be! Imagine having a pain in the middle of your body somewhere and the only way to relieve this pain is for the doctor to remove it surgically. He knows surgery will work, of course, he's tried it before, but isn't too sure how to decide what's causing the pain. So what does he do? He takes out one organ at a time until hey presto ... he's found the culprit! Fixed, cured ... except it's taken so ruddy long in the elimination process there ain't much left of the patient Okay, guess I'm just being cynical now, but you get my drift? 24 years I've played this stupid 'try it and see' game and it's become quite boring. In fact I'd be well and truly fed up with the whole thing if it wasn't for the new joint damage that keeps popping up every now and again just to keep things that little bit more interesting ... but that's another story for another day!

I'm not downhearted, what's the point? Achieves absolutely nothing except makes you depressed! In fact I'm sat here at 1 a.m. with a big grin on my face, sore hands, sore neck, sore knees and feet thinking, what the hell? If it wasn't RA it would be some other ruddy disease. Welcome to life in the 21st century!

Lyn xx

P.S. Well it makes me giggle and I promise I've not touched Eleanor's 'special' cake, been near Doreen's tea trolley or supped any of Sheila's neatly laid out thimbles ... ... yet As for the pole, hey watch yerself Jean ... here I come