Hello Lyn

I too was wondering where everyone had gone!

I am more of a reader than a poster and have been burying my head in the sand and hiding from the doctors and hospital for a while.
My last treatment of Abatacept seems to have bitten the dust. At best I don't think it was doing anything at all, and at worst was making things worse. I started last June, following three rounds of Rutxumab which also did nothing to speak of except giving me sort of spinny sensations and making me feel not quite right.

I hope your Rituximab may do something for you and wonder what next. High doses of steroids are the only treatment that works consistantly for me and have now been taking them for over 22 years having started temporarily whilst Methotrexate took effect!

Liz T

Hi

Sorry to hear you're not so good at the moment Kathleen, hope things improve for you soon. It's worryingly quiet on here and seems very strange, keep thinking someone's forgotten to tell me something!

Liz, I have now reached week 15 of my first cycle of Rituximab, one week to go before it's declared ineffective. My consultant didn't mention further cycles and I assumed she wouldn't want to give it another try, not that I'm keen to wait much longer for a result! Taking steroids has caused so much weight gain, I've now got a pile of fat to lose too . She pointed out that there are other options, presumably either Tocilizumab (IL-6 inhibitor) or Abatacept (T-cell therapy). Goodness knows why they can't do a blood test to ascertain which of the cells are causing the inflammation, then they would know which treatment to use! Simples So where do you go next? Tocilizumab?

Lyn x

Hi Lyn , Liz and Kathleen, sorry I've become lazy about posting, still read lots but I do need to do more about posting. Sorry to hear that the Ritiximab hasn't worked. If its any consolation my first two rounds didn't work, third was a little better and did get me up on my feet. Only had half of the fourth round so can't comment on that really.

I was going to post in drugs about something else so might as well put it here as it might be of interest to someone. Following surgery in October (nothing to do with RA) I was put on a drug in December for something else, oh I might as well tell the story otherwise it might not make sense.

I had an unexpected op for a GIST tumour in October and yes the good news is that they got it all along with a bit of my bowel and a hysterectomy. However there is a high chance that it may grow back, so in December I started on a drug called Imatinib. Its a kinase inhibitor which means it stops certain cells growing, so hopefully the tumour won't grow again. However its been fantastic for the RA and although it only been 10 weeks that I've been on the drug I've noticed a huge difference, my knees are still a bit of a problem and I had to have one drained again two weeks ago, but my shoulders are so much more mobile that I can now dress, dry, myself take things off over my head and dry my hair with a brush and hairdryer. Balls of the feet no longer hurt when walking and I don't wake up at night now when I turn over. In addition I have hardley any morning stiffness. Sorry to boast about these things and yes there is still the chance that the remission is due to the op rather than the drug but I don't think so. I saw the rhuemy a week ago and told him and he thought some testing of this for RA had been done some time ago. From what I can see on the net, trials did start for this but many folk couldn't tolerate it. I have to admit it does give me diarrhoea, puffy eyes and ankles and I'm putting on weight at a rate of knots but to be able to move without pain is just so good and I really do feel very well.

As lyn said it would be good if we could all be tested and given the drug that suites us. The consultant also said that there's many drugs currently under testing for use with RA that are anti cancer drugs and for every 50 suggested maybe one will get through testing and work. He also said that years ago they experimented with deliberatly giving people with RA perotinitus and if they didn't kill you doing this then because the body threw everything at it to fight it, then it had nothing left to bother the joints and the RA went into remission. Don't think I would be opting for this one!

I was wondering whether it would be worth ringing NRAS ? Just to let them know about Imatinib, they may know of others where its been useful not just for what it was prescribed but also for RA.

I really hope that those of you for whom rituximab hasn't been the wonder drug that you'll either see some results from the next round or you'll be able to change to something else.

Best wishes to all

Sheila R

Hi, I havent been on for a week or so as been feeling soooo tired by the evening just been going to bed

Sheila, wow!! what problems!! good luck, is all I can say

Lyn, weight problems and pred, what can we say??? apart from b****y stuff!! cant live with it, cant live without it!!

We are all still here it seems, so thats good

Hello Lynn,

Agree with you that the forum has been so quiet of late , and people who did post regularly seem
to have disappeared.

I have been on , as you know, wondering how things are with you this week. My steriod has given me
a lot more strength as Iam not anywhere near as stiff.

Hello to everyone else and GET POSTING. We miss you



Rose x

Hi Lyn,
I'm Fiona and used to post quite a lot.
I seemed to just get out of the habit of
logging on to the site!
This evening I thought that it had really been ages
so here I am again!
Yes, there do seem to be less people posting these days, I
really have no explanation for why this should be.
I know that personally, sometimes I just want to escape from
all things R.A related and yet I realize that when advice and support
are needed there is nowhere else like this forum!
Best wishes,
Fiona

Oh crumbs, now everyone's replying and I'm feeling like I'm wielding a big stick demanding your explanations for absences

Anyway my worst fears are allayed and you haven't all disappeared after all. Phew ... relief!

Hi Lorna, it must be pretty hectic in your house with the wedding arrangements. Is it next month?

Wow Sheila, life has been giving you a difficult time of late. So pleased for you that the op was a success, it must have been a very worrying time. I have heard of the drug Imatinib, it's a tyrosine kinase inhibitor. There is a lot of research and testing going on at the moment into kinase inhibitors (JAKs and SYKs) and their efficacy in RA so hopefully something good will come of it all. It certainly sounds as though the drug is working well for you and sometimes the grotty side effects are worth putting up with for a more 'normal' life! Hope the grot settles a little and the benefits remain with you.

Dorothy, this is no time to be sitting back resting! We have the jubilee celebrations to prepare for and of course the Olympic games. What with snakes and donkeys on the loose, cannonballs flying about right, left and centre, a newly bedecked tea trolley ready for the off and a mad woman with a chain saw ... eh up, who said that?!!

Barbara, so pleased you're still here, sounds like fatigue is hitting a lot of people. Luckily, or not, my steroids provide me with plenty of energy, especially when I don't need it like in the middle of the night. Unfortunately energy isn't any good when you can't put it to good use ... in fact it's darned frustrating!

Hope the meds kick in again soon Julie. It's no joke being without them but needs must at times. Hope you start to feel much better soon

Hey Rose, good news about the steroid, let's hope it provides you with a good break from some of the symptoms. I'm now at week 15 and still no change; sighs in disbelief It's a shame so many of the regulars seem to have disappeared from the forum.

I remember reading about your progress Suzanne, such good news after a creaky start. Here's hoping it continues for you I'm sure it will.

Fiona, I know just what you mean about wanting to escape R.A. related things for a time. It can be easy to get sucked in and let it become the be all and end all of everyday life. i always say I'm happy to let the RA travel alongside on life's journey but it stays in freight and not in first class with me. Really believe you have to stay in charge to stay on top. It does work ... well, for me anyway! Good to see you posting again, hope you're keeping well

Hi Doreen, that's a rather nice little man you have there (well, when I say man I use the term rather loosely!), looks like one of those chaps from the airport, forget what they're called. One of those guys who waves in the planes. Do you know what I mean? Oh for a holiday!

Any road up, now I've marked my register and everything still seems to be shipshape, think I'll go and grab an ice-lolly and watch telly for a while!

Thanks for all your posts; it's cheered me up no end

Lyn xx

I'm still lurking around!

Hi Jean

Yes, I know you're lurking still but I was wondering what had happened to all the others. We seem to have lost a lot of regulars over the last 12 months or so. Wonder why? Time out perhaps?! The forum used to be lively and almost bordering on exciting at times

Lyn x

Hi all,
I'm still here too, though I've always been more of a reader/lurker than a poster I suppose.
Am I late for registration Lyn?
Diane x