Biologicals for me, whoop whoop lol

Having failed MTX and Ciclosporin now on Hydroxy, been on steroids for almost 3 yrs my Rheumy has decided Rituximab is the way to go. Looked online (generally and on here obv) and am reasonably positive about it. In our area you have to apply to the local PCT for approval (due to cost I believe) so may have to wait a while..who knows.

Hope it works, getting bored of my bodys ability to outsmart my consultants (haematology and rheumy) really want to knock the steroids on the head. Fed up of repeat script running at 2 pages (thank heavens for Pre-pay or I would be bankrupt lol) on the whole though feeling much chirpier than recent(ish) blogs, onwards and upwards. Been very busy of late jnr midget turned 4, mam turned 70 lots of party prep (as well as work/housework, etc) so am bone weary but in the main doing not so bad. Cross my fingers it continues (and yes I can still do that yay) till the next trauma/event/update...hope ur all doing okay, or if not that its only temporary..

Linda

18 Replies

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  • Hello Elrose that is good news hopefully you don't have to wait too long to get started.

  • Hi Elrose, hope you hear soon that you can start new meds & that the pain relief follows promptly. My children are grown ups so you & all people with youngsters to care for with RA have my respect. Enjoy all the birthday celebrations, I love getting together with friends&family even though there is usually payback!!

    Love Alison

  • I hear you with the payback. Worth it though.

  • Congrats & I hope you get approved soon, so that you can start the treatement asap!

    Good luck Sci x

  • Great news Linda, I too hope you get approval and the drugs you need soon. Hopefully it will be a turning point for you.

    Paula x

  • That is good news Linda, I too am being put on a new drug after failing so many!! It is called Tocilizumab, Have you ever heard of this one? Hope you get your new one soon. Lesley

  • Havent heard of that one, I swear they put all the ridiculous names in a hat for RA drugs, need tuition just to be able to pronounce them (never mind spelling lol). Looked that one up - seems a winner so good luck with that x

  • It's been great for me, you get well monitored too, so I hope it's good for you too

    Cathie

  • Hi I too have just had my first doses of rituximab, ( you have two doses two weeks apart) mine was 1st june and 15th june then the next is 6 months.

    I have had a steriod injection as it did not kick in straight away, some people it does! Met a man who has been on it for 24 months and he said it is brilliant and he hasn't looked back.

    Hope you hear soon when yours will be, mine was three weeks from deciding on it and having first dose. Let me know how you get on it will be nice to hear from someone in the same state as myself. Good luck my email address is gillclark1@btinternet.com if you need to chat.

    Love

    Gill

  • Nice to hear from someone who has had it so recently, suspect mine will take a bit longer to come through as my Rheumy advised PCT usually demands that you have tried one of the anti-TNF biologicals first (I cant due to Feltys and my already compromised immune system) will absolutely let you know how I get on..Linda x

  • Hi Elrose,

    That's great news. Heaven knows you need all the help you can get with two little ones and work to manage as well. This may be a fantastic turning point for you. Fingers crossed. xxxx

  • Am quite hopeful (though was hopeful before GCSF injection too and that didnt work) but without hope what have you got..? Will let you know how I get on.

  • Hi Linda, yes I had to try two newer drugs, then 2 anti TNF's before they allowed me to gone on it, just hope this works as not sure there is a next line of drugs to take :( but trying to stay hopeful. Good luck with yours and keep in touch. Gentle hugs x

    Gill

    X

  • Best of luck Elrose - it all sounds positive so I'm rooting for you. Tilda x

  • Hi Linda, I've just had my 2nd course of rituximab. First course was last year and 8 months later I've had the 2nd course. That's one good thing about the infusions, they are months appart.

    I haven't noticed anything different as far as my RA is concerned after the 1st course but my bloods show otherwise which is why I've gone for the 2nd course. I have heard of someone who only realised some of the effects of RA improved after the 2nd course so I have my fingers crossed that I will be 'a late performer' as well. On the other hand, a lady who was having an infusion of Rituximab at the same time as me saw improvement straight away after her first course and also realised when its usefulness was wearing off. So as we say "we are all so different".

    One good thing, the only side effect I have had so far was during the night of both of the 1st infusions and that was only that I couldn't sleep which eventually gave me a migraine. The 2nd infusions (both times) I didn't get the same reaction. I was very tired afterwards both times the next day, but hey, I can put up with that.

    The nurses were so good all the way through the infusions. BP and temperature were taken at 15 minute intervals at first and then as they increased the infusion speed, they checked about every half hour. The infusion does take a long time (5 to 6 hours) the first half of the infusion and then slightly less (4 to 5 hours) the second half. So be prepared for a long haul. Beauty of it is that you can get up and move about (i.e. go to the loo or just stretch your legs). It almost feels like a 'pamper day' especially since I pack my kindle and a bag of sweets. Some people are on their mobiles a lot of the time whatever helps pass the time. My very first infusion my daughter came in and sat with me for about an hour so we were able to have a good gossip.

    Coffee, tea or juice were brought to us in the morning and a sandwich, crisps, fruit or cheese and biscuits and a drink were provided at lunch time and another drink in the afternoon. No one had informed me of this the first time so I went laiden with my own. Hospital sandwiches may not be the best (depends on your hospital I suppose) and it's a case of whatever is on the trolley at the time at ours,

    Hope it all goes well for you. Keep us posted. (One other thing, I don't think you are allowed to drive yourself home. They have asked me all 4 visits "Who's collecting you/". It's not always easy to arrange so thought it best to warn you in advance.)

    Judi xxxxxxxxxx

  • Oh thanks for that last bit (rest of it too obv) I was quite prepared to take myself will sort something else out (will save me the parking anyways).

  • Thanks to all for encouragement, its appreciated. Will let you know how I get on. Hugs (gentle ofc) to everyone <<hug>>

  • Hi

    Just thought you might like to know more about the biologic drugs and the NICE processes. NRAS put together a very comprehensive guide and it can be downloaded from the NRAS website on this link nras.org.uk/help_for_you/pu... or you can call the office on 0845 458 3969 to request a copy. The booklet has information in it about tocilizumab or its brand name RoActemra. Tocilizumab has a different way of working as it targets another part of the inflammatory process. This is a small protein called the interleukin 6 and is one of the chemical messenger which switch on inflammation. Tocilizumab is one of the newer biologics and NICE passed initial guidance on this in August 2010, in 2012 it also recommended its use as a first biologic option ie as an alterantive choice to an anti-TNF. If you have any questions then please give the helpline a call on 0800 298 7650.

    Best wishes

    Lorraine

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