Message from T two!

Message from T two!

Hi she's still in hospital and getting endoscopy tomorrow although as you know the surgeons are not being very accommodating as to their patients wishes re sedation.

So wait and see now and in her words no doubt it will be negative and I will be home!!!

She says thanks for all the support and I add that thanks, HU ( as the new NRAS magazine says) is such a great support I think xxx

Update you all when I know tomorrow xx night xx A

18 Replies

  • Thank you

  • Thanks for the update Alannah. Twitchy, I have posted on your other post just now but posting here too to say I'm thinking of you very very much for your endoscopy and have everything crossed that you get the sedation.

    Loads love Tillyxxx

  • Thanks for all your hard work Allanah, all the best Twitchytoes, although no doubt you are having your treatment now! Look forward to hearing the results and hoping they get you sorted pretty sharpish after all the mucking about you've received. Take care both xxx

  • Big hugs TT. Thanks Allanah x

  • Aw thanks guys too! Bit nervous as start Rituximab tomortow and radiotherapy day after but I'm sure it will be fine !!! The drugs are only toxic to my RA !!!

  • Hello Allanah really good luck for Ritux and radiotherapy. I have been on Ritux for a few years now and it really helps my RA. Hope it does the same for you. Will b thinking of you for both. Love Tillyxxx

  • Were you worried before your first infusion Tilly? How long did it take, how long before you noticed your improvement? Were u on steroids when you had your first infusion and did you still take them or not??? ( I know they r giving me steroids as part of the premed) thanks in advance if you can tell me any info ?

  • Oops sorry turned this into me me me not T lol !!

  • Hello Allanah, I'm sure Twitchy wont mind our little 'aside' lol. I was very nervous before my first infusion of Ritux and, because I don't have them often enough to get used to it I still get very nervous now after four cycles. But I haven't had any problems with the infusions so far and the nursing staff are attentive throughout which makes it less scary. You ask how long the infusions take - well they are long and when the hospital says you will be there all day they really do mean it. My first one took about 9 hours but that is because they always do the first one very slowly and mine couldn't be speeded up as much as they hoped because they were concerned about my BP being very high (largely cos of nerves I suspect). Normally, now, the whole process (initial checks, steroid infusion, saline flush, Ritux infusion, saline flush) takes about 7 and half hours. Because there is a lot of sitting, I always take my own pillow and cushions and hot water bottles which the nurses kindly refill for me. My feet always swell from the fluid so I have been told to ask the nurses for a foot stool to use during the infusion which doesn't really seem to help very much lol. The antihistamine they give me makes me drowsy so I spend my time dozing and listening to my MP3 player (I find I can't concentrate to read). My husband always comes with me bless him so I have company which helps too because there isn't always anyone else on the day unit to talk to. I have been on oral steroids before and the whole time I have been on Rituximab (I don't take mtx) though I start trying to reduce the pred dose a couple of weeks before my infusions because I know I will have the infusion before my Ritux and very high dose steroids really don't agree with me headwise. In terms of the length of time it took for me to see an improvement from the Ritux, its very hard to say because I have been very unwell the whole time with other health issues and have had to postpone Ritux infusions several times. I was told at the beginning that they don't determine the success of Ritux until three months after the second infusion cycle (which at my hospital means months after starting). If I remember rightly I was certainly feeling better at that point but not doing quite as well as I would have liked but because I wasn't able to have my second cycle six months after the first, I think the benefits were somewhat delayed for me. I think alot of people seem to find the steroid infusion gives them an instant boost though and can trick them into thinking the Ritux is working straight away. I haven't had any problems with the infusions although I do feel very rough for a couple of weeks after each one and the high dose steroid infusion messes big time with my head for longer than that which isn't nice. For me, I think the ideal gap between infusions is about 9 - 12 months so any yuckness after the infusions is worth it for the benefit it gives.

    Really, really good luck tomorrow Allanah, and with the radiotherapy the day after. I will be thinking of you very much. lots love Tilly xxx

  • Good luck for tomorrow A. x

  • Sending warm fuzzies to T.T.!

  • Hi Allanah, how is Twitchtoes today? Say hi for me/us. Still in my/our thoughts. Keep us posted. :-)

  • Hi she put a post up to say she's home ! Xx

  • Hi Allanah, how are u? Plse Give her my regards as well please.

  • In hospital myself!!! But ok will pass on your message xxx

  • Are you ok A? Do you mean for radiology or are you poorly? x

  • Radiology but actually not terrifically good with it at the moment. But it should help in the long run xx

  • Sorry to hear that A, but hopefully as you say it should help. x

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