Rituximab here I come!!!

[141960]

Following my visit to Rheumo last week to discuss my enbrel immunity, it was as I thought, suggested that I try Rituximab. I had my bloods taken yesterday & they are testing for everything, then have another appointement on the 9th April to see if I am ok for it & understand the literature etc... so all being well, I have to have more bloods about 3 days before the first infusion which will consist of a day in hospital, firstly a steroid infusion, then the Rituximab over a period of about 6 hours. Then providing everything is ok, i have to have a second one 2 weeks after. So will keep you posted as to how it goes!

[NeonkittyUK]

Had my first duo of Rituximab last April. It has done more for me than anything has in the last four years. Hope it works as well for you!

[141960 in reply to NeonkittyUK]

Thank you for taking the trouble to reply and your good wishes, that gives me a lot more confidence and it was very kind of you. I will keep you posted how I get on! Kind regards

[NeonkittyUK in reply to 141960]

Please let us all know how it goes and I do hope it is the med for you. The Rheumy hosptial staff are wonderful and they are very vigilent all the way through the infusions. As anyone will tell you who has had them .. it is a long day so take things to occupy you . .ipod/book/mag and whatever drinks and snacks you like but they provide you with lunch and drinks too. Just plan to take it easy if you can the weeks you have them as you can feel a little tired for a few days. Can't say I felt any more than that. Many more on this board have much greater experience of the med than I have as I have only had one duo of infusions but probably will need to go back soon. Good luck for your imminent meeting for approval/discussion.

[beckybooboo in reply to NeonkittyUK]

I'm just going through the motions of blood tests etc and due my first infusion on 16 April, it's so good to hear a success coz no dmard or humira has done anything for me so far, leaves me with some hope that something will help. Keep going & thanks for the feedback x

[beckybooboo]

Hello there, I too am due to have my first infusion on 16 April but just going through blood tests and getting the ok for first treatment, be interesting to keep in touch with how you get on please if you don't mind? Good luck with it all x

[141960]

Hi beckybooboo yes that would be great! No probs. I have just had my bloods done on Monday so havnt got the date yet, but go back on the 9th (next Thursday), so should be soon after then I would think. I will let you know. Meantime good luck & hope it all goes well for you. Kind regards

[NeonkittyUK in reply to 141960]

141960 and Beckybooboo .. have faith Rituximab did for me what Enbrel and Humira could not . . eliminate inflammation .. control and get rid of a lot of the pain so I seldom have to take painkillers and hardly ever touch anti-inflamms and give me more mobility. At the moment a couple of osteo probs from old are troubing me and awiating podiatry to get their act togeter but I am better than I gave been for years on Rituximab and it has lasted a year for me since my first infusions so good luck you two and let us know! My rheumy review is in a week or so so I shall know then if I need repeating soon. NK x

[EmLem89]

Good luck! Hope it works as well for you as it did for me! I had run out of tablet options, nothing was working I was in lots if pain a lot of the time and just seemed to get horrible side effects, so my consultant put me on to Rituximab. Had my first infusion in Aug 2012...haven't needed any more since then! It's definitely the best thing I've had for my condition. Don't get me wrong I'm not 'cured' I still have pain and I have small flares sometimes but I considerably better than before.

Hope it works as well for you! Let us know

Xxx

[NeonkittyUK in reply to EmLem89]

Amazing EmLem! .. yours has lasted so long! Also done such great things for you as it as for me. I am delighted mine has lasted a whole year. Was anxious as I had failed Enbrel and Humira and tablets before then. My rheumy said some of her patients have gone two years but on average about a year but a year is good to not have to go back. x

[141960]

Hi there, thank you so much for taking the trouble to reply to me! It took them 13 years to come up with the inital diagnosis of RA. I was being treated for an inflammatory condition, but they werent sure what it was, so Im glad of anything that makes it better. I have had steroid injections in my shoulders, elbows, ankles, wrists & been on Enbrel for about 4 years with some of the other drugs & that was ok for a while. Also tried MTX which I didnt tolerate well at all. I had sulfasalazine, which didnt work & Plaquenil & the Arrava (Hydorxycholoroquine), which gave me peripheral neuropathy (Numb feet)! Have been off that about 2 years & still not got the feeling back completely!) That makes me feel a whole lot better to know that some people have had good results. I will keep you posted as to how it goes. So glad your feeling better such an awful time when you have the flare ups I know! Take care. Kind regards

[beckybooboo in reply to 141960]

Hello there, Just to up date you I had blood results and all ok, having my first infusion on the 16th now got to ring 3 days before to confirm that I feel healthy enough to go ahead.

How did you get on today? have you got a date to have your first infusion?

I do feel a tad anxious about having this but to be honest after almost 3 years of this and other drugs I just want something to work for me

I have got down from 20mg steroids to 17.5mg not much of a jump I know but just the slight decrease has made a difference - I hate taking the steroids been on them for about 16 months now.

Dont forget to let me know how you got on today please and perhaps we can support each other through the next step?

Love and light x

[141960]

So according to the Rheumo nurse that I saw this week, she told me that there was some confusion over the protocol surrounding Rituximab! Spoke to me like I should have known!!! I have to go back on a low dose of methotrexate, 5mgs, possibly up to 7.5mg, for a few months as well as the Enbrel, as the combination has to be tried before I can be granted the Rituximab! So came out with a prescription for Folic acid & methotrexate. So it goes like this, Metho on Monday, Enbrel on Wednesday, Folic acid on Friday, Sat & Sunday, along with my steroids daily & amytriptylene in the evenings for fibro!!! I sure would rattle if they shook me & Im sure if I was a horse Id be glue by now!!! Still I suppose I have to try these things & see how it goes! Will keep you posted.

[NeonkittyUK in reply to 141960]

Hope you feel better soon and sorry for their change of plan. Hope this new combi works for you and if not Rituximab is plan B. NK x