AgedCrone4 years ago

IT took me a good 3/4 months before RTX displayed any positive improvements.....so please just try to carry on with your life without counting the days.

i have been having Infusions since 2016

I really do know what you at going through...I have been there.

RTX now means I have a life ..I am going from 6 monthly to 12 month or longer between infusions.

So try to relax & don't think every ache & pain means RTX is not working. I used to take the odd paracetamol, or Naproxen..or whatever painkiller suits you f I had unexplained niggles.Hang on in there.....,I hope it kicks in for you soon.

I'm afraid Though the fatigue does continue...I find it comes .& goes..,but I'm happy to be mostly painfree after many years of constant pain,stiffness, nausea & bluntly you name it I had it.

Good Luck!

Savannahseger in reply to AgedCrone4 years ago

Thank you that's good to know! I think you're right, it's about being patient with it and trusting it will work. Definitely going to line up getting some anti-imflammatories just to keep me going. As i say, I'm not too bothered by the aches and pains as they are right now, it's more just the worry of what it indicates, but trying to be positive and ride it out should help

Glad RTX has worked well for you, i'm staying hopeful x

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AgedCrone in reply to Savannahseger4 years ago

In some people it take longer to destroy the cells that cause the inflammation....at one point mine depleted too fast & it was really unpleasant, but it sorted itself out,&'now I'm sitting on a beach in the sunshine .....not an ache in sight, & I am not feeling too fatigued after the flight yesterday.

So hang on in there......

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Savannahseger in reply to AgedCrone4 years ago

Sounds fantastic! that should be me too soon hopefully x

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Tessthomy4 years ago

I was in EXACT same position last year. You feel after a month that SURELY you’d feel some benefit.

After my first 2 infusions they worked a bit but not for at least 3/4 months.

Before that I had a huge flare up (whilst away luckily in this country)and felt so depleted and that it wasn’t working. I had a few days of steroids (wonderful NHS sorted that I could pick them up from the local chemist there) and it got rid of the flare.

I then had another 2 rounds 6 months after the first lot. They seem to be working much better this time around. 🤞

My lovely consultant said there’s no harm in taking the odd naproxen (with omeprozole) for any “background” pain. No steroids...so far.. have been needed.

I’m into my 14th week now so nearly up to 4 months. May have another rounds of Rituximab at the end of the 6 months (August) but she said it may last longer this time. Fingers crossed for us all ! Good luck TTx

Savannahseger in reply to Tessthomy4 years ago

Thank you that's good to know it's common with RTX and I'm glad it's started working for you!

I think i have high expectations because I have a lot planned over the next few months, with 4 weddings and 4 hen dos, 1 of which is in Vegas and one is in Spain, so I'm feeling a bit overwhelmed and scared that I will be flaring the whole time. I just need it to stay calm for a few months while I await my second round of infusions in September Fingers crossed!

Also I'm picking up some naproxen today to help with the first of 4 hen-dos which is this weekend. Send positive vibes and good energy my way please haha!

xx

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Pulfs4 years ago

As it's been said can take a couple of infusions to take real effect. Along side the retuximab I'm still on methotrexate, hydrochloquine and folic acid. This keeps me going between each round of retuximab. Been on this regime for 6yrs . I've had RA for 24years and this combination seems to work well for me. Can always tell when I'm due for next lot of infusions as more pain and fatigue.

Hope yours settles soon x

Savannahseger in reply to Pulfs4 years ago

Yeah I think I just had too quick expectations. Glad you've got a routine that works for you, hopefully that will be me soon too. Thank you! xx

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Chan464 years ago

Can take up to sixteen weeks for Rituximab to kick in. Did you definitely have Rituximab or bio similar of Truxima. ? They nearly always give the cheaper Truxima nowadays.

Savannahseger in reply to Chan464 years ago

I'm actually not sure if it was the bio-similar or not, I didn't think to ask. I think 16 weeks tells me I need to be a bit more patient then! Thank you xx

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JGBH in reply to Chan464 years ago

Hi

Do you think Truxima doesn’t work as well as Rituximab? I had my 1st 2 infusions in March and April. It’s taking some time to work and the fatigue is incredible! As well as feeling quite dizzy and a very woolly head. I was on Etanercept before and that gave me my life back but after 15 years plus and a huge amount of inflammation due to long term pain in my knees prior to total knee replacement operations, it stopped working. It has been replaced by Truxima infusions but I really feel it’s not working as well as Etanercept used to.

Would be interested to hear your opinion and that of others. Thanks.

Apologies for hijacking Chan46’s post.

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Maggsie in reply to JGBH4 years ago

I had to look twice at this post as I thought I must have written it whilst in a trance! I too had 15 good years on enbrel before a brief switch yo benepali which was disastrous. Tried to go back to Enbrel but it just wasn't the same. Had my first round of Rtx last week (having decided to push my TKR back to get the general RA sorted) and I feel like I've been run over by a bus, pain and swelling and dreadful fatigue. I'm due my 2nd round next week and hoping for some improvement.

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JGBH in reply to Maggsie4 years ago

Hi Maggsie

Thanks for your comments. Yes Enbrel was a top class biologic! Unfortunately the biosimilars are not really working as well and not for so long! No matter how much the medics shout biosimilars are the same as originals they are definitely not! They are similar but do not quite work in the same way. They are cheaper that is why they force us to go on them even though they aren’t working that well for us patients.

Had my 2nd Truxima infusion on 11 April. The pain is much less but I still have pain! The fatigue is incredible!! I am unable to function in doing day to day activities! I fall asleep all the time. This never happened before.

Do you know whether you are on Rituximab OR its biosimilar Truxima? I was told I would have Rituximab but in fact they gave me Truxima!

Do hope you will feel better soon.

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Maggsie in reply to JGBH4 years ago

Hi, I'm on Truxima, I checked on the infusion bag.

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JGBH4 years ago

Thought so... it’s cheaper than Rituximab. Thanks for replying.