Rituximab: Hi, I am soon to be started on Rituximab and... - NRAS

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Rituximab

Hi, I am soon to be started on Rituximab and wondered if anyone can share their experiences of the infusion process and how they get on with this drug. Many thanks

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I have been on it since 2016.

The first infusion can be lengthy whilst your Biologic nurse observes how you are feeling on it. You have obs every thirty minutes & most people settle on 4/5 hrs for each 6 monthly duo of infusions. I have driven myself to & from the clinic since day 1 with no problems.

For the first couple of infusions I did feel a bit wobbly for a few days.....but no really nasty side effects...but it did take a good 3/4 months to really kick in.

I have now “graduated “ to yearly- or hopefully longer intervals between infusions.

I have’t need any painkillers except the odd Naproxen or Paracetamol.

For me it has been all good.

Hope you have the same reaction.

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Thankyou, just feeling a little nervous about the thought of the infusion

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Just ask the nurse to put the canular 4/6 inches above you wrist so that you can move your wrist without it being uncomfortable...99% of nurses do...but the odd one doesn’t.

Try to drink plenty of water the morning of your infusion too .....now that is a skill you will learn....wheeling the drip stand to the Loo!

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Great tips, thankyou so much

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Hello Buntybear.

Like you I will be starting Rituximab very soon (without Methotrexate in my case). I have read a few old posts on here where others have recommended drinking lots of water (2 litres) during the infusions to help to prevent headaches. I hope we will also get some recent feedback on what to expect to feel like during and for the next few days after the infusion.

Let's keep in touch so we can swap experiences.

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Great idea, not sure when my appointment will be yet but would be nice to compare notes

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I don’t have Mtx...just two paracetamol & an antihistamine prior to the Rtx after the steroid infusion.

It really isn’t too awful....obviously the first infusion is a magical mystery..but I’m sure once that is over, you won’t be at all apprehensive. But don’t expect to wake up the next morning feeling miraculously “cured”.....it takes a while.

If you take a BP pill....ask if you should take it the day of infusion...I was told to skip mine as the Rtx does tend to lower BP.

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That's all good to know, especially that the Rituximab could lower my BP. When I had recent steroid injections into each shoulder my BP dropped very low almost immediately and I fainted! I'll make sure the nurse in charge of my first infusion is aware of that, just in case.

I'm apprehensive, like Buntybear, but after nearly 12 months of pain and fatigue from RA (because I've had bad reactions to the traditional DMARDS and Benepali has not worked for me) I really want to get this disease under control and hopefully slow down the degeneration to my joints. Fingers crossed!

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It’s because of the effect of the infusion that plenty of water is recommended to keep BP normal.

I have had terrible reaction to rituximab infusion and I’ve just finished my second cycle but it’s not working for me.

Good luck and I wish you well

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Thank you I will drink plenty of water. Sorry it didn’t work well for you and I hope they find something soon that does.

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It seems that drinking plenty of water is a must, sorry to hear it hasn't worked for you, it's an ongoing battle with this awful disease. Hoping you find the right drug for you very soon.

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Thank you, I so wanted this one to work for me as I have lung issues because of RA and its the best biologic drug for lungs

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“Magical mystery” 😆

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I’ve had this infusion now for about five years. The process, once you’re cannulated can be boring, interrupted by regular checks on bp etc. So light reading is good. Where I get it done in edinburgh they give you piriton antihistamine and a steroid shot which can make you feel euphoric. I have diabetes so the steroid sends my blood sugars high, but I monitor that and Medicare accordingly. It’s worked very well for me so I wish you very good luck.

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Thank you for your feedback and advice. 🤞🏻

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Thankyou, it's re-assuring to hear from people already on Rituximab

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Hello I've had six rounds of retuximab, the last one was November 2018, between 9 months and a year each time. I've not experienced any side effects. It's been a marvellous drug for me. I've had quite a few different struggles, including eyes and lungs, and drugs over 34 years, and I'm so grateful for it. It makes a big difference.

Don't be too concerned about the infusion, just take something to occupy youself and check if they give you lunch, my hospital doesn't so I take some food.

Like the other replies have said you will be monitored every 30 mins and the nurses keep an eye on you. You might start to chat a little to other people in the room. There's 7 chairs where I go. Some people get a little sleepy after the antihistamine and it goes a little quieter but that's nice. Take a cardigan or scarf as sometimes you can feel a little chilly with not moving a lot. Once the drip is started it's just a matter of occupying yourself.

Just rest up the next day as it's quite a long day with the travel. I do hope it works well for you.

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Thank you for your feedback and advice 🤞🏻

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Thankyou, I'm starting to feel a bit more comfortable about the process now.

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The nurse at our clinic offer us blankets in case we get chilly. :-)

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Thank you for the info, I already feel less nervous 😊

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Very straight forward. I take my home comforts...Own large brightly coloured Whittards latte mug, Android tablet with lots of TV/Films downloaded, headphones, comfortable clothes that you can easily get on and off whilst wearing a canular as temperatures can vary. if you prefer a particular tea or coffee then take your own and brew there, depending on weather and how you react to the drugs take a water spray for the face from somewhere lije Superdrug or Boots, you should get a choice of sandwiches provided free of charge along with yoghurt, crisps, chocolate bar and fruit at midday, If you are still there around 5:00pm you should be provided with a choice of cooked meal and dessert. Hope it all goes well, I'm into my third or fourth year of RTX and next booked in for my two infusions in May, Important...any headache, the feeling of an instant head cold or any other concern tell a nurse immediately. No need to worry they will just slow down the infusion and you are monitored regularly anyway, Good luck!

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Thank you for your feedback and advice 🤞🏻

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Thankyou, some good points and advice

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You sound like me! I practically “move in” for the day 😂

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Thank you for that Juneann xx

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Hello. I’ve had 2 rounds of this now. With 6 months apart. I started last June then had another round in January this year.

The first round didn’t seem to work to its full capacity so my consultant said to do another one.

I’d say this one has worked much better but still feel it will work better in time. (Can be 16 weeks)

As already has been said this is not a quick cure and takes quite a while to get into the system to work. That said the side effects are practically nil.

The day is definitely a long one but goes strangely quickly. There’s always so much going on. Take some lunch drink plenty and take some reading material.

I am due for another round maybe in August. I think the most difficult thing is trying to work our flu jabs around the infusions.

I’ve been told I have to have one either at least a month before or 2 months after. At least this time round I’ll be clear to have one around October. Good luck and let me know how you get on TT x

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Thank you for your feedback and advice 🤞🏻

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Thankyou, all good advice

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I have RA and have devoted a rare side affect of the RA which is Malt Lymphoma in my lungs. The cure is Rituximab four sessions every four weeks along with chemotherapy. As the others have said it is very boring and the first treatment takes ages as it goes in very slowly to make sure you don’t have any bad reactions. I feel a little tired after to treatment but am now half way through and it’s all good. So don’t be to worried about it, if it helps go,for it

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Thank you for your feedback and advice 🤞🏻

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Thankyou, glad to hear its working for you too

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I had an infusion in January and one in February the 1st one was longer than the second one

I basically thought I would be able to catch up with work and do Reading but the antihistamine knocked me out and I ended up sleeping on both of them and felt quite refreshed afterwards

I was tired a few days later after each of them but apparently that is normal

I can honestly say I have not needed barely any painkillers and my arthritis which is usually through my entire body has been virtually nil. Only problem I have is extreme tiredness That is usually the day after methatextrate

I was very apprehensive to have this treatment because I had read stories about people getting bad side-effects but it really was not bad at all and I would strongly recommend it

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Thank you for your feedback and advice 🤞🏻

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Thankyou, feel reassured

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Thank you so much for the feedback Adolly xx

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I'm due to start Rtx next month, these comments have been really helpful. Thankyou.

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Wow, lots of great advice here. I was anxious about the first one but feel as though I'm an old hand now I've had 2 courses (4 infusions). I drive myself there and back and have had no problems with the infusions.

The first one takes longer as they monitor you quite carefully. I ask to lie down, although I think most people sit in a hospital chair. It's good to take lots to occupy yourself. I doze quite a bit.

As someone else has said, the location of the cannula is quite important. I think a Dr does this bit, and if they're not switched on they put it in a silly place. The last time I went the cannula was badly placed and every time I moved, it dislodged and set the alarm off. Because they like you to drink quite a bit it does mean you need to get up to go to the loo quite a lot.

During the first one you'll have your BP taken very regularly and they keep a very close eye on you so you'll feel in safe hands.

Good luck with it. Looking back now I've really only just started to see what a difference it's made to my life. There was a big blip almost a year ago when the effect had clearly worn off and nobody realised, but since this period and my repeat infusion during the late summer I feel a lot better.

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Thankyou, glad its working for you, some really helpful advice and re assurance

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I've had infusions for last 6yrs on 6mth intervals. I'm due my next on 7th May. When I arrive I'm asked to do a urine sample and my bloods are checked which are taken a few days before. Once these are shown to be ok the nurses then puts in a canular and the retuximab is ordered from the pharmacy and collected ,best to drink lots beforehand to plump up viens. It's then flushed and an antihistamine is put through prior to the retuximab. I ask to have mine put through slowly so as not to get a reaction. BP taken half hourly. Drink lots so as not to get headaches. The piriton usually makes me sleepy so I ask for a blanket as I tend to then feel cold.

I'm usually there from 8 30am till about 4pm so take my own lunch and things to occupy the time. The next day just feel a bit washed out and tired but nothing else.

Good luck I'm sure you'll be fine as they closely monitor you.xx

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Thankyou for your advice, really helps and starting to feel more relaxed about it folloiwng such great comments from everyone

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yes me too!

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Hi Buntybear (such a cute name), just an add on from my last post...if dates arranged for you don't suit then try and change them asap as certain hospital departments can be stretched most days. The reason I say this is maybe around holidays and Christmas, think ahead so that you get your infusion and allow time for it to kick in so that you are ready for important dates. Nothing worse than feeling the twinges of a flare only for it to take a hold and get worse over weeks and no infusions booked in but a holiday on the horizon.

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That' really good advice, thankyou. And the name is derived from a friends dog :)

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Hi Buntybear

I have had Rituximab infusions every 6 , 9 or 12 months apart, for the last 11 years. I also inject with methotrexate weekly. I had the last one this February and this time it was infused over only 2 and a half hours. Maybe because I have had it for so long. I think the first time you have it, it will be over a few hours.

I never really had any side affects apart from a bit of light headedness in the early years. It can lower your blood pressure during infusion. You should be closely monitored though so you should try not to worry.

I can honestly say it has been a life saver for me although I know it doesn't work for everyone.

I hope you find this reassuring.

Good luck and best wishes. Louise

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Thankyou so much, it is reassuring. Glad it is working for you too.

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It is wonderful!!!!no problems,I felt better in about a week still taking it every 6 months. Good luck. Hope it works for you like it does for me😃

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Wow hope it can do the same for Buntybear and me!

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So glad it is working for you and thankyou

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Hi I’m also going to start it soon any info would be good .

Sandie

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Had infusions for about 2 or 3 years - seems to have the RA under control, but it can't put right the previous damage. Having said that I found an increasing problem with digestive acid and blood pressure after the infusion - I suspect I wont be having any more Rituximab. Still think it had positive results overall.

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Thanks for the info - that’s encouraging.

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Thankyou for the info, it helps to hear peoples views

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Hi, my wife is now at the half-way stage of chemo treatment for follicular lymphoma. The treatment includes CHOP and the monoclonal antibody Retuximab and involves an infusion once every 3 weeks. Within a couple of days of the infusion the unpleasant side effects kick in over a week period. They include back-ache, stomach cramps, extreme loss of energy (fatigue) and the sensation of heavy legs. The effects cause her to spend 2 or 3 days in bed. After a couple of weeks of the infusion at the hospital she starts to recover and at the height of recovery she starts her next chemo session. But the good news is that by the time she got to the half-way stage a PET scan showed substantial killing of cancerous cells in the back (23 cm reduced to 0.9 cm).

Not a pleasant experience but well worth it in terms of efficacy. But please note that the treatment discomfort varies with individuals. Incidentally she also has to be (self) injected with a chemical as a part of the treatment. She lost her hair by the time she got to the second treatment but managed to buy a wig for ca £110 that very closely resembled what was her crowning glory.

Sorry that my answer is so blunt, but that is a recurring sequence following each infusion.

Best if luck!

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Sorry to hear your wife has to endure such intense treatments, but sounds like she is getting positive results for the cancer which is the best news. Thankyou for sharing this information and hope your wife continues to recover.

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But you must remember CHOP therapy includes very strong chemotherapy drugs. Buntybear is only going to have Rtx with an antihistamine, a steroid & possibly Mtx...so as 99% of the replies here have said the chances of any side effects like your wife is experiencing are very unlikely.

For one thing Rtx infusions are normally started as two infusions two weeks apart every 6 months...nothing like as regularly as your wife is having it. I have been on Rtx since 2016 & the only side effect has been increased tiredness the week after infusion.

I do know someone who had CHOP, & is now very well....so she thinks all the side effects she experienced were worth it...I do hope your wife is as successful.

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Hi Buntybear, I am having my next infusions the start of my 2nd set on Wednesday. They are giving it after 5 months because I am still in a lot of pain. I'm not sure if the pain has to do with where I live (Canada). It has been extremely bad winter here, also I had 2 injections a month after which are Prolia and the flu Jab. I have been in a lot of pain since. The first couple of weeks I felt better after the infusions. My GP said I should wait longer before having the 2 injections and to have them in separate arms. I am going to ask the nurse on Wednesday what she thinks. I had no side effects and drank loads of water as I did for the Tocizumab infusions and I had no headaches for either. I took my tablet so I could listen to a couple of audiobooks and the 6 hrs passed quickly. I am looking forward to Wednesday and hopefully the slow improvement will continue. I have also started aqua motion and tai Chi which I am hopeful will help with my balance and strengthen the muscles in my legs. I hope it works for you, good luck. Take care. Sue

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Thankyou for your words of support Sue, I am waiting for my appointment date and have been feeling quite anxious about it all. Good luck with your next infusion and hope you see further improvement.

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Hi, just to let you know, I last infusions have been good. I have had a couple of flare ups which only lasted a short time. I felt good yesterday but today I am in a lot of pain and tomorrow I am having a cateract surgery and I am unable to take any meds apart from blood pressure tab with a sip of water. I am struggling to get off the couch today. I hope that I feel better tomorrow.

Take care, Sue

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Hi. I’m also just about to have Rituximab, had 3 failed DMARDs, just hoping it’s as good as people say. Good luck 😌

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Thankyou, you too. Haven'f got my appointment date yet!

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I’ll add to the above is that different places site the cannula differently. I’ve been on R for 5 years now and it’s just been moved from our chemo ward to ambulatory. Even though the (expert) cancer nurses trained the new team to site it in the back of the hand, ambulatory are putting it in the crook of my elbow, which I don’t like!

Also, ask what food you may get. I’ve gone from a sandwich and biscuits in the chemo ward to a full menu choice on ambulatory!

I have my infusion every six months and take weekly Methotrexate. Patients decided themselves when they need their next cycle, as long as it’s over six months here. I have to have mine on the dot as I have a very erosive form of RA.

I’m not told to drink lots of water, but I do anyway!

Wear layers - I always end up freezing.

Take a book, but be prepared for sleep! I’m never affected in the slightest by meds, but the antihistamine knocks me for six.

I always get my husband to take me and wait til the cannula is in, after a bad experience one time. I’m also needle-phobic so crushing his hands helps! He also picks me up as I’m very light-headed, which you too may be if you’ve BP issues.

They say it should work in around 4 months. When I went on it I’ve never been more ill in my life. The RA had caused so many blood problems I was also under a haematologist and also lost one and a half stones. I’m a size eight so this was not good. Just to explain, I really was so ill I was swigging morphine from the bottle and it didn’t touch the pain. I was so poorly 24/7 I told my husband and my GP if I didn’t improve, I’d give it five years, spend all my savings and then pop off

It actually took 18 long months to work. Very unusual, but I’m a bit contradictory anyway with my health!

I’ll always have pain due to joint damage, but 5 years on I’m still here, enjoying life and thanking God for Rituximab.

Wishing everyone about to start on this drug the very, very best.

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Thank you for your comments, its reassuring. Hope you continue with good health on Rtx

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I hope it went well for you! Im considering asking my rheumo about starting rituximab i was just wondering how long it usually takes to sort out an appointment for the infusion? My department usually take a while to sort things so hesitant to try a drug you only get every 6 months

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If you were only recently diagnosed your Rheumatologist will probably want to try DMARDS first and give them sufficient time to work. It’s only if they don’t work for you or your body cannot tolerate them that biologics will be considered. I suggest you discuss your progress or lack of it with your Rheumatologist at your next appointment and what alternative treatments might suit your disease profile.

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Ive tried DMARDs and two biologics which both havent worked

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Oh gosh bad luck.

I was put on Truxima because Methotrexate gave me lung problems so I had to stop taking it and then we tried Benepali but it was not very effective.

Even on Truxima I still have swollen and tender hands, knees and ankles but am hoping that will improve....

I gather from my consultant that Truxima/Rituximab is preferred for those with existing lung problems or who have had repeated chest infections on other biologics/biosimilars.

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Been prescribed Rituximab this morning for RA , infusion, just wondered how it’s working for you after 3-4 months ?

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It's 16 weeks today since my first infusion and I'm pleased to report I'm feeling better all the time. I'm really pleased with the improvement and so is my consultant, whom I saw last week. I gather 16-24 weeks is usually quoted for seeing the best effects of the drug.

My DAS28 score is down from 8.2 to 5.9 so going in the right direction. My hands are still a bit swollen and tender, especially first thing in the morning. Ankles also swell up a bit if I'm on my feet a lot. (Consultant did look at my feet this time.) He's approved that I should get a second cycle automatically in mid-November and, after that, if improvements continue, we'll consider a steroid taper programme.

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Thank you for your prompt reply as feeling very anxious - I’m so pleased your DAS 28 score is down and continue to feel better all the time - very encouraging , thank you again

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Hope it works well for you too. There’s some very helpful advice on here of what to expect when you go for your first infusion.

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