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Date: 07.02.2018
From: SammyO

Subject: Rituximab Infusion

Hello everyone, I was diagnosed with RA five year ago and have tried a list of treatments. I am due to have a Rituximab Infusion next week and really worried about it, it is the first infusion I will have had and have read some horror stories on the internet. I havent tolerated any of the other treatments at all and have had really bad side effects. Ive been on prednisolone 30mg for past 5 years so need some treatment to get off this. Ive posted here a couple of times for advice and always got lots of really good support ....
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Date: 08.02.2018
From: Colin W

Subject: Re: Rituximab Infusion

hi Sammy , being on that high steriods is not good , it can realy damage your health , get your eyes checked , it can increase the pressure on your eyes & cause glaucoma & you run the risk of developing diabetes type 2 , this is what happened to myself , my CRP was 240 for some reason & only steriods got it down

I was then given Rituximab Infusion & that helped alot , only problem is I need several joints replaced & they dont want me on any biologic when having surgery , The worst thing about Rituximab is how long it takes & you will start to feel better within a few weeks & hopefully get your steriods down to a maintaince level (10mg)

dont worry about anything you read , not everything is true & in the UK they have not had any problems with the infusions + they will give you a nice steriod infusion as well , dont know of anyone in the UK having problems on this drug , it works very well for RA , hope it goes well
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Date: 08.02.2018
From: lucy

Subject: Re: Rituximab Infusion

Hi Sammy, I have been on rituximab infusions for around 5 years now and it has really helped me. Before I started on it I was in quite a state as I could hardly walk. I had no problems at all during the infusion which took around 6 hours the first time but it is painless. I get the infusions approx every 7-9 months now and it has been
fantastic as far as I am concerned, I had been on enbrel before the rituximab and it didn't help me at all. Up until now I have not had any side effects from it and wouldn't worry too much about
what you have read. If you want to know anything else about it then please ask. It did take around 4 months before it took affect though.
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Date: 09.02.2018
From: SammyO

Subject: Re: Rituximab Infusion

Hi Colin and Lucy
Thank you so much for replying. I feel much better knowing your experiences. I had read some information and I was considering saying no to the treatment because of what I had read.
The past five years of prednisolone have been hard - I like the drug because it keeps me walking and working but I have a huge puffy face all of the time to the point people I havent seen in a while dont recognise me. Colins advice about my eyes is 100% correct - I have cataracts now on both eyes and eyesight is deteriorating, my bones have thinned and I have about half of my hair but my GP isnt sure if this is down to the pred. I really want to get off it. Im 46 and before I started to develop this disease I was active, now I do very little. Just tired all the time and still in a lot of pain. Ive tried 8 DMARDS/Biologics and was beginning to lose hope but my GP is fantastic and asked for me to have a second opinion from another Consultant and he has been fantastic too. Thanks again for letting me know how you got on with this infusion, it has really helped.
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Date: 04.03.2018
From: sammy0

Subject: Re: Rituximab Infusion

Hello Colin and Lucy, Iām hoping you can give me a bit more advice ... I think you need to start charging me !!
My infusion is scheduled for 12th but in the meantime as Colin predicted I have been diagnosed with type 2 diabetes. So seeing some about that this week.
My right Achillesā tendon is agony, has been like this for about a year but last few weeks much worse to the point it is hard to put my shoe on.
My biggest problem at the minute is my heart rate ... my heart seems to be thumping... missing a beat and then racing again. I had an Ecg yesterday and gp felt all was fine. I now seem to have ticked off every side effect of high dose steroid use (having taken it for nearly six years). Is my heart the next to go ?? Not sure now if the anxiety is causing me to have this racing heart. Can any of these side effects be reversed if I get off the pred after the infusion. Iāve been off sick now for 3 months ... Iāve gone from someone who would walk 5-10 miles each weekend to someone who canāt get between rooms in my house. Iām really starting to get scared now and even made arrangements for my daughters should anything happen to me.
any of your advice would be welcome.
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Date: 04.03.2018
From: lucy

Subject: Re: Rituximab Infusion

Hi Sammy, Sorry to hear about the diagnose of diabetes, my daughter has type 1 and uses insulin but usually with type 2 it can be managed with diet and sometimes pills so try not to worry too much about that. Have you had your thyroid checked? I used to get palpitations and they were quite scary as my heart would race then miss beats, stress can cause that and drinking a lot of coffee can do it too but after I went onto tablets for an under active thyroid it more or less stopped. It is reassuring if the ECG was fine. I'm not too sure about the side effects from steroids as it was mainly steroid injections that I got but hopefully when you start the rituximab you should be able to get off them, it usually does take a few months before you will feel the full benefit of the rituximab. I could hardly walk from room to room either before I went onto it. I know it is hard but the treatments now can make a huge difference. Don't worry about asking anything else as I am happy to help if I can. x
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Date: 04.03.2018
From: Sammy0

Subject: Re: Rituximab Infusion

Hi Lucy
You are very kind. I just get so much reassurance from you guys, I trust your advice. I think Iāve started to fixate on my heart beating and nights are worse maybe it is the stress. My gp seems to give me one bit of bad news after the other ... the diabetes was a shocker .. I donāt drink, smoke or anything else and I eat like a rabbit so not sure what else to do. Itās all a bit too much at the minute.
My life is unrecognisable and itās hard to see a future but knowing you have been there and got through helps. I am praying the rituxan helps and that I can get off the prednisone... my body is falling to bits with it. Only upside is I havenāt one wrinkle ... the fat stretches the skin on my face too tight ... every cloud !!
Thank you for replying.. itās just good to know someone understands. I hope you are doing ok. Take care. sam
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Date: 04.03.2018
From: lucy

Subject: Re: Rituximab Infusion

Hi Sam, Well having no wrinkles is a big plus lol, I can't say the same unfortunately. I buy all the creams but i don't think they work lol. Seriously though, the steroids do cause a lot of side effects but when we are in severe pain we will take anything. I hope you find the rituximab helps you as much as it has helped me, i really was in a bad way before is started it and now I go swimming and enjoy walking (when the snow is away) Good luck with the infusion on the 12th, let us know how you get on, I would take a book to read as it takes a good part of the day for the first infusion but it is painless. x
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Date: 05.03.2018
From: Colin W

Subject: Re: Rituximab Infusion

hi Sammy , sorry to hear about your diabetes , just hope it may change if you come off the steriods , as for rituxamb take a book & some music as it takes a long time , but its the best of the biologics around & wish I was still taking it , let us know how you get on
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Date: 14.03.2018
From: sammy0

Subject: Re: Rituximab Infusion

I had my first infusion on Monday and everything went well. It was a very long day but I was well prepared after your advice. I had no complications at all.
When I got home my eyelids and scalp were burning but this has gone away now. For the first 24 hours after the infusion I could walk with no pain .... it was me six years ago !!! But Iām guessing this was down to the steroid they gave me as slowly the pain and swelling is coming back as the steroids wear off. Iām so pleased I didnāt back out of this treatment ... thanks for your advice and reassurance... hopefully, fingers crossed after my second infusion on the 26th I might be a bit closer to the old me.
My employer is in the process of getting rid of me ... in past 8 years I have had a tiny bit of time off .. my goal is to get fit enough to find a new job and tell them where to stick thiers ....
thanks again Lucy and Colin x
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Date: 15.03.2018
From: lucy

Subject: Re: Rituximab Infusion

I am pleased the infusion went well Sammy. Funny, I had burning in my eyes after the first infusion as well. It can be a wee while to get the full benefit of it but hopefully it will help you as much as it has helped me. You should seek some advice regarding your employer as you do have rights. Good luck with it all and keep in touch and let us know how you are getting on. xx
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