Infusion for RA: Saw my rheumatology consultant... - NRAS

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Infusion for RA

Saw my rheumatology consultant yesterday and he's recommended an Infusion because I also have pulmonary fibrosis which rules out mtx. Anyone who's had this treatment give me some ideas of what it is as I felt too ill to question him! In the meantime I'm back on Prednisolone 20 mg. Thank you for any help Marie

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I have infusions. I find them great , depending on what drug they prescribe they are different times long.

I go into the day room, they put a canny law in my arm take my blood and hook me up to the IV! I sit whilst I get a tea and a magasine and after the drugs gone in I go home after an hour just relaxing. The nurses are eith you the whole time and I chat with others who are having their infusions. They check your blood pressure etc and if you feel unwell you just tell them.

I feel much better on this drug but do have to tell you I had two other infusions prior to this which were not as effective. I with some of them also was given a steroid before the drip but not with this one .

Some of the drips are monthly or even six monthly, some take eight hours some take one hour. So it depends what your doctor feels is best for you but I can definitely recommend this method of giving the drug x

Do ask lots of questions of whether this drip will be ok with your lungs to double check before you start!

Good luck and I hope it improves how you feel very quickly x

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Thanks for your reply. The consultant did take into effect my lung complaint and will speak to the other consultant. Just don't know what the Infusion will contain. Still will try anything to ease the pain.

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There is a great section on infusions on the main Nras page nras.org.uk and the helpline are amazing. Once you know which drug they have selected you can look them up but for me it's the be patient trial and error but with this one I felt better within a week! So hope you feel the same xx

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hello,,first sorry for my English,,, i had infusion called roActemra for 9 months ,,i went to the hospital every month from 9hmm finish 5hpm they took blood wait for the results (take hours to come) when are ready doctor comes and explain to you some of the them if they are good u can start if not they cane tell u to come next time ,,, if they are good you start your infusion in the arm connected (now it depends how many hours tooks) mine it was 4hours. a whole history it doesn't work for me i couldn't work and move my doc stopped and now i just started another one (October) i am not feeling well but it's still early to know ,,,i hope all the best for u

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I hope this new drug works better for you Konstantina. I have tried a few different ones too. Rituximab ( Mabthera) has worked very well for the past 7 years and I haven't had side effects only tired for a few days after.

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Hello Kikideelili - I'm so glad to know that feeling tired after a Mabthera infusion isn't unusual. I had my first one yesterday, and slept on and off for most of the day! Slept well (first time since goodness knows when) last night and am drooping today - hardly able to stay awake. Noticed the effect of the steroid they gave me with the infusion this morning because my hips, back and legs were not as stiff as normal. Family very sympathetic and keep telling me to go and rest! Nice. xx

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Oh bless them that's exactly what you need......rest! The steroid drip is a godsend isn't it although sometimes gives me palpitations. If you think about it the Mabthera is killing our cells so bound to tire us out. Next time you go for it ask one of the nurses if they have a patient pack from the drug company Roche. I got one and it was useful.

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ohh dear Kikideelili 7 years you really give me a BIG hope THANK YOU SO MUCH ,,,this is what i'am doing now Mabthera youpiiiiiiiiiiiiiiiiiiiiii kiss and take care

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Glad I've given you hope. Keep positive x x

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(0_o)

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Thanks everyone. All this information is very helpful and I will certainly ask more questions when I go for the Infusion. Was just not fit when I saw the consultant but since he increased my steroids I'm feeling much better. Can't wait to be back to normal!!!

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I always write my questions down then if I'm feeling a bit passive I just give them the list lol x

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Hi there

You've been given some great tips and information by others here which is wonderful. However, if you want to actually talk it over with someone we have telephone support volunteers who we could match you with one of them who has had infusions etc. themselves. Sometimes just chatting it through can really help. If you want a call just get in touch with our Helpline next week ( Mon - Fri 9.30-4.30) 0800 298 7650 or drop us an email helpline@nras.org.uk and they will take your details and arrange a mutually convenient time for the volunteer to call you, it can be any time that suits including evenings or weekends.

Bye for now

Clare

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I reluctantly agreed to have rituximab infusions after two Anti-TNF's failed for me last/this year (Enbrel and Humira) and felt awful and freaked out about having to have this done but had to have something which would stop my RA from breaking through and rendering me immobile and unwell. I have only had one duo of infusions (they give you Rituximab in two sessions two weeks apart and then you dont usually need a second duo for some time thereafter. Average being 6 - 9 months. They cannot give infusions any less than 6 months as these work on depleting your B cells.) The great thing though is you don't have to take a tablet or inject for that each week. It gives you some freedom if you think of it that way. As Alannah and others said there are other infusions which are given monthly and take an hour. Rituximab is given much more slowly but monitored so efficiently. If you react .. they slow it down and precautionary meds such as Piriton/antihistamine are given prior to the infusion to try avoid allergic reactions. They would stop of course if any problem arose and stop the procedure. My Biologics sister and consultant discussed at length with me about Rituximab and you are given excellent info packs/wallets/DVDs. Hope you can find something which suits you very soon. I too read all the NRAS literature which was excellent and on my initial venture into biologics Victoria NRAS was very helpful, thank you! Good luck.

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Thanks again for all the help and information you have given me. From the info I received off the Dr it sounds similar to that Rituximab as I will have to return after two weeks then he hopes it will last a few months. Only time will tell but anything is better than at the moment

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I to have fibrosis and use ambiance oxygento walk, I start my Infusion on friday this week rituximab they say this is the only one they will use if you have lung problems

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Good luck Hybrids I will be thinking about you. Make sure you take a paper or a book because you will be there all day. I always have a nap in the afternoon.

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That's interesting Hybrids, I'm lucky my pulmonary fibrosis is under control at the moment. It certainly sounds as if I'll be on the same. I will phone the rheumatology nurses tomorrow for more info. Just want my life back. Good luck on Friday, please let me know how things go for you.

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