Well I’ve finally got my infusion dates , first one 17/4 second one 1/5 but because my inflammation doesn’t show in my blood I’m not sure how they’ll manage it after that, possibly CT scan of lungs or me feeling pain and breathless maybe. Any advice I’d really appreciate it.
Take care
Wendy xx
Don,t overthink things. Everyone reacts differently to how the infusions affect them . Just get set up, read your book or deal with your emails & it will soon be going home time.
The first treatment is usually the longest but after that 5hrs is about the limit. But do take plenty to keep you occupied or the time does drag. Also take a sweater because most people feel cold,& you can’t snuggle down under a blanket as you are woken for Obs every 30 minutes.
Hope all goes well for you.
Thank you
Had my first ones in Jan and Feb. My bp dropped a little in the day but came up again during the treatment. Other than that took it easy for a couple of days. Job done. Why are you worried about this things? They wouldn’t be giving it to you if they were worried. It’s designed to ease pain; not give it you. Enjoy the lie down.
Thank you
It is advised if you are on BP meds that you don’t take it on infusion day…but check with you medics first.,
I've never been told that, guess every place is different.
No it,s a clinical decision….ask your rheumy team to check with the nurses who administer the infusion.
I'm guessing my risks of not taking my BP meds outweighs anything else.
Do check with your doctors ….I take my BP Meds at night….so I can keep to my regime. But as a Rtx infusion can lower your BP you need to get professional advice. At my clinic they always ask if those of us who take BP meds have missed their dose that morning. .
I'm just waiting for my dates to come through to start RTX. I'm starting off hopeful that this will be the one. When I see the consultant, he looks at the bloods but he's more interested in looking at my actual joints and asking me how I feel. If they're putting you on RTX they must think you need it so I wouldn't be too concerned about future blood test results. Good luck, hope all goes well for you 🍀
Had mine in December/ Jan I was apprehensive but nothing to worry about , I walked out feeling so good ( no pain at all) they give you steroid and antihistamine, as others have mentioned first one is longest and they check temp/ blood pressure every 30 mins .Take magazine/ books to occupy yourself. I have found it has helped a lot .
After my first 2 infusions of rtx my inflammatory markers finally got back into a normal range. It took about 12 weeks though. But the way I knew it was working was how I felt. My joints all improved (could make a fist, unscrew a bottle etc ). What really surprised me was the pain and swelling in my ankles and shoulder markedly improved. The ankles had been diagnosed as OA and the ortho pod was talking about replacement. It seems that the swelling was RA so that was a bonus.
Thus I would hope that you would know of improvement in how you feel (reduction in joint swelling and pain and increased movement) rather than looking at the blood markers. I am not sure how they will monitor the respiratory signs though.
Good luck and I hope the rtx work well for you.
My infusions are yearly. That's how mine started. They help me for about 9 or 10 months then the pain comes back. Follow your rheumatology Dr's advise but it's a trial and error thing. If your are feeling pain again then get in touch with rheumatology.
Glad you have your start dates...Your chest pain and breathlessness should improve. Mine did, within 3 weeks I noticed a huge difference, maybe that was because of how awful I felt.
If under respiratory they'll get a CT done to check how your lungs are doing, your chest pain should also dull down, obviously it's not a quick relief, give it some time to work.
During mine, had mine last week, I sleep because the pre-meds make me so sleepy. I have a lower dose of steroid as that shoots my blood sugars up.
Always take snacks, a book if you read and your charger.
Also, my inflammation is now under 1, huge difference from 162, still have it every 6 months as mine wears off at month 5.
And I even had a flare up at the weekend 🙃
Praying this gives you comfort.
Good luck x
This is a really helpful reply to Wendy! 👏 It can be an anxious time starting a new medication and asking people why they are worried is not helpful, if they weren’t worried they wouldn’t be posting!
Im back on Ritux after a 2 year break and I hope it gives me the same response as before…also the time the infusion takes can be different for everyone , I have mine slowly so 5 hours is not usual for me , not on the 1st anyway…again, everyone is different!
Wendy…if you pop Rituximab intro the search posts box you will find many posts about it, Good Luck and wishing you all the very best with your infusions. X
Thank you, I've spoken to Wendy about this before and I'm happy to read that she's starting RTX.My infusions take about 3/4 hours now, it's always pushed at the quicker rate as I tolerate it well.
I wish you well and good luck x
Brilliant thanks for sharing xx
Thankyou everyone for all your kind words and support. I’m hoping my breathing gets easier and pain in my spine and joints ease a bit but I do have OA also . I just want the information out of my lungs and hopefully the fluid might eventually go, fingers crossed my lung will inflate properly again and I can then find out where I am with the damage. I’ll obviously have to stay on RTX or it will all come back. I just want something that will help.
Take care
Wendy xx
Hi Wendy,
I've just re-started RTX after a break of five years. I was on it for a few years prior to the pandemic. I have seronegative RA, but while the inflammation doesn't show in blood tests the consultant regularly examined my joints. I also used to keep a diary of pain/swelling etc. I'll need to start doing that again.
I hope it works for you!
Another Wendy x
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