Infusion

[Ellieellie]

Ok so I had my Rituximab infusion and had problems with heart rate. Was not given the second part due to elevate blood pressure and got told to see my Dr. Saw Dr who put me on Ramapril. When I asked about side effects he only mentioned a dry cough. Have only been on it for 6 days and suffering nausea, feeling light headed, no appetite and other symptoms. Rang Drs and have been told to stop taking it.

Rang my rheumatologist dept and they asked info wanted 2nd infusion. I said considering what had happened maybe they should speak to the consultant. I said I was not happy to have it the reaction I had but that I needed something as I was struggling with walking as my legs feel heavy.

They said They will calle back and let me know that they can offer me until I see the Consultant next month. I would like them to offer an alternative to the rituximab. So sitting here feeling really rough and Very sorry for myself.

[weathervane]

Hi Ellie , sorry you are feeling so rough ☹️. When i had first infusion i had terrible gastritis, i felt tired and achy and also had dizziness. Omeprazole was increased and i was advised to take stemetil for the dizziness. This helped , they have also slowed the infusion which has really helped. It does take about 12 weeks to see the real difference but it has changed my life as i can function much better. I hope things go better with your next infusion and you start to feel better soon xx

[Ellieellie in reply to weathervane]

This was my third round of the infusion. They had increased the speed apparently due to new protocols from the manufacturer. I was ok previously and the infusion gave me relief. So will just have to wait see where I go next.

[weathervane in reply to Ellieellie]

They were going to speed up mine the last time but i asked the doctor to keep it slow and it has been fine . I have read quite a few posts where this has been an issue and the faster infusion has been hard to tolerate so i am still going to ask for it to be done slowly. Good luck with all xx

[AgedCrone in reply to Ellieellie]

I too felt "off" after a faster RTX infusion.....which in fact I had asked for& my rheumy had sanctioned .......but once it was put back to 6.5/7hrs I was fine.

I know it's a long time, but I have felt so much better on RTX I'm willing to sit there all day......I'm due an infusion soon,& despite having seen rheumy a couple of weeks ago & him saying I "might" be able to lengthen the time between infusions.....my ankles & wrists are now playing up & I'm counting the days until my next treatment.

Is there any chance of seeing your rheumy sooner....if you have been OK with the slower infusions twice before, it seems like throwing the baby out with the bath water to change meds because a faster infusion caused problems. Luckily my rheumy always calls if I have any problems with infusions & passes instructions to the. Rheumy nurses.

[juneann]

Same here...fine on Rituximab until speed increased and within five minutes a full on head cold, it was very strange. Slowed it down again and within ten minutes the head cold cleared. Bit concerning. Better to get comfy with a good book/film for eight hours and request slow. I turn up with my own Whittard's pint mug, android tablet, extension lead, headphones...I set myself up for the day and take up most of the electrical sockets. Try and grab a foot stool as soon as you sit down. Hope all goes well next time.

[AgedCrone in reply to juneann]

Me too......when I had a 5.5hr infusion I ended up with a chest infection & had to take anti biotics. ....medics insisted it was not the RTX but I have never had

a chest infection before or since.......

The receptionists laugh as I toddle in with my blanket under my arm & my iPad,Kindle,magazines & in winter a flask of hot soup!

Luckily the unit I go to has lovely comfy chair/beds, so usually after the first hour I doze most of the time. & all my goodies go unused!

[juneann]

Agedcrone. it's alk about our home comforts, nothing wrong in pampering ourselves. we deserve it. Take care. X

[Hobbits]

Have them slow down the infusion! This is very common when they try to rush you through. Anyone that has not had infusions for a year should be done slowly

If your very stable after a year of infusions, you may be a candidate to fast track your infusions.

My BioAdvance coordinator who is a liaison between the pharmacutical company and my medical care team talked to me about this.

Also after being stable for a year, I can then get infusions done at home and not a clinic if I want.

[epicdee]

Did this happen while having the infusion?? my blood pressure drops really low then goes extremely high through the infusion but maybe give it a another try, they always make me feel rubbish after i've had them for few days.was you giving steroid and anti-histimine before the infusion ??. rituximab didn't work at first for me but now i feel better than i have in a decade.

Dawn

[Ellieellie in reply to epicdee]

Yes I got the tablets before the infusion. I didn't feel too bad until the end and that's when it all kicked off. The hospital want me to see the Consultant but that isn't until next month. They have a prescription of oral steroids for me. I have had a severe reaction to the Ramapril drug for blood pressure. Been told to stop it immediately which I did yesterday but feeling very poorly.x

[annie330]

Hi Ellie sorry for a late reply, I have issues when I have the Ritux I start to feel really odd like I'm going to pass out and rally tired, which is due to blood presuure droppong really low. I haven;t had these symptons for some time now as when I got them they got me into bed, stopped the infusion and gave me an intravenous anti-histame. For the last few years they always give me the IV anti-hisame stuff first and the affects are less (I still get them a bit but no where near on the passing out level)

Ritux has seeemd to work for me, the first thing they gave me was cylcophosamiade (there first choice treatment) but it didn't help symptoms and it made me feel really bad, they moved me pretty quickly to ritux and I am just waiting for date for my ninth treatment.

I think it can be hard as people react differently with some having no problems and others having different issues and you have to go with their advice whilst getting your own research and advice.

The anti-histamine before really has helped me (fingers crossed I don't jinx it) and I normally just feel a bit jaded but I have still managed to get to work next day, and my headaches get worse for a few weeks then there are loads better so I take the extra pain for a bit waiting until they lighten up.

I don't know if you take steriods, I take a lose dose 5mg daily but I am told to double it for two weeks before the ritux until two weeks after the secnd infusion.

You have said that you started rampiril and have been feeling bad, the things you have said are common side affects and your doctor shoukd be able to offer you an alternative to that.

Hope things get sorted for you and that you get a treatment plan which works.

Take care.

[Ellieellie in reply to annie330]

Thank you. Have come off the Ramapril due to sever side effects. Hosp has put me on Predisolne until I see Consultant next month. Now on top of everything I have a bad back and have had spasms so having an MIR scan tomorrow. Just seems to have been one thing after another this year and I am so done with it all. On saying that I am still here and will keep going. Xx