Mr Jeremy Jane

[chinpolo]

Hello I have just received my second infusion of rutuximab and was wondering if anybody could give me any feedback on their experiences with it

Mr Jeremy Jane

[AgedCrone]

Been on it since 2016…….great success…I am down to a single infusion every 6/7 months.I had no side effects apart from feeling a bit tired the day after infusion but nothing major.

I hope it is as successful for you.

[chinpolo in reply to AgedCrone]

Thank you for reply. I do hope I will have the success which you have. How do manage with the immunity depletion it creates and the risk of covid. Also have you been offered an additional vaccine due to medication. Regards

[AgedCrone in reply to chinpolo]

I have been fortunate & have not had any issues apart from nasty after effects to the first 2 AZ Covid 19 vaccinations,,,..but I had Pfizer as my third primary & didn’t even have a sore arm….but I continue to be very careful….as tests show I have not developed anti bodies.But life goes on…& I am due to have a fourth jab soon.The only slight problem I have is timing the infusions around vaccinations ..….previously with the annual Influenza vaccine…& now the CV19…so it would be good if they could combine the two.

But just spending one day every six months having a Rtx infusion is by far the best successful treatment I have had.

[chinpolo in reply to AgedCrone]

Thank you. I wear a mask whenever in shops and do not go into crowded situations. When we childcare after school I always make sure as much as possible not to have face to face contact with the children

[AgedCrone in reply to chinpolo]

You seem to be doing all the right things…& enjoying life.I think it’s very important to be careful, but to lead as normal a life as we can manage.

Covid is here for the long term…& as far as I am concerned…..so am

I!

[chinpolo in reply to AgedCrone]

One of my worries are also reading about the heart problems re infusion. I have heart problems and had a double bypass and stent fitted just over 4 years ago. Are you monitored periodically for kidney and heart disease after treatment

[chinpolo in reply to chinpolo]

Do you have rutuximab or the bio similar truxima

[AgedCrone in reply to chinpolo]

I am on Rituximab…..there was no Bio similar when I started on a Biologic..& when they started to come in to use my rheumatologist decided I should stay on the original.I think he was fed up with switching my drugs as I reacted badly to one after another.

[chinpolo in reply to chinpolo]

Funny enough I was going to ask you the same question. I have had truxima

[AgedCrone in reply to chinpolo]

No I just have the regular blood tests…like all Rtx patients I am monitored every 15/30 minutes during the actual infusion but RA is my only health condition….my heart,lungs,kidneys & liver are all normal for my age.Presumably your rheumatologist knows about your cardiac condition & he would only prescribe a suitable drug after speaking with your cardiologist.

I don’t know if Rtx is suitable if you have a heart condition,

[sunnyweek]

So far I've found retuximab very good and hope to for the future. I've had 9 cycles now. Am continuing being careful and am very keen to get my 4th covid vaccine but not worth it til end of May when it will be 5 months from my last infusion. I have them approx once a year now in the early days it was 7-8 months between cycles. I have the biosimilar now Truxima. Hope it works well for you.

[chinpolo in reply to sunnyweek]

Thank you for response. I hope I also get a good outcome from infusions. Are you monitored by your healthcare providers for kidney function etc after the treatment

[sunnyweek in reply to chinpolo]

I have full blood count, kidneys, liver and crp 3 months after infusions and see the rheumatologist with these results to see if it has worked. The same tests 6 months later. After that I ring them when I feel I'm flaring to hopefully set a further date for the next round.

[bpeal1]

I’ve been in Rituximab for about 7 years. It’s the best treatment I’ve had. I have two lots (two weeks apart) every six months. I know others have successfully reduced it to one lot each round and pushing treatments further apart. Unfortunately for me that didn’t work.

[Lolabridge]

I was on Rituximab and found it excellent. It was the first drug that made me feel human again!

My consultant was concerned my immune system was depleted and wanted me to try Imraldi instead but after 12 weeks it has not worked for me so I’m going back on Rituximab. In fact I have had two biosimilars - first Truxima and then Rixathon and both worked equally well.

As I was immune suppressed when I had my first two Covid vaccinations I have had a third primary and a booster. I’ve booked my spring booster too (which will be my 5th).

But if you have only just started Rituximab I don’t know whether you qualify for extra jabs. It will depend on what meds and any underlying conditions you had when you were given your first two doses. Check with your Rheumatologist.

[chinpolo in reply to Lolabridge]

Thank you for reply. Fingers crossed it works for me also. Do you have any other health conditions as I have had heart attack with subsequent double bypass and stent fitted. I am a little concerned as it says rutuximab can cause heart problems but my rheumatologist has all my medical records so must think it is safe

[Lolabridge in reply to chinpolo]

I’ve not been diagnosed with heart problems although I did have a pulmonary embolism a while ago and now take Apixaban. No one knows why I got it as I had not had a DVT. Of course RA puts us at greater risk of cardiovascular problems anyway.

If your Rheumatologist has recommended Rituximab for you I’m sure he will have first considered your other health conditions.

Getting your RA under proper control is what matters. I’m really looking forward to having Rituximab and feeling well again so I can become more active.

I hope it works well for you.

[chinpolo]

Did you have the pulmonary embolism some while after having rutuximab or truxima? You would hope they read health conditions. I have tried various drugs but either affect my lungs or have ltd use due to me having melanoma a few years ago so I think this was possibly my only option now