LUPUS UK
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First Cycle of Rituximab

Please bear with me as this is a long post!

Finally got my 1st infusion on the 4th December after 2 previous dates being cancelled because of shingles (my husband) and a tooth infection (mine).

I need not have worried so much beforehand because everything went well, apart from my temperature which went up half way through the infusion and they had to take me off for half an hour whilst they got it back down. The worst thing is having to sit still for 6.5 hours!

However the second one which was scheduled 2 weeks later on the 18th December wasn't carried out because when I got there and they took my sample from me, they said I had a water infection, so I was sent home! I had to take another 2 samples into my own GP which were sent off for testing and they both came back inconclusive. So off I went again on the 28th December for the 2nd infusion and again I was told that the sample I had taken with me showed I had a water infection of some kind and they were probably not going to let me have the treatment and I would be sent home again! So I had had 4 samples taken altogether, all of which were sent off for testing and all came back inconclusive but in the Rheumatology Infusion Department they said the samples were showing infection!

As you all know these auto immune diseases don't always make you feel great and I am afraid I wasn't happy. I don't live near the hospital, over 35 miles away and I just felt that I was being messed about and I said as much. After speaking to my consultant (who just happened to be on duty) they eventually decided to let me have the 2nd infusion to complete the first cycle.

I don't know if it has worked as yet and I am still on steroids, Hydroxychloroquine and Lefludomide.

Depending on who I am talking to I have been told varying timescales it would work within, 6/8 weeks, 12/14 weeks and the latest from the staff nurse in the infusion suite, 16/18 weeks, so it is just a waiting game - Fingers Crossed and everything else!

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Hello Bakbre,

No need to apologise, it's not a very long post, and it justifies itself anyway. That's a useful, and clear description of your first go on rituximab. Please keep us updated on how it goes x

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Hi everyone. I have been praying All Mighty God heal me and take away the Lupus, changed my diet and having acupuncture treatment. I have been going through extensive testing and on January 3rd, 2018, it has just been confirmed by 2 Rheumatologist that the test are negative for Lupus of any kind. I still need to take the Hydroxychloroquine (by my request because I know what works for me) and my doctors do not want me to take it because of the side effects specific to damaging the cornea of the eye and eventually causing blindness, but because this medication along with my normal dosage of Calcium ("Alive" products) are the only ones that can keep my severe muscle spasms (feels like I am having a seizure) at bay. Therefore, an extensive Eye exam once a year is mandatory. I have been dealing with my Bell's Palsy since July 31st and slowly healing and improving back to normal, that is why I haven't replied. I pray for all the healing and best for everyone.

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Hi Bakbre, it was an interesting post! I am supposed to be having 2 infusions , starting on Tuesday, it’s being done privately ( in Australia).

However being the silly season here, looks as if I’m not booked in because I have not had a phone call let alone a letter. Shall wait and see, I assume I passed the occult infection blood tests!

I wanted to ask how you feel after having them? I know you can’t answer for the long term effect, but were there any unwanted immediate side effects?

I also am on steroids, hydroxychloroquine and leflunamide, can I also ask the main reason for being prescribed ‘ritux’? Mine is for severe myosotis. I feel out of depth and would love to know more.

Thankyou!

Penelope-Mary

🐚🐚🐚🐚🐚

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Hi there Penelope-Mary

I was prescribed Ritux because for the last 3 years I have been on 4 different tablets, methotrexate, Azathioprine, Adalimumab and Leflunomide, none of which have worked. On Methotrexate I spend most of the day and night in the toilet with a bowl on my knee, even when they changed the tablets to an EpiPen. The other 3 didn't do anything at all. In all cases I had to have steroids and as you probably know it takes anything up to 6 months to know if it is going to work - which is a complete waste of time. As well as Rheumatoid Arthritis I have UCTD.

Luckily my consultant retired and I got a new one and she seems to listen. The old consultant just kept me on steroids and I had been on them for over 12 months when I had my first appointment with the new one. Anyway the upshot was she sent me for a battery of tests (some of which I had never had) and decided that I would be an ideal candidate for Ritux. That's how I came to be put on it.

I have had no side effects whatsoever, the only thing that I did get after the first infusion was so tired. My husband brought me home and I could hardly keep my eyes open. I had the best nights sleep I had had for a long time! It also happened again with the second infusion. Apart from that I was fine. The first one was on the 4th December and the second one was on the 28th December, so I suppose that I shouldn't expect to feel any relief yet but it is difficult to be patient. I am still taking the steroids but I am going to be reducing them slowly over the next 6 months so I am hopeful it is going to work. I spoke to the other patients who were having infusions at the same time as me and it seemed to be a 50/50 split as to whether it worked or not. Some said it was marvellous and others said it hadn't really worked.

Anyway I am trying to think positive and I have decided that it is going to work for me!

I hope you get your infusion sorted out very soon and I will keep my fingerts crossed for you. In the meantime I would like to wish you a Very Happy (and very Healthy) New Year.

Trish

PS - Whereabouts do you live in Australia? - I only ask because we love the place and have been on holiday there 3 times now.

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Thank you so much for replying Trish and for telling me more about your situation. You have been on quite a journey and I love your attitude.... it’s not easy, what am I saying! It’s damn hard!

Fingers double crossed 🤞🏼 with the new consultant and this drug, that this year will be the best you’ve had, at least in the last 3 years.

I’m curious, is the Ritux aimed at treating the RA alone or does the 👩🏼‍⚕️hope to alleviate the UCTD s&s? I have lupus arthritis ~’rhupus’ 🤨.

Do keep us posted as to how you are feeling and of the effectiveness of the Ritux.

We live in Melbourne, I had to retire when I was diagnosed (15 years ago) and I hide away in Mount Martha by the sea 🏖. We have a town house 🏡 and I allow my husband 😘 to relax down here on the weekends 😅.

It’s forecast 42 🔥degrees today !

All the best

Penelope-Mary 🤗

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Hi Bakbre. I have also had my first infusion in December. Six weeks ago to be exact. I am reducing steroids from 15mg and am now down to 9mg daily. I have not felt any relief from rituximab yet. I wonder is it because my body is adjusting to reduction in steroids. Also my mum passed away late on Xmas eve and that also took its toll. Maybe we just need patience. Hopefully we will soon see some relief. I will follow your post and see how you get on. Happy New year and good luck.

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