Apprehensive about Rituximab

[suffolkgirl]

Well I'm now on course to get Rituximab, since Azathioprine didn't suit me. Just waiting for a date for my first infusion. However, I'm a bit apprehensive in view of the mixed reactions to it. Hope it works for me!

[miss-scarlett]

Hi I had my first infusion last thursday. I felt weak and my face and throat swelled up. They stopped the treatment and gave me a shot of steroids and anti histamines via the drip. They said that it is a normal first time reaction as your body is responding to it depleting the b cells. Like yourself I was worried but I didn't feek sick like I did with the cyclo.

Good luck hope you will be ok.

Anita

[suffolkgirl in reply to miss-scarlett]

That's whyI'm concerned, but I didn't have sickness with cyclo, although I took anti-sickness tablets before and after each infusion.

[miss-scarlett]

Friday I felt ok and Saturday and Sunday I had headache. It is too soon for me to say it is working as the doctor told me it will take three months before it starts to work. Yesterday and today I feel ok. So apart from the infusion itself I would prefer this to cyclo.

I think what makes it worse is the length of time it takes and I think that is why it makes people feel weak and run down as yiur blood pressure changes.

I know it is easier said than done but try not to worry. I was constantly feeling sick and run down with cyclo. So if you didn't feel sick with he cyclo then hopefully you might not be too bad with this.

[Doghouse]

Hi, I'm also apprehensive of starting rituximab, i was diagnosed with GPA anca positive in December. I have just come to the end of my cyclo treatment 10 infusions unfortunately it hasn't worked as well hoped , while on cyclo I was lucky had no side effects .

[pwc51]

I recently had my second course of RTX, following my second flare. This was given after cyclo failed. My experience is that I felt almost nothing on both occasions. It seemed to work for about 2 years before the maintenance medication let go.

[Mooka]

Hi At Addenbrookes, where I think you will be having your infusion, they give you two paracetamol, antihistamine and steroid before they start the infusion. They start it very slowly and monitor you very carefully to make sure you are not having a reaction. The subsequent ones go in a bit quicker. Personally the antihistamine makes me quite sleepy and so I doze throughout. I had my third infusion last week, I have a sore throat and headache, but already have much more energy than I did before. So much so that I am having trouble sleeping again and am seriously considering dropping my steroids 1 mg. I would have rituximab over cyclo any day.

I hope this helps and look forward to hearing how you get on.

Jackie

[Essex-jill]

Hi. I have Rituximab at Addenbrookes every six months and again would rather have that then Cyclo. The staff at Addenbrookes monitor you very very closely and are excellent in the regime they follow to ensure its all given safely.

The ' cocktail ' of drugs given per infusion helps minimize any adverse effects. I have been having it evey six months for at least the last five years and call it my ' wonder drug ' I feel headachy and very tired for a week but within a month I begin to feel so much better.

I don't know how I would cope without it. I really hope it works for you as well as it does for me. Goodluck.

Jill xx

[quinnster]

ive had 2 infusions ,and both went well,was told I would have them every 6 months,and how it was a wonder drug

however once 6 months arrived and I asked for another infusion,the hospital started making excuses,saying it was unproven and they didn't want to give it out too much ,as they believed giving it out too much,and could cause bad reactions

also I believe there is a lot of research going on into the effects of rituximab and progressive multifocal leukeoncephalopathy

[Balderick in reply to quinnster]

My biggest fear is PMR but I feel there is no choice and it’s a catch 22 type of thing. Take it and have the chance of some decent life or don’t and resign yourself to whatever comes.

For me, my only real and noticeable side effect is itching ( pruritis I’m told it’s called) but no other really noticeable side effects. Also this is the longest period that I’ve gone without and episode of fevers or blood coughing and absolutely no problems with aspiration ( liquid going into my lungs from the gut).

My own opinion is go for it. Yes, I am very scared of PML but it’s a risk I’m now willing to take as I prefer quality of life over quantity.

Best of luck

[BronteM]

My rituximab infusions have been easier than the cyclo ones that I had. Cyclo gave me horrible side effects, so I was switched to rituximab, and have been fine. The main problem with the rituximab was that the first infusion took so long! The nurse monitored my blood pressure and increased/decreased the rate of the drip depending on my reactions. So it was about seven hours - but the antihistamine made me sleepy and I slept through a lot, then read or listened to music. The second infusion took about four and a half hours, and I slept through a lot of that too.

It has taken longer for the rituximab to take effect, though. Three months is about right, while the cyclo effect was noticeable within days. But the actual infusions were boring, rather than something to be apprehensive about! Good luck, I hope it goes well.

[tintinrob]

Hi Suffolkgirl,

I had my first two rituximab infusions recently - the last one just over 3 weeks ago.

No problems at all, just slight headache the day or two after :-); just waiting for the full benefits to kick in.

Cyclophosphamide might work quicker but it made me feel terrible - kidneys stopped producing urine for 15 hours or so after each of the 6 doses so I came to dread it, and I developed neuropathy in my feet, hands and finally my R arm where the cannula was put in for the drip.

Azathioprine started making me ill - some sort of black-out a few hours after each dose, so had to stop it.

Cellcept (mycophenolate sodium) made me very breathless, so had to stop it.

Methotrexate seemed to work great for a couple of weeks, then I found my leg neuropathy much worse, almost couldn't walk, then became even more breathless and still am

So - in your shoes I'd say 'yes' to the Rituximab.

best wishes

Rob

[suffolkgirl]

Thanks for all the comments so far! It's interesting to hear your reactions and on the whole most of you seem happy with Rituximab, so I'm encouraged by that. Just have to wait for a slot, as I'm told PSSU is very busy. Still hoping I may get there before next clinic on 12th July.

[suffolkgirl]

I now have two infusion dates for Rituximab, on 9th and 23rd July. So not long now!

[Balderick]

Hi, I know this is an old post but I only use the site in bursts as I find I suffer anxiety if I allow myself to talk about the disease too much or use google too much. See my reply above to quinnster as it was meant for you. Sorry as I haven’t visited here in a good while.

Please do give an update on how it went and how you are now as I am around 2 years into the Rituximab so would like to know how you have found it, since you would have been on it longer than me so will have more experience to give your opinion on. Thanks in advance

[suffolkgirl in reply to Balderick]

Is it really 5 years since my first Rituximab? I thought it was at least 3! I had my 2 years worth, and have had no more since. I'm not currently on Pred either, but I believe I had one flare which was not recognised officially as I was on Pred for gout at the time. Thankfully no major problems at present.

[Balderick in reply to suffolkgirl]

That is superb news. I am so pleased for you & it also gives me hope. Thanks for the reply. Really Wonderful news