Does anyone have any advice on taking Rituximab?

[milliewin]

I am about to change my immuno-supression to Rituximab and have been reading the quite serious side- effects, does anyone taking this drug have any advice or experience of this drug? Also having lost all my hair with Cyclophos, does this happen with Rituximab?

[Hidden]

I was first given Rituximab 5 years ago when cyclophosamide failed to have any effect on me or my WG. In short, it was my life saver. Since completing the Addenbrookes-designed regime (every six months over two years) I now receive an annual maintenance dose and have remained virtually flare free.

I'm not sure what you've read where about side effects but from personal experience, and from that of many others I know, this drug rarely produces any adverse reaction. It is non-toxic, non-destructive (except to B-cells) and you will certainly not lose your hair because of it. Assuming you tolerate it (and admittedly one or two people don't for unknown reasons) the worst you are likely to experience is fatigue and possibly boredom from the 6 hour infusion

Studies to date have shown that it is no more effective than cyclophosamide in inducing remission but has the advantage of being safe and flare rates appear to significantly reduced.

All you need to be aware of is that your Ig levels are okay (especially IgG) and that it is administered via the appropriate protocol which means the dose will be incrementally increased during the session. It is normal to receive a hydrocortisone shot before and a small bag of IV saline before and after. The Addenbrookes regime is an approximate dose of 1 gram which is repeated and given a fortnight after then every 6 months as described above. Gone are the days of administering it then 'waiting and seeing' so make sure your consultant is up to speed. If they have any concerns then I suggest you get them to contact David Jayne et al at the the Vasculitis Clinic at Addenbrookes who wuill be only too happy to advise.

I hope this reassures your concerns and that others here will also be able to report similar experiences and knowledge to mine.

Healthy wishes.

Martin

[milliewin]

yes thanks that is very reassuring and I await my appointment less anxious now thanks

Sarah

[anthony01]

Lucky to be offered it, as my doctor/hospital suggested it but the hospital can not afford it (about £4000 I am told) and a special application has to take place. So instead a heavy dose and concoction of meds I will start.

[Hidden in reply to anthony01]

The current cost of a 1 gram dose of Rituximab (excluding IV administration etc) to hospitals is around £1600. So, a full two year regime = 6 infusions = £9600.

Cyclophosphamide costs about £10 per dose so it's not hard to see why PCTs take a stance but the simple maths above don't take into account the patient experience or reduced chance of flaring (i.e. less chance of having to be hospitalised at £X hundred per night).

The problem is that none of us here need convincing that Rituximab should be the first line, gold standard treatment but let's hope that the efforts of V-UK and others will convince NICE to approve a specific licence.

Anthony - I suggest you challenge their decision, particularly if other treatments have failed. Get your local MP and press involved and anyone who can help fight the cause.

Healthy wishes.

Martin

[Bill1959]

Hi I had 2 Ritixemab infusions 2months ago . Have had no side affects what so ever. But will give you a wee tip. When you go in for your infusion take plenty reading with you as the first lasted about 7 hours and 2nd about 6hours. So need plenty reading as is a long day . And good luck .

[DevonLottie]

Just to reiterate what the others have said, I've had 3 courses so far with no adverse side effects but, for the first time in 6 years, I'm taking less than 10mg of prednisolone to keep me stable ... it works! Also, as Anthony said, you are lucky to get it so easily, I had to go through a real rigmarole to get funding in Devon and it took a year before I got it! I understand the drug is more 'pin point' than cyclophosphomide and so is less harsh on the body. Good luck, and don't forget that book to read!

[JimL]

As others have said the only problem I had with RTX was the boredom of being connected to a machine for six hours. I not only took a good book and crossword puzzles but also used a portable DVD player with headphones, watching a god film helped pass the time.

For any men reading this, do NOT wear braces. Try going to the loo connected to a machine and remove your braces ............ Big mistake, which I did not make on my second visit.

Jim

[milliewin]

Hi thanks all and good tip about the books, dvd's, sounds like a fun day out and thanks Jim I wont wear braces!!!

[ken13]

I first had rutiximab in 2009 which helped fetch my vascullitis under control then had it again this summer once in july and again in august both times absolutely fine

[PoppyS]

Hi, I had my first dose of Ritux October last year and am now coming up to my 4th dose in November. I agree with all the others it is a very long day if you are lucky you may get a bed and be able to get some sleep. The only problem I had was between the first and second doses had a really bad headache and was advised to keep taking Paracetamol regularly which eventually worked. Also my legs and arms were a bit shaky. Have not had any problems since and am now down to 2.5 mg Steroids and the weight is also coming down which is a bonus. LOL

Sandy

[Jean9618]

I had no side effects. Have had three cycles over four years. The benefits are not immediate. It took a good six weeks before I felt any better. Take your ipad and try to sleep. It's a very long day.

[pwc51]

I had the two infusions a fortnight apart in March 2010. No adverse effects but the benefits were almost immediate - my rheumatologist could not believe it! I had the treatment after a flare and Cyclophosphamide would not touch it the second time round. On the whole things have been good since and I am now down to 2.5Mg of prednisolone. It would seem, as it stands at present, that I will only get a repeat dose if I flare (different from the current Addenbrookes routine).

[Balderick]

I just put my first post up about this as I’ve been given the green light to have this drug and reading the replies has calmed me down some. I sometimes dread reading the potential side effects on the internet and the PVL scared me witless.

Thanks to all