Ritiximab?: Anyone on this?any side effects? - Vasculitis UK

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Ritiximab?

asilanna profile image
22 Replies

Anyone on this?any side effects?

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asilanna profile image
asilanna
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22 Replies
cookie61 profile image
cookie61

Hi, I had my second infusion of Rutiximab yesterday and so far so good and will see what the day brings but based on the first infusion I was ok, maybe a headache and felt a little heavy legged but my steroids make me feel like that sometimes and had no real signs of anything else. I did feel some minor improvement in my condition but not sure if it was the infusion or the large dose of steroid infusion I had first, but which ever it was most welcome as I have GPA. Most people will tell you it will be a long day and be prepared for that and just try and relax. When are you having your 1st. treatment?

Marcus1988 profile image
Marcus1988 in reply to cookie61

I also have Wegeners, I met a 'veteran' of the disease (diagnosed with it 10 years ago) who told me that Rituximab actualy takes up to one month to really take effect... I also have hadno side effects though

julsno profile image
julsno

I had this one month ago and as yet no side effects.

Pickzie profile image
Pickzie

Lots of posts on Rituximab- put into search to pull them up. My experience has been really positive. Good luck

Llinos profile image
Llinos

Just had my 4th infusion this year, no nasty side effects, just some abdominal discomfort and tiredness although my psoriasis has gone ballistic over the last 4 weeks!

asilanna profile image
asilanna in reply to Llinos

Try taking high dose vit d?

piglette profile image
piglette in reply to asilanna

I am not sure it is a good idea taking high dose vitamin D unless you have had your vit D level checked and it was found to be deficient.

asilanna profile image
asilanna in reply to piglette

Mines very low but lot research to back treatment of psoriasis and haven't had bout since taken vit d!helps with bones too if ur on pred which I am!

piglette profile image
piglette in reply to asilanna

asilana, You are right you should take vit D and calcium if you are on pred due to pred's side effects. I am also on pred and take it. However people should be careful of taking high dosages unless deficient.

in reply to asilanna

Do you have psoriasis asilanna?

I do and I've had rutiximab (18 months ago), which I was told may have made my symptoms worse. Personally, I'm not convinced and often wonder what others find.

Nikkibaby1988 profile image
Nikkibaby1988

I had a infusion of rituximab back in April and whilst the infusion itself went ok I seem to get really ill after it even with the steroids and then my liver started to fail luckily it regenerated itself I personally think it was down to the rituximab as I've never had any issues with my liver ever and I don't drink I'm only 26 x

Nadine99 profile image
Nadine99

My husband has had 2 lots of infusions, last Dec & this June, another due in Dec this year. No side effects except feeling a bit tired after a long day and it appears to have sent his WG into remission. Whooppeeee,

Good luck with yours

cambs13 profile image
cambs13

Have been on Rituximab infusions for just over a year go for MPA. No ill effects whatsoever. The pre infusion of Pred usually gives me a boost but sleepless night on that day.

Was diagnosed Jan 2013. Had 10 pulses of cyclophosphamide then Mycofenolate after a failed attempt to go on Azathioprine. Started Rituximab September 2014. Had no infection 2013 and 2014. This year although my bloods remain within normal limits, I have had multiple chest infections and a bout of UTI. This has left me more fatigued and loss of lung function. Is this disease progression or the change of maintenance meds?

asilanna profile image
asilanna in reply to cambs13

It's to stop flare up but having given up smoking my legs are healing super quick so we gonna hold it to see what happens!tbh I really want a break from meds as methotrexate made me feel diff person!wanna see if not smoking and eating healthy diet can do it! If I flare again my consultant says let's take it!

cambs13 profile image
cambs13

My post in reply has come up as cookie61. That is not me. I have no idea why this was picked up.

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to cambs13

not sure why either, would you like to reply to this and see what happens cambs13

cambs13 profile image
cambs13 in reply to Suzym2u

Hi its camb13 replying

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to cambs13

Thanks, I will run what happened in the Admin support group just to see if it has happened to anyone else.

Susan

CHARLIE49 profile image
CHARLIE49

I've had four infusions now over the past year and had no side-effects at all. I was like the Duracell bunny for a day or two afterwards, but that's the steroids they give you beforehand. The infusions have really helped me with my aches and pains, and my mood seems to have improved too!! Really pleased :)

michichgo profile image
michichgo

I've received a total of 8 infusions (2 rounds of infusions, 4 infusions each round) in the past year. I responded well and have achieved remission.

Prior to each infusion, the med team gave me Tylenol for relief of any minor discomforts and Benedryl for ease of allergic reactions that might occur.

The first two infusions caused itchiness and made me jittery. Both side effects were tolerable and ended with the infusion. Then I visited the Rituximab website and heeded their advice to hydrate well the day before an infusion. I experienced no further side effects during my 6 subsequent infusions.

I wish you good luck and good health!

Michele

monikagoyal profile image
monikagoyal

I had 4 infusions over the past year.feel good.Just tired and headache on the infusion day. Othrwise,I feel good after rituxan.

The anti histamine sent me to sleep and I dozed off a few times during the infusions. No obvious side effects, although I have suffered more with my psoriasis since, which was blamed on the rituximab. I had my two doses in March 14 and was told to taper my prednisolone to 5mg. By the time I was seen in the July I was told I was flaring. My steroids were put back up and I was put on azathioprine. At the time I was told rituximab could be used again but more recently they have said it is not an option for my future treatment due to my skin condition. I take methotrexate these days and still have psoriasis despite the fact the rituximab is probably out of my system by now - so who knows?

I hope you have a positive experience, good luck.