Rituximab causing itchy skin??: Hi guys, I'm new to... - NRAS

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Rituximab causing itchy skin??

Elpenor57 profile image
27 Replies

Hi guys, I'm new to this community, been a member of NRAS for years; I've been on Rituximab and now the bio-similar 'Truxima' for about 5 years total. Very lucky, doing brilliantly on it but I think it is causing itchy skin that develops into small spots - but only on my arms, legs and tummy - weird eh? Spoken to my GP, he's unsure of the cause, I will mention to my Rheum consultant next time, found a few refs to a possible side effect researching on line. Has anyone experienced this too, gets worse in the summer - avoiding strong sun and heat? No infusion injection site reaction - lucky me! Thanks.

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Elpenor57
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AgedCrone profile image
AgedCrone

How long ago did you switch to Truxima? If the spots only appeared then, try to speak to your rheumy nurse or the Rheumatology Pharmacist...I did that & stayed on the original Rtx.

Elpenor57 profile image
Elpenor57 in reply toAgedCrone

Hi AgedCrone, thank you! I have wondered about that as it seemed to coincide roughly - about three years ago. Everyone says the biosimilar is so 'similar' that it shouldn't make a difference but I have my suspicions - I'll do as you suggest!

weathervane profile image
weathervane in reply toElpenor57

I have been on biosimilar for last 2 infusions, i have had a pinpoint rash on legs a few times . I started using Aveeno shower cream and it hasn’t happened since , May just be a coincidence though!

Elpenor57 profile image
Elpenor57 in reply toweathervane

Thanks, I've been avoiding harsh soaps and shampoos for a while - seems to reduce irritation, i'm using Aveeno moisturiser, helps a bit I think.

AgedCrone profile image
AgedCrone in reply toweathervane

Did you swap from a Biologic? It seems if you go straight on a Biosimilar you do well......it might be the switching ...even though only one tiny molecule is different ...that causes rashes etc?

weathervane profile image
weathervane in reply toAgedCrone

It was rituximab, it was switched to a biosimilar , I wasn’t really given a choice, i was told as the drip was put up !! I don’t know if this was the cause of the rash as things have been ok since I started using Aveeno shower cream. Have you had any problems like this?

AgedCrone profile image
AgedCrone in reply toweathervane

No I didn’t switch... My hospital, wrote & told all Rtx Mabthera patients the decision had been made to switch to Truxima,& said if we wanted to discuss it to speak to the Rheumatology pharmacist.

I spoke to her..explained my history of bad side effects,& she agreed i could stay on Mabthera....it appears the cost differential is now not so vast as Mabthera has come down in price.

I find Aloe Vera lotion calms down any rash I have....but I get rashes all the time for no apparent reason......after seeing my GP, Rheumy & Dermatologist & having had 4 biopsies...... last one was put down to being a Post Viral Rash after flu.....Go Figure!

weathervane profile image
weathervane in reply toAgedCrone

Very interesting ! I was a bit taken a back when i was changed without any consolation, interesting you got a letter. I think I will have a chat with the rheumy. The rashes i had on my legs and arms were very itchy , i am prone to get skin rashes as well so i just treated it myself. The rash on my arms may have been sun sensitivity.

My last infusion was delayed because of a backlog by 4 months so i was so relieved when I got the infusion I didn’t question it , i was also flaring so i was out of sorts . Thank you for that information, keep well xxx

Elpenor57 profile image
Elpenor57 in reply toweathervane

This is interesting too, its arms and legs where I'm most affected - possibly aggravated by the sun, but I don't get it on my face or back of my neck for example. Seems we do have a bit of a pattern here. Really useful discussion all, thanks!

weathervane profile image
weathervane in reply toElpenor57

Don’t get it on my face , but sometimes on top of my chest, more like prickly heat there!

AgedCrone profile image
AgedCrone in reply toElpenor57

You may have a good chance as the price of Rtx has been reduced...presumably because they were losing out to Truxima.

Good Luck.

weathervane profile image
weathervane in reply toAgedCrone

Will have to check it out , thanks , best wishes x

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

Agree and I have stayed on Rtx. Elpenor, If the spots are recent then could be Truxima. Are they sun related? I used to get urticaria solaris when on Suplhasalzine for years. Rheumy said it wasn't a drug that did this but there I was .. proof it was so! As soon as I stopped Sulpha I could go outside again and not have hundreds of itchy spots. I couldn't even sit near sunlight in a window indrectly from the sun's rays. I was bright red even if not spotty and itchy. Not even Factor 50 Sunsense (like lard!!) could stop the rash. Good luck!

AgedCrone profile image
AgedCrone in reply toNeonkittyUK

I am beginning to wonder if Rtx somehow acts as Mega High factor sun protection cream.

Ever since I have had Rtx infusions I hardly tan at all.

All my life I only needed to pass in front of the sun & I had a lovely suntan.

These days I can spend weeks in sunny climes..admittedly not sunbathing per se...but walking around outside I hardly tan at all.

Has anybody else found this?

It’s costing me a fortune in fake tanning lotion!!!

Elpenor57 profile image
Elpenor57 in reply toAgedCrone

Hi AgedCrone - yes I have noticed this too, I'm fairly fair skinned but used to tan a bit, now I hardly tan at all! I avoid the sun now (mostly) to try to stop the itching. I'll mention this to Rheumy as well, next consultation.

AgedCrone profile image
AgedCrone in reply toElpenor57

I’m skin type 3 which is sort of Olivey & used to tan easily...but as I say since being on Rtx that doesn’t happen.

My Dermatologist has no idea if it’s the Rtx.

Luckily there are very good fake tans available these days without that horrid smell & you don’t end up looking like an Orange Prune!

Well....I hope I don’t!

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

That's not the case for me AC as I have had a couple of golden tans last year. Safely and more slowly with Factor 50. I user Ambre Solaire clear spray/spritz. I never feel any soreness or burn so it is protecting me, but I do go golden. Will take a few weeks though to build as I don't go for intense sitting in the sun. Never the face. i don't want wrinkles ... kept them away so far!! Just walking around in a camisole and shorts seems to bring colour to me. Or in the garden pottering. I am pale skinned normally. Strangely, since the Rtx my skin quality has improved so much due to less dryness from RA.

AgedCrone profile image
AgedCrone in reply toNeonkittyUK

I was like that....now I do tan....but nothing like as dark or fast as I used to.

I’m too old to bother about getting wrinkles...luckily not too many yet.....but I can spend all day in the sun & just go cream....but as I say fake tan is excellent these days....my Dermatologist is even recommending it to his patients!

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

I have a couple of nice fake tans I used on my legs as they can still be a little paler than the rest of me. Elemis Total Glow body lotion is lovely. I find it hard to rub in gels and so the more subtle body lotions work best for me. Ideal Soleil by Vichy is a nice one too. For face and body and for sensitive skin and paraben free.

AgedCrone profile image
AgedCrone in reply toNeonkittyUK

I use Decléor....it’s fast, lasts well & doesn’t smell awful!

And Of course it doesn't damage skin like the real thing!

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

Yes another good quality one.

Elpenor57 profile image
Elpenor57 in reply toNeonkittyUK

Hi Neonkitty, thanks, very interesting! Yes seems to be aggravated, if not caused by sunshine in the summer, I think it does tie in with the switch to Truxima, I'll discuss with Rheumy and try to switch back to Ritux to test our theory! I was on Sulpha years ago, no problem then, also been on Leflunomide for 10 years so I don't think its that either.

NeonkittyUK profile image
NeonkittyUK in reply toElpenor57

Hi Elpenor, I hope you can swtich back to Rtx and sorry you have had to make the switch to the biosimilar and suffer the itching. Hard to know for sure when a biosimilar is a newer med and hasn't got a history of what side effects people have reported. x

Quee profile image
Quee

I am not familiar with that medication. I take sulfasalazine now after being on hydroquinone which really didn't agree with me. Forreal with symptoms from bowels impacting an other things. I go to my RA doctor next month. He has to change something. Pray it works out for you.

Callabag64 profile image
Callabag64

Hi there, had my first infusion end of April, and over the last 2 weeks have begun to itch badly, never suffered with dandruff but my head is itching really badly along with my back ,my skin is so dry and all in all my skin feels like it is crawling. Like you I have read on Rituximab info sheet about skin rashes, but I have no rash. Have also been suffering badly with dry sore eyes since March.

Elpenor57 profile image
Elpenor57 in reply toCallabag64

Hi, yes, similar thing happened to me a few years ago on Certolizimab Pegol (Cimzia) and Etanercept, switched to Mabthera (Rituximab) and was fine, now itching with Truxima (the biosimilar) - going to discuss with Rheum consultant in September. Luckily mine is getting a bit better now. Def talk to your GP/ Rheum C. Best wishes.

Callabag64 profile image
Callabag64

Thank you for your comments, been told by rheumatoid nurse to contact gp, who, in turn I know will tell me to contact rheumatology department!,,,, get that all the time

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