I had my second of the latest duo of Rituximab infusions on Tuesday, three days ago. No reactions at the time at all and nothing to report on the one two weeks ago or indeed any of the others I've had since 2014. Just some increased upper respiratory infections from time to time.
I can only think the reactions I've had are due to to the fact I ate two soya (Alpro) yoghurts earlier in the week (apparently soya makes you allergic if you are already allergic to peanuts, strawberries and shellfish .. two of which I never eat due to such severe allergies.)
I look like I am an extra in Hammer House of Horrors, although the eyelid puffiness has calmed a little since starting antihistamines prescribed by the GP yesterday afternoon and the tapioca pudding type hives and the rashes on my arms chest and tum have calmed a bit too but still not gone.
It's the eyes which are worrying me as I've never had a bag under my eye in my entire life. I have two puffy little under eye hives which haven't gone down and also eyelid swelling in general. There is some improvement since the photo was taken yesterday but I'm worried that it won't go.
I've been prescribed Chlorphenamine Maleate 4mgs, max of four daily and have a week's supply. Anyone else ever had an allergic hives reaction to soya products whilst on Rituximab? I was worried that Rituximab has caused this reaction but my rheumy nurse phoned me and said it isn't that as it's never happened before and would have done the first of the recent duo, and didn't! However, the GP I saw yesterday says that Rituximab heightens histamine and then the fact I've had these two soya yoghurts this week has exacerbated the histamine levels in my body triggering the attack. It started exactly 24 hours after my infusion. Reading about soya allergy, apparently it can take a few days to appear as hives and this is exactly the way I had a reaction to prawns (pre RA many years ago.)
Anyone else ever had similar re soya whilst on Rituximab?
Note to self ... read ALL meds leaflets before having pharmacy and NEVER touch soya products .. not that I usually do but the yoghurts looked very nice!
Sorry for the photo of my eyes .. I've never felt so hideous. I'm looking for my Raybans this weekend .. hide the eyes if they don't improve.
NK x
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Thank you darling. That's useful to know although sorry you had those too. Can't put make up on or use cleansers or moisturisers (which weren't the cause btw ... nothing new re products!) so just warm water. Putting cold compresses of water on my eyes. xxx
Thank you! xx. I'm relieved it isn't Rituximab going bonkers on me! How are founding with your latest med? Not sure what you are on at the mo but hope it's holding the RA back. xx
I'm on Tocizilumab TCZ infusions monthly and that with hydrochlorquine, leflonamide and only 2mg prednisolone a day I'm doing SO well!! Feel more like me! So happy.
Also losing weight. Off insulin and just on 1 diabetic tablet ! Wow and they just lowered my blood pressure tablet. !
That's soooo great! Yay! Only 2mg Pred is a fantastic achievement. Apart from the allergies and little tired post infusions, I'm feeling very fine and Rituximab has been the best thing for me ever. I'm on 15mgs sub cut Mtx but want to talk about lowering that soon. I have lost 8lbs since Christmas (and my trousers are falling down!) I have another stone to lose to return me to where I was pre Pred, but I'm doing great with exercise and watching what I eat, and sounds like you're doing similar. Great isn't it?! Happy too for you and all of us doing well .. and those in limbo at the mo .. it will get right for you. We promise. We are proof! Keep the faith ... as JBJ sang! xx
Thank you Nettac! I just heard from a veggie friend who says it is very common to be allergic to soya and as I read too ... about it being a top 8 allergy along with peanuts, strawberries and shellfish. x
Sorry to read about this NK I hope it improves for you soon. I eat quitea bit of soya products and I’m on Rituximab too so will be interested in following your post. I’ve had a quite lot of infections after my last cycle also including this one that has been hanging around since Christmas!! Not sure if it’s a coincidence or the Rituximab making me more prone o used to get a couple of sinus/water infections a year but they would go after a week or so..but these infections are being very stubborn! Hope your eyes improve soon 😊
Thank you 3LB! Sorry to hear of your infections too. I have had two water infections in-between the previous first and second infusions last year and then the year before. These were in summer and I get easily dehydrated. Sinuses are much more bunged up since Rituximab but it's a trade off against the immobility! I had a horror of a chest infection October to December so we have to take these things not account but still think Rituximab wins over these frustrating ailments! x
Don't worry NK your eyes will calm down. Pre RTX I used to regularly have allergic reactions like that...friends would suddenly say " Oh my God,look at your face!" and when I looked I had puffy eyes & swollen lips & ears, & on occasion my tongue swelled & that was when it got serious. But like a lot of auto immnune reactions it just went away......sometimes I could pinpoint the reason, but it seemed to be everything from Tomatoes to drinking from a plastic glass.....I never considered Yoghurt. I eat anything now & have not had any allergic reactions for many years.
I saw allergy specialists & tried desensitisation, but that seemed to make things worse. I just took anti histamine when it happened & it gradually stopped happening.
I've been on RTX very successfully since 2016...only disadvantage has been a couple of RT infections which I had never had before, & despite have the jab , I got the flu....but I will remain on Rtx as I am in the best place I have been in years. I take it alone....no Mtx.
Right now I have an unknown rash across my torso.....it doesn't itch or hurt, just looks awful . GP said she didn't know what it was......end of ...no advice offered. My rheumatologist has assured me it is not RTX related (altho Dr Google has some cases) & I'm off to see a Dermatologist, but not until I return from my long looked forward to trip to the Canary Islands next week!
That was nearly scuppered by a leak through my hall ceiling that ended up with me having to live in an hotel for two weeks as I had no heat or hot water in my house...only moved back home yesterday.
I'm sure your eyes will be back to normal very soon....but it is a most distressing occurrence......Raybans are an excellent idea......but as it's so very cold make sure they don't ice over!!!
Eyes have calmed down but still sore thank you. Rather zonked on anti histamines. but not feeling bad at all. Will take a little bit longer I guess. I just never touch shellfish and very sensitive to the oxalic family. No soya ever again for me. Maybe your rash came from being allergic to something at the hotel? Bedding? Towels? It isn't Rituximab that's been doing the hives for me, that's for sure. SOYA! Rtx only ever caused the odd UTI and blocked sinuses. A decent trade off for the huge benefits I've had for the past four years. I've had dermatology and blood tests for the colophony family of allergies a couple of years ago. I'm not latex allergic but very sensitive to it and all plastics. Elastoplast and plastic cuffs they use on the BP test too. Natural fibres suit me best. I'm having a soya blood test next week. If it says none allergic ... it's wrong!
I do think what the GP said I saw last Friday is true .. that Rituximab makes the immune system spilll over and histamine rise. He knew a lot about the drug .. which is rare for one of my GPs apart from the lovely one who trained in Rheumatology.
Leak sounds horrendous and hope all is back to normal soon. You could with jetting off now as snow is on the way! Hope you have a great holiday.
These allergic reactions are really difficult to deal with....at least my rash is not publicly visible........& I don't feel ill with it......actually it appeared before I stayed in the hotel......can't think of anything external that might have caused it. Having had flu my rheumy nurse suggested it may be a post viral rash? Will see if Dermatologist can throw any light on it.
I too will stay on RTX.......I feel as if I have a life again ......I can cope with the odd URT & sinus infection..... my rheumy has said if my next pre infusion consultation is satisfactory I can drift three months ...making it 9 months between infusions, & if all goes well I can move to just one duo of infusions annually. So here's hoping.
Unfortunately house walls are still cold & damp so have central heating on 24/7 to dry them out before I get them repainted. Then comes the matter of settling the insurance claim.......so far my insco has acted over & above my expectations .....paid for two weeks in hotel, taxis to & from house until I found reasonable parking....which they also paid for.
For once I think I timed something right....I left the UK yesterday.....my kind neighbour is supervising the heating at home & I am now in the sunshine ......so will watch the progress of the snow from afar! Hope everybody is safe & sound as it does sound rather serious.
Just hope my rash doesn't take a violent dislike to the heat.....although it is only (!) 20°c & breezy so I shouldn't overheat too much.
By the time you read this I hope you are back to your lovely self! Have you thought of eye make up alongside Soya ? Mascara in particular can cause very nasty reactions!
No it isn't eye make up. I know that. I wear very good gentle products and cleansers etc and didn't use anything new and it wouldn't explain hives on the stomach and lower arms. It's definitely soya. If you have allergies to shellfish and strawberries which I do then you are likely to react badly to soya I'm told. I'm not unwell with it. Just rather peed off the eyes were so sore but they are improving each day. I've had a lot of work to do on the laptop so that's been difficult to focus on.
I was indoors the two days the eyes were at their worst so no one got to see them except my partner who wasn't repulsed by puffy eyes!!
My first Rtx lasted 12 months but a junior rheumy consultant ignored my flaring hands when at my clinic review I said it's time now to get me in as it's wearing off. They made me wait and at 14 months they hadn't got a slot for me and the damage was done in the fingers. Since then my nurse insists I go every 6-8 months and at the mo she prefers 7. My CRP and ESR have been excellent apart from the first time the infusion was delayed.
After those hot soya hives I'm really thankful of the cold weather at the moment. I actually don't mind cold or snow at all as I used to fell walk in all weathers and still walk in snow and cold now. It's only constant rain that affects my RA and very sub zero like minus 15. We have been lucky in the part of West Yorks I live in with the snow that's come so far compared to places like the midlands and further south. The little flurries we've had have come and gone very quickly.
I don't think your rash will erupt in 20 degrees as that's not too excessive I agree. Just right. Hope that you have a good holiday!
Beautiful sunrise this morning ....lovely breeze, so I will have a walk along the coastal path to enjoy a fish lunch in Los Abrigos.....maybe not shellfish though! I'm not normally allergic, but my rash maybe!
Will avoid the bikini this trip...I bought a perilously expensive one piece swimsuit.....so will get my money's worth out of it!
It's hard to believe you had such a nasty reaction to Soya, but I do remember after I had breast cancer my Oncolgist did tell me to avoid Soya products.
Not on a biologic so unable to help on that score. Being the proud possessor of many weird allergies I thank goodness soya isn't amongst them as quorn has a rather dramatic, painful and unpleasant affect on the GI tract. I just wanted to say I'm sure your eyes will go down soon and you'll be your usual gorgeous self again. Hugs
Thank you Gnarli. Just wanting my eyes back to normal as it's been painful. Seems it is starting to work now. I'm on the antihistamines all week so should do the trick. Pharmacist said today they should really be working. The soya yoghurts gave me such intense heartburn for hours I actually wondered if it was anything to do with my heart. Gave in and had Gaviscon which got rid of it. I don't usually take tablets, but have had to this week/weekend. So yes I understand what you say re GI tract effects re Quorn. Hugs to you too.
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