Dry throat and skin & headaches after Rituximab infusions

[Han1]

Hi there,

I'm wondering if anyone else has experienced these symptoms after Rituximab infusions?

I've just had the second dose after the first infusions 5 months ago.

I had a mild reaction both times on the first of two infusions: tingly, scratchy throat and mouth. But since that first dose 5 months ago I've had a really dry throat and at first, the sensation that there was something in my throat. ENT checked throat and said nothing to see, reassuring but hasn't got rid of the dry sensation. It's uncomfortable. I have also noticed a dry scalp and red, itchy skin on both sides of my nose. And the other thing is headaches 😕 I can't shake the frequent headaches.

Anyway, I thought I'd put it out there in case anyone else has had a similar experience.

Take care and best wishes to you all. Hannah x

[AgedCrone]

I have been on rituximab for six years. Thankfully I have not had any long lasting nasty side-effects …so if I were you I’d stick it out for another couple of months …It really really is the most convenient & for me the absolute best RA med I have had in 20+ years.

Obviously if it gets beyond bearable, do go back and speak to your Rheumatology Nurse, but unless she suggests you stop now do keep trying.

A lot of drugs are a bit of trouble at the beginning, but turn out to be really worth sticking with…hope you are one of the lucky ones.

[Han1 in reply to AgedCrone]

Thank you for your reply and reassurance . I'll defiantly stick it out, not much choice anyway as it's an infusion! But just curious to know about this dehydration feeling and if anyone knows how to ease it. No amount of water drinking seems to help.

Thanks again ☺️

[AgedCrone in reply to Han1]

Are you drinking plenty? Especially the days before the infusion…I know if I don’t keep a jug on my kitchen worktop to remind me to drink, I can get a headache for a day or two after the infusion.

[Han1 in reply to AgedCrone]

Yes, I'm drinking water a lot, especially because of this dry throat thing. That's why I don't understand why I feel so dehydrated a lot of the time.. I wondered if RTX can make you feel this way.

[MJSlide1958 in reply to AgedCrone]

May I ask? My daughter was thinking of asking her Rheumy to change from weekly Enbrel to a three monthly injection, only because she cannot bear taking methotrexate weekly to keep enbrel working! Are all 3 monthly biologics by infusion or is there an injection type?

[AgedCrone in reply to MJSlide1958]

Of course your daughter can ask her rheumatologist anything about her treatment.

Tell her to explain her reasoning to her rheumy nurse. Bio drugs aren’t just inter-changeable …her Rheumy will have made the decision about which drugs to give her from his experience & unless she discusses how she feels & just goes on accepting a treatment she doesn’t feel suits her….her Rheumy will think she is happy with what she is taking….& just keep prescribing it. So discussing her feelings with her rheumy nurse might help……they usually hear more reasons people want to change their medication & will know what to advise your daughter to do.

[MJSlide1958 in reply to AgedCrone]

Thank you

[Han1 in reply to MJSlide1958]

Hi, maybe you meant to ask AgedCrone your question? Because I’m afraid I don’t know the answer. But if it is by infusion and she’s worried about that, I can reassure her that my experience of having the infusions in the day ward, have been very positive. The nurses take such good care and it’s a comfortable place to rest and zone out for a few hours!

On another note… I’m not surprised she can’t bear taking mtx, horrible drug (in my opinion) I never got on with it and have refused to take it anymore, much to my rheumatologist’s frustration.

I hope she finds what she needs soon. H

[MJSlide1958 in reply to Han1]

Thank you

[RootsToots]

Rituximab gave me a swollen forehead and throat. The second time I ended up in A&E as the swelling was close to stopping me breathing. Also for me Rituximab didn't really help. It only slightly lowered my CRP level.

[Han1 in reply to RootsToots]

Oh no, how awful! So sorry to hear that. Puts how I’m feeling into perspective! Take care and thanks for your reply. H

[Joannos]

Have you spoken with RA nurse? I also have mild sgorgens which is dry eyes and mouth, you can get pastilles to help. The headache not sure but anyone of your joints could be playing up. Go with my first advice speak to your RA nurse

[Han1 in reply to Joannos]

Hi Joannos, thank you for your reply. I have just been reading about Sjogren's and recognise a lot of the symptoms. I’m slightly loathed to even mention it to rheumatology as I don’t think I could handle another autoimmune diagnosis!! Do you feel the dryness in your throat too? And what are the pastilles you recommend?

I’ll talk to RA nurse again though. Thanks again 😊. H

[Joannos in reply to Han1]

Hi my personal opinion is that we call all these collections of symptoms by different names but most of us have a collection unique to ourselves. Try not to get hung up about your collections various names, just call it RA and have done with it.

See the chemist re pastlles

[Susiebee31]

I had terrible headaches after my first round of rituximab and didn’t go for a second. 6 months of it and I decided not to do another. I’ve got pain everywhere else and to be honest it didn’t really work for me. They told me I was having rituximab but gave me a bio similar, not impressed. My cousins wife brilliant on the proper Mab Thera Rituximab but the bio similar didn’t work.

[Han1 in reply to Susiebee31]

Thank you for your reply and info. Sorry to hear your experience. I’m pretty sure I get Rituximab, but I will check. Take care and thanks again. H

[cyberbarn]

The sensation that there is something in the troat but ENT can't see anything is called Globus. There was a feeling that in women it was akin to 'hysteria'! however, thankfully, medicinal has started to move on, and there can be things that are going on in the neck that aren't in the throat but give the sensation that it is in the throat. For instance I suspect that my sore, dry throat that got to the point where I couldn't turn my neck without pain and where I started to have problems swallowing without pain, and my voice was going, was inflammation around the hyoid bone. Those bones can also dislocate or sublux and arthritis (OA RA. PsA etc) in the spine at neck level can result in referred pain (all the nerves around there are very close together). And of course Sjogren's includes having a dry throat.

But no, according to my GP that refused to listen to me, it was just a virus that would go in a few weeks!

So it could be any number of things causing this. Sadly the human body doesn't follow what the medical textbooks say or diagnosis would be easy. But remember, just because someone looked in your throat and didn't see anything doesn't mean to say that nothing is causing this sensation.

[Han1 in reply to cyberbarn]

Thank you for your reply Cyberbarn. Especially that last bit as a reminder, it brought tears! It’s so true. I have Hashimoto’s as well as RA & Fibro. It’s such a minefield when things start happening and new meds etc. I spent yesterday looking into Sjogren's and wondering about that now too. But the last thing I want is another autoimmune diagnosis!! 🫤

Sorry to hear you’re having it rough too. All the very best. H

[cyberbarn in reply to Han1]

It might not be that you have another autoimmune disease, it might be that you only have one version of an autoimmune disease, but the symptoms can be different for each people.

Diagnosis are a social construct. They are basically just made up. And many of these were made up before we really understood the mechanics of the immune system. So they were symptoms that were gathered together by various doctors. Eg Dr Hashimoto was a surgeon who did some histology on some thyroid glands that he had done surgery on, then after writing some papers on it they named this problem with the thyroid glad after him. Dr Sjögren was an ophthalmologist who saw a particular set of symptoms in patients and they named that set of symptoms after him.

Interestingly, Sjogren's is thought by some to present first with joint pain, and the dryness is a late indication of the disease. Imagine if Sjogren had been a rheumatologist rather than an ophthalmologist!