Rituximab and puffy hands and feet

[Susiebee31]

Puffy hands and feet after rituximab infusion, any one else had this?

[AgedCrone]

Thankfully no…been on Rtx since 2016 & have had nothing like that…in fact no adverse symptoms at all.I’d have a word with your rheumy nurse & get her opinion.

[Neonkittie17]

I never found this .. in fact the opposite as usually but not always (allergies, etc) most Rtx patients are given an IV steroid prior to Rtx and that used to make me feel almost normal. Skinny feet and great movement. We are all different, and maybe sitting down for many hours having the Rtx and not moving had some effect on your ankles? Worth telling your nurse you had this after your Rtx though as is anything that isn’t usual for you. I hope your ankles and hands are back to normal very soon.

[Susiebee31 in reply to Neonkittie17]

I had the infusion last November, I haven’t felt well since. During my first infusion my b/p kept rising as did my pulse. On the way home I started with the worst headache I’ve ever had and it gradually subsided over 4 days but my feet puffed up as did my hands. Told them when I went for the second infusion and they gave it to me slowly. No headache but I’ve been plagued with headaches on and off ever since my feet and hands still swollen and terrible night sweats I also get peculiar cramp and twitching in my leg muscles. I’m having telephone consultation tomorrow not face to face as my specialist nurse is isolating. To be honest I don’t think it’s worked for me at all I feel worse now than before I went on it.Thanks for your reply

[Neonkittie17 in reply to Susiebee31]

I’m sorry to hear it hasn’t worked well for your RA. Rituximab worked brilliantly to control my RA but after 4 years of no side effects it started to cause low Ig’s so my consultant is changing me to another biologic soon. Also stopped my vaccines working. I have had the night sweats/overheating since 2014, but starting Rtx also coincided with the meno and I started Fentanyl patches too, so never quite sure which causing it but yes, Rtx is definitely known to cause night sweats.

I also know that when my RA hasn’t been controlled my feet have puffed up and also in hot weather. I hope your phone call goes well. 🙏🏻

[cathie in reply to Neonkittie17]

Do let us know when/whether you get a new biologic after rtux. I haven't felt as well since about a month after my last infusion Nov/Dec. I'm wondering whether it has had any connection to the covid vaccines I've had. I know that the vaccines are affected by Rituximab, so could the reverse be true? That wouldn't stop me getting the vaccine, but I am asking the question. I've not had headaches but I do have puffy feet and higher ESR inflammatory markers. Waiting for a meeting with the rheumatologist now!

[Susiebee31 in reply to cathie]

Interesting. I do have to say my husband had covid as did my stepdaughter and granddaughter at the same time. I tested every day and never got it even with my other half testing positive for 10 days. Who knows how it works.

[Neonkittie17 in reply to cathie]

It’s going to be Abatacept, Cathie. My rheumatologist has had it approved. My immunologist said he wants me to wait until I’ve had two vaccines repeated and that would entail waiting a month after the second before starting Abatacept, so that would be third week in May. It could well be that Rtx is affected by the vaccines. Sorry to hear the vaccine(s) caused some disturbance to how Rtx was working well for you. I hope your rheumy appointment is soon. 🙏🏻

[cathie in reply to Neonkittie17]

That's interesting. Will. have to check how that's administered - where are you based? I think these things vary quite a bit according to where you are - I seem to remember you're in Scotland like me?

[Neonkittie17 in reply to cathie]

I’m in Yorkshire. Abatacept can be given by monthly infusion or weekly sub cut and I’ll be doing the injectable version as I don’t want to go into a hospital every month unless it’s the only option. I hope you can work your booster/vaccine around Rtx and you can discuss if Rtx is working enough with your rheumy soon.

[cathie in reply to Neonkittie17]

Thanks, its interesting to see what is happening. I saw that its infusion or injection and imagine that they might start with infusion and then allow you to opt for injection depending on reaction? I've had my boosters - 4th one was Moderna in mid January. I expect a 5th eventually but had no news yet on that

[Neonkittie17 in reply to cathie]

My biologics sister said often they start patients with an infusion and then they continue with doing sub cut at home if that is the patient’s preferred method. The infusions are much shorter than Rtx. Half an hour I understand plus the prep. You get two IV doses fortnightly then it is monthly. Sub cut is weekly.

[cathie in reply to Neonkittie17]

Yes that’s what I found on googling. As long as people don’t mind the injection, I don’t. It’s worth knowing about this

[Neonkittie17 in reply to cathie]

Hi Cathie, I gather you’re getting some info prepared in case Rtx isn’t working well anymore, but your bloods could show it is and, as you have already said, it could be a vaccine reaction. I hope it all settles. When I go for my second repeat vaccine 3rd week in April I’ll ask the main senior nurse in charge of the huge centre .. she’s there instead of a doctor and very experienced .. if she’s has anyone in who is on Rtx say what you and Susie have experienced re the vaccines affecting Rtx. Sometimes these things don’t always filter up to the rheumys for a while.

[cathie in reply to Neonkittie17]

That's great. My ESR is up quite a bit from pre the Moderna vaccine so something is going on! You're right about the specialist nurses they're invaluable. As is information from fellow sufferers, taken in the right way. My rheumy is very cautious and tends to take me for a 'thought journey' when we communicate. So I like to be prepared. Of course I dont know its the vaccines affecting Rtx, but its a possibility.

[Neonkittie17 in reply to cathie]

I’d think the rheumy would want to monitor you unless an adverse reaction when they know Rtx has been working so well. I think you’ve had several years on it? My decision has been made over a couple of years re low IgG/M, but the vaccine/no antibodies/my slow repopulation of B cells scenario was a negative combi and the hypogamma causing bronchitis. My rheumy says Abatacept is a biologic which is “more gentle on the lungs”. Hopefully it will be. We never know how we will react to a med, positively or negatively.

[cathie in reply to Neonkittie17]

I'm sure he will. He's helpfully cautious. I have now got some damage happening to my feet, which isn't good and I want to get that under control. Good luck with the hip replacement. My partner has had two now. He did quite a bit of exercises with help from the physio and was quickly back on his feet. Everyone is different though. Hope you do well!

[Neonkittie17 in reply to cathie]

Thank you Cathie and the same to you. It isn’t me having a hip replacement. Not sure who is? Whoever it is, good luck too from me. Well I’ll eventually need one as one hip is fused but painless at the mo and and decent mobility, but things can change. At the mo a hip op isn’t happening anytime soon. Glad your partner had such success. Hope you can get the foot situation under control. 🙏🏻

[cathie in reply to Neonkittie17]

Thanks. Sorry for being mixed up. too many interruptions at this end!

[Neonkittie17 in reply to cathie]

No problem 😄 Understandable.

[Bella59]

I myself had first two infusions last November,like you feel I have got more swelling in hands and thighs.Feel worse than I did before infusions.Looks like a change of meds in the near future.Afraid it is a case of try and see hopefully we both find a med that helps soon.I have hip replacement in two weeks when I 'm better will discuss with consultant new med.Hope you find new meds to help you soon.

[Susiebee31 in reply to Bella59]

It’s not just me then. I was on cimzia which worked well for me but got breast cancer and had to come off it. All the latest research I’ve read says it makes no difference even in people with previous cancer taking cimzia. I just feel so c***. The headaches alone get to me as I didn’t suffer with them before and my tinnitus has just exploded. I’m going to ask to go back on cimzia. I’m also concerned at not being able to get vaccines when they’re due. My fourth booster is overdue by months now. Hope your surgery goes well and you find something that works for you too.

[liveinwoods]

Rituxin did not work for me. I felt drained and out of sorts for months afterwards. I had a rash which slowly calmed down in a couple of weeks but it added to the distress. It really did a number on my B cells and made me unable to generate any antibodies to Covid. I live in the US so after several months of isolation I have been lucky enough to get Evusheld, get some antibody cells, and finally able to meet with friends and have a social life.

[Susiebee31 in reply to liveinwoods]

Glad to hear other people feel awful after rituximab, I just feel totally drained and tired. At least I’m not neurotic😃

[Neonkittie17 in reply to Susiebee31]

It’s such a powerful med depleting all your B cells for long periods of time it’s no surprise the amount of reactions and side effects and even if many aren’t deemed very serious ones, they are troublesome and affect us enough. I’ve got chronic bronchitis as a result of low igG caused by Rtx. I’ve never had anything such as a reaction and from the Infusions. I’m not to repeat it though due to hypogamma/low igG/M. Some people have no side effects and I didn’t at all for the first 4 years. My bloods have not been out of sync apart from the igG/M the last 4 years. Everything else normal/fine.

[Neonkittie17 in reply to liveinwoods]

Hi, we spoke recently and you may recall Rtx did the same to me re blunting the first two Pfizer vaccines’ efficacy and zero antibodies (In the U.K. we haven’t got Evusheld ordered yet by our government .. it’s just been approved by a main U.K. health body here so maybe we will get it soon.) I have been waiting almost a year for B cells to return to a certain level and that has been the only thing I could do .. and continue to shield. I have just had my first vaccine repeated and due to Rtx causing long term hypogamma for me, I’m not allowed to repeat it. If I don’t produce any antibodies after three primary doses by end of June then hopefully Evusheld will be available and hopefully I’ll be eligible. I’m glad you have some freedom now.

[liveinwoods in reply to Neonkittie17]

I will certainly be watching for any updates on the availability of Evusheld to the immune deficient population in the UK. Fingers crossed for all of you! Health Care is such a lucrative business here in the US so that you usually just follow the money. Any new drug can make big money as soon as it hits the market. I was able to get Evusheld because it did not come in pill form. I had to go to the hospital for the injections and therefore it was covered under my medical plan. When I was prescribed Rinvoq (oral medication), it would have cost me about $14,000 a year- unaffordable. Any oral medication that I take is usually quite expensive. That includes eye drops that I use for dry eye and RA related problems. I am fighting with my insurance company right now to get an eye drop that was prescribed by my eye doctor and if it turns out to be too pricy, I may not be able to afford it. I am already using another eye medication that I almost $300 every three months.

[Neonkittie17]

Thank you. I hope you get your new eye medication very soon. 🙏🏻 Here the biologics/RA meds are funded by the National Health Service so we don’t have to negotiate with health insurance in the way you do. I was told my Humira at the time it was first in use was £500 a clickpen/injection. I understand it came down in price but you can see the financial appeal of biosimilars to those who are funding them. I managed to stay on Rtx original as was worried any change would upset the only RA med that worked so well for me for many years. Fortunately, my rheumy was on my side there.

[Paisley58]

I usually get this during and after my infusion but it only lasts a few days and then I am right as rain. They've never told me why it happens only told me to call if it lasts longer than 7days which has never happened. Lasts about 24-48hrs at the most.

I suggest you talk to the team who did the infusion or your rheumy nurse hopefully they will be able to give you the answers. Best of luck 👍

[Susiebee31 in reply to Paisley58]

Thankyou for the info. I have a lot of questions to ask!

[Paisley58 in reply to Susiebee31]

Having infusion today and remembered your question so showed doctor at PUI unit and he says it could be the build up of fluids for having your arm in more or less one position for the infusion and he says it's quite normal for this to happen. Said should go in a couple of days. However if painful or last longer than a few days contact the unit or Rheumy/nurse

[Susiebee31]

Thankyou for the reply, still 4 months later still got puffy feet and hands though? Active RA seeing consultant Thursday. Never this bad on cimzia,also still having probs with lt shoulder, knees elbows and wrists.

[Paisley58 in reply to Susiebee31]

Just checking in to see how things are now; has the puffiness improved?

[Susiebee31 in reply to Paisley58]

Not really nor the tinnitus headaches are less but my left shoulder and arm still keep me awake at night. Starting cimzia again not sure when but am ringing next week to get a rough time. The lack of sleep gets to me! Thanks for asking.

[Paisley58 in reply to Susiebee31]

Oh dear really sorry to hear that things haven't improved much. Thank you for taking the time to let me know. I have fingers, toes and everything else crossed hoping your Rheumy will find the right combination to ease your symptoms.

Urgh.. ...Lack of a good night's rest is the worse, 😫have experienced this in the past. My GP did prescribe a short course of Promethazine, 2 a night for a week and it did help easing the pain and discomfort, relaxing the body so I could get some rest. Maybe having a chat with your GP maybe they can help. Sending you lots of positive energy and wishing you well really soon. 🙏