Hello...
I’m due to start my first infusion of Rituximab on 20th at Addenbrookes. This great forum has answered many of my questions around this treatment with the help of the search bar!
One thing I’d like to ask... has anyone had this treatment during the pandemic and been told to wear face masks throughout the treatment? The thought of wearing a mask for the entire day pains me 😞
Yes I have. It’s not a big deal. All the nurses will be wearing masks and probably other PPE too. Just think how well you will feel when the drug starts to work it’s magic. Then shut your eyes and try to doze through the infusion. Worked for me! And now I’m feeling better than I’ve ever done. Result.
Thanks Lolabridge
For me I struggle with wearing masks for more than an hr at a time due to issues with sinuses. ( pain & discomfort due to GPA Vasculitis)
Was hoping we could get away with wearing them whilst having the treatment as inpatients don’t have to!!
Will try to doze through it & think of the magic!!
I had an Infusion last month, & once you are all set up you can let the mask slip.... I don’t know about you....an hour into the infusion...I doze the rest of the time. The nurses wore their masks all the time..but they didn’t hassle the patients as we were all well spaced out....I mean far apart...not out of it!
Hope it all goes well for you.
I’d have been concerned if my neighbour had removed their mask. Rituximab can take 4 hours, a long time to risk exposure
4 hours? I’m lucky to get away with 6 hours!
But I would sit there for 16 Hrs to continue to feel as well as I do now.
I agree Cathie. It’s an enclosed space and no windows open!
My clinic has the windows open365 days..hence I arrive with my trusty blanket & woolly socks & sleep warmly.....My mask does migrate.....but I’m not too worried.
Thanks AgeCrone
Damn I thought you meant the latter!
Let’s hope I can doze this will be my first one. If I’m not allowed to let slip with the mask I will hide in the toilet Cubicle periodically!!
If you are not used to taking anti Histamines..you’ll be out like a light.
Do remember to wear something easy to manage on those “bathroom breaks”
Trying to haul up pants & then do up a trouser zip is not easy with a drip in your arm & controlling your drip stand!
Yes, had my treatment last week and wore my mask all day, not a problem .
The nurses do it do in day out so I think we can manage for a day .
Being a nurse in the community myself im aware of that but been working from home for much of the year! I have issues with sinuses which is why I struggle. But will do anything to feel better as well as protect myself & others
What about a shield? Might that be more comfortable?
I may well give that a go thanks helix
Yes in Edinburgh. Everyone wore masks, we had our own bottles of hand sanitizer. I found taking my glasses off for long periods helped.
I would have been willing to wear a Hazmat suit just to get my infusion! 🤪
😂😂
Can I be nosey and ask are you group of ladies all lupus I’m told in my clinic ra is not been covered with ritx ? Sorry to hijack your post x
I’ve got vasculitis Vonnie.... but tend to use this forum too as meds are similar & generally much more informative around these treatments
I was on ritx my nurse at clinic said only the severe lupus patient are on ritx ..x
Yes that is right...I have a friend with Lupus & she has been told her disease does not qualify for Rtx.
RA patients have to have a DAS score of 52+ & to have failed on 2 or 3 Dmards one of which must have been methotrexate, before they are put forward for Rtx infusions. The number of Dmards differs in different HA areas.
Your welcome Vonnie....I think most of us chatting here about rituximab have RA....not Lupus.
I don’t quite understand what you mean when you say your clinic says RA has not been covered by Rituximab.....do you mean your clinic says they don’t give Rtx infusions to people with RA.
Well we here are living proof that RA patients do you have rituximab infusions...
Mish-da is about to have her first & I have been having them since 2016.
Hi AC I do realise everyone as ra How things work with das score and so in been in here fir about 4 years now ... my clinic gives ritx I've had it in 2019 and the very beginning of 2020 just before covid...they changed ritx to a tocziflizmab injection recently because of covid they say only the severe lupus patient are having ritx and not the ra... I've had every last drug ritx seemed to be the best out the bunch .just seems so unfair that's I see people on here on ritx for ra but my hospital have said no ...tocilizumab is not suiting me bad stomach issues...so frustrating to read you and others are having it ..sorry to bore you . Xx
Ah I see ...your clinic stopped Rtx because of Covid...I think that was an area HA decision when they didn’t really know what they were up against & it seems you are one of those affected.
Have you spoken to your consultant & asked him to speak to the hospital pharmacist explaining the Tocilizumab is not suiting you? But I suppose they can’t supply it just for one patient.
I do know how you feel it took me 16 years until I got settled on Rtx.
I hope something turns up for you very soon.
I waiting for the nurse to ring I missed her call.today...seems a bit unfair you can have but I cant..Joy's of Rona .
My god 16 years that's a long time . I've had steroid shot so I full of energy for now its marvelous drug although it sends me loopy for abit its settling down now do not know what next for me I seem to have run out of option..bit if a jigsaw puzzle this RA I dunno will wait and see whats they have to say..
Thanks AC
Try not to have too many steroids ....thankfully I was found to have very nasty reactions to them so have not had many over the years. I recently fractured vertebrae and after MRI and DEXA scans have very thankfully found I do not have osteoporosis ...which I can only put down to the fact I did not have lots of steroids in my early days of diagnosis.
There are many more alternatives open to you besides Rtx Vonnie... make a note of all your symptoms for when you next see your consultant , and discuss with him what he thinks your next move might be.
Don’t hanker after a specific drug you have seen work well for somebody else or just because it is a Biologic....that leads to the way you are feeling now and is really not helpful.
Trust your doctors....they really are doing their best for you.
To late AC I've had a shed load of steroid just glad you dont have osteo and I hope.your better. Now my left knee is full.of osteo...wished I had this education I got from here at the very start...wished it would go away.. ritx worked good for my hands my feet and ankles not so much...tocilizumab was upsetting my stomach ...I dunno... AC that's was the last drug to.try side effect will.speak to.the nurse she probably make a appointment to spk to the doc.. but so thankful for this site..
Keep smiling and laughing ac xx
Oh ..I’m greedy..I’ve got osteo too. But I decided a long time ago that neither RA nor OA is going to take over.
Of course I’d rather not have either .....but there are some things in life you just have to suck up & live the best life you can manage.
I’m sure your doctors will come up with something for you to try......so just start telling yourself this could be what you have been searching for.......Good Luck!
Ac I've hijacked this post.. spoke with nurse said retry tocilizumab again could be coisendent with my stomach finger s crossed...no I don't let it rule my life that's would be mental... just hate the side effect and destruction its caused.....thanks for listening ac.
Keep smiling and laughing we have enough with this covid . Xx
No worries Vonnie... I’ll just start a new thread😂 Only joking we are all here to help one another. I wish you the best of luck. It’s so good to hear so many positives regarding RTX so hopefully I’ll get sorted. ROLL ON 2021. Keep positive 😊
I think for the safety of all involved, wearing the mask is a must for both patients and nursing staff during the infusion except for you drinking and eating lunch. I don’t think you should be allowed to ease it off when falling asleep as has been mentioned. Someone’s mouth could fall open and then they could breathe deeper and heavier. I’d not feel very confident at all to see another patient sitting near me all day without a mask, tbh.
I only went for my Rtx infusion on the understanding patients kept their masks on. There may be an option to put you in a separate/smaller room alone if you tell them you have anxiety about the mask. Mine was a two person room so maybe your hospital could do similar and enable you to remove your mask but it has to be at the nurse’s discretion who is treating you, as you would be breathing more directly on her each time she does your observations and sets up your cannula. My Sister did not want that.
Maybe if you can go to the bathroom a few times during the infusion and lift off one side via your ear loop of course, before you go in for a couple of minutes? Try to keep as cool as you can drinking cordial or water and maybe some face wipes to cool down your forehead if the mask makes you feel hot. I hope you have a successful day and good luck.
Thanks neon for a very formative post. As mentioned in an earlier post totally get the mask thing being a nurse myself. Wasn’t sure what to expect tbh but want to be prepared no anxieties around wearing the mask just the discomfort due to physical issues.
What baffles me is hospitals have varied degree of COVID regulations too. For example my Nana was in the N&N recently.. family could visit ( one at a time) no temp check. Same time my dad in Southampton hospital having bypass no visitors at all in the hospital!
Hi Mish-da, I hope in time we don’t have the need to wear masks but feel we will be with them a while longer. 😑 I know a few people who are anxious about breathing with them on. (It doesn’t bother me but then I’ve worn masks for years as I’m a printmaker and inks often stink even if they are safe ones! It’s actually the cleaning up fluids that are the more harmful things to breathe in.) I find the masks with the thinner, smaller adjustable ear loops are more comfy and the ones which have the little triangular piece for under the chin as they are a more snug fit. Hoping you feel much improved when you’ve had your Rtx.
Thanks Neon keep safe 🙂
You too Mish 💗
I go to a dedicated unit...only chemo & Rtx infusions treated there.....all patients are CV negative.......well spaced apart....so no problems ....it is so cold in there because the machinery needs keeping cool....even if somebody’s mask did slip whilst they were snoozing ...they are usually cuddled down in a blanket or throw of some sort....so their face is still covered.....and there is definitely more than the defined 3 m between us.
As you say there are vastly different rules.......I go to another hospital for a different condition and I arrived there at 10:50 for an 11o’clock appointment and the Rottweiller on the door made me go back and sit in my car for five minutes because she said the waiting room was getting crowded -when I walked into the waiting room there was one other person in there!
😱 it’s crazy isn’t it... and we wonder why there are increases again. No consistency at all which frustrates me no end particularly as I work in the NHS 😔 Anyway diverting now.. I could go on but need to sleep not wind myself up!!!
What I wonder is ....all the students pitching up at universities ......don’t all live where they are at uni .....so is anybody checking where they have all come from ....bringing their Covid infections with them?
I honestly think you could put a bunch of 10 year olds together to work out a better way of controlling infected people travelling all over the country.
I feel really sorry for people in the hospitality/restaurant industrIes who don’t know from one week to the next whether they have a job or not ....all at the whim of people who don’t appear to know what they are trying to achieve.
Maybe if a few heads could roll..... and fresh minds were put in to organise things ...we might be able to get control of the infection numbers....because right now it’s chaos!
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