My rituximab infusion is badly delayed, though likely to happen in September. Has anyone had experience of moving for rituximab to a treatment you can administer yourself through regular injections? This delay isn’t doing me any good.
Rituximab : My rituximab infusion is badly delayed... - NRAS
Rituximab
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cathie
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Hi Cathie
My infusion was delayed by 3 months but I’ve had one last week and due another next. Thank goodness! I thought about asking to switch drug but this one seems to work well for me and I could not face dealing with possible bad reactions/side effects after all those I had before. Also I assume we would have to wait (months?) for the Rituximab to exit our system and (more months?) for any new drug to start working, which could mean a long time for me on nothing but Prednisolone/steroid injections.
I had to keep pushing my Rheumy to get my infusion quickly so you may need to do the same.
Good luck!
I agree and it helps to be reminded of the complications. Had a blood test last week following a conversation with consultant on phone. If bloods are ok then he recommends infusion goes ahead. Day unit says they’re booked up til September. Am really feeling it now!
Poor you. I was suffering too although my inflammation markers were relatively low. I had to send photos of swollen joints and details of symptoms to clinch the deal!! Don’t be fobbed off. X
Thanks. Consultant has agreed in principle so when we get back from our week away in the Highlands I’ll get back to pushing for it. Hope yours keeps you well.
🤞🏻For both of us. Have a lovely holiday. Oh for the cool of the Highlands right now,
Cool but midgey. Can’t have it all!
Interesting, Cathie! I am currently waiting to hear from rheumatology about a change from infusions (at the hospital) to injections at home. My medication is Remsima (Infliximab), and the last infusion was 27th May. The next was due on 22nd July. Since the 17th July I've been expecting a call - I did phone a week ago and was told it was "in hand".
I do realise how short-staffed they are and, in any case, these changeovers do take time; not the fault of the hospital, but supplies have to be ordered and delivered.
I do hope you find the change, when it comes, beneficial. Not to have to visit the hospital is a plus in itself. My methotrexate is self-injected so one more self-injection is not a problem.
Good luck. Keep safe.
Infliximab was my first biologic which worked well for nearly 10 years. But agree with you about the bind of the regular infusion especially in these times. I had to come off it because of methoxitrate and it took a lot of hassle before we settled on rituximab which only requires 6 monthly infusions for me. But mine is 3 months overdue now and I’m feeling it. Not just joints, but insomnia and stomach pain I think are related.
Remsima is my first biologic - and I was told it worked in conjunction with methotrexate!
I've taken methotrexate since 1998, very successfully, until an aggressive flare after an accident last August. A long story, but suffice to say my rheumy decided to add the biologic to the mix. I'm still not convinced about this. The side-effects are very unpleasant - including a lot of pain dating from the second infusion. So, the verdict is out whether I continue or not.
You, obviously, are benefiting from Rituximab and it does seem a very long wait for your regular dose. Three months overdue is hardly acceptable. Ask some questions and bring up the possibility of injections. Better for everyone, you and the hospital in these uncertain times. But all these changes take time to arrange.
I’m not complaining about the delay given what the NHS is dealing with just now. I’ve set the process in motion and accept that I’ll have to wait a bit longer. I was just wondering whether there’s any experience out there of finding a similar to rituximab in injection form which would be less liable to disruption.
Hi Cathie
I'm sorry I can't help with this one, but just wanted to send sympathy . I was thinking of you yesterday as I came across the Joan Eardley catalogue. I did enjoy that exhibition, and meeting you. I hope you have been able to do any shielding in your bothy. x
We shielded in Edinburgh because our house in the Highlands was in a vulnerable community an hour from the nearest hospital! But it went ok although not without consequences I fear. Battling a feeling of leaving my comfort zone now we’re at LOch Broom. Upsides are the online opportunities to view exhibitions I’d have missed otherwise- like the tree one at the Hayward and the new one on Nature at Camden centre. Hope you’ve been ok and can get out safely now. Xc
Yes, the Tree exhibition is stunning. Didn't know about the Camden one, so will check that out. thanks.
It's been OK, . But it's much harder now when not everyone is respecting the rule about mask wearing. x
Hi Cathie sorry to hear this. I was about to post something this week very similar to your post as I’m having issues. Wanted to ask the very same question. I presume due to the virus that this is the reason you have not had your Rtx infusion? I was told in April by a rheumy nurse (not my own nurse) that the hospital was not safe to come to and also I should postpone for May as I had had a small op mid March but hadn’t healed properly. I postponed for June too as I was told by my nurse that the infusions ward had moved to a large open one but has now taken on another hospital’s rheumy patients so spacing was tight. I agreed to review end of August and have got a provisional infusions date for mid September. So far after 10 months I’m just starting to feel some tweaks In joints returning. Very unusual I’ve hung on so long tbh. I usually have Rtx at 6-7 months.
I am due to review/phone call with my nurse end of August and want to chat to her about alternatives, maybe an injection to do at home and was thinking of another similar level med I know can be administered by injection also at home, even though the infusion of this med is much less duration than Rtx. Or possibly a JAK. The infusion works more effectively for many than the injection I was thinking of. Rtx has given me sinus/respiratory issues too but they are dealt with by abx but it’s every other month I need to take them. Rtx has given me the best mobility and got rid of all RA inflammation.
Presume it’s because you can’t get your infusion as opposed to being worried about attending hospital at the moment. Hope you can talk to your rheumy nurse and ask if you can have your infusion sooner and of it is a current crisis issue determining that. x
Think very carefully about changing from a Biologic that suits you...there might be no going back.
It seems clinics are getting going again,,,I had a Rtx infusion last week...only a month overdue.
Thank you AC, you’re right and I know this .. probably needed to hear again from someone who has Rtx and has experienced some bad RA times pre Rtx. Both rheumy and respiratory consultant say I’m right when I say to them ... I could jump out of the frying pan into the fire. I could. Will chat to my rheumy nurse biopics specialist end of August. Hope all went to plan for your Rtx last week.
I read back and saw Cathie’s issue is that she can’t get in. I’m sorry to hear that indeed. 😑Hope everyone’s appointments can get back on track.
My issue is that I'm waiting. Away from home for a week, I know they'll fit me in as soon as they can, so I'm not complaiing.
I’m sure it is the current crisis delaying matters and I hope you enjoy the rest of your holiday.
I’m trying to work out if my infusion last week is having side effects I have never had before....or if it’s just a coincidence with these very high temperatures. The only difference was I changed the type of steroid I had.
I love the sunshine & hot weather...I would normally be out on my sun bed in weather like this ...but just don’t feel like it....my hands & wrists are worse than before the infusion....& strangely I’m feeling really cold!
Guess time will tell when it cools down,
I hope you're OK, I do sometimes feel groggy after the first infusion.
I only have one infusion.....it has worked well so far..lasted 7 months this time. Annoyingly rheumy’s Secretary is on holiday & her stand in is kinda away with the fairies....but will see rheumy next week if things don’t settle down.
Have you always only had one infusion or since this year? Strangely I did ask if that was possible when I started Rtx in 2014 but they said no.
No..I had the first single infusion in January ...but I am very sensitive to steroids & the Methylprednisolone I had then resulted in a nasty reaction.....so it was changed last week.
There has been a lot of research & the results found there was hardly any difference in outcome with one or two infusions after a few infusions......so my rheumy said to try it.....& steroid reaction apart I felt no different.
I’m hoping it was that or the heat that has knocked me off track this time.
In fact we have just had a magnificent storm....& I am telling myself my wrists are less swollen.....altho weather normally has no effect on me.
I normally take it easy for a few days after an infusion then I hardly know I have R.A.
Time will tell.
There’s been incredible storms in Edinburgh but we’re in Highlands for a week, our first time away since January! Lovely here apart from midgies.
Yes my biologics nurse specialist said in March to me when we chatted, about the single infusion being as effective as the double and all the research done, so they feel confident. Only Time Will Tell .. as the Asia song goes! I feel this could be better for us if it does hold as it could be less side effects meaning the long term ones. I’d be glad to have less sinus and wheeze. Less antibiotics. If it means your immune is less compromised/lowered then that’s a good thing. Not sure of that though. I’m fine about the one infusion. Since 2014 and starting Rtx my R.A. has been negligible apart from once in 2015 when the admin let me down and didn’t get me in on time and in the seven week wait I went downhill rapidly. My issues are from old joint damage from Osteo. Only surgery remedies those.
I asked day unit nurse about the one dose, she didn’t think it was standard here (Edinburgh) but that consultant would decide.
It may be the different IV steroid. I always feel out if for about three days after one Piriton. The steroid IV or indeed any joint injections I ever have make me very hot but not shivery. I hope the hands and wrists calm down soon. Did you feel like you were flaring before you had your infusion? I know you said before that you didn’t like to wait longer than six months. I can go downhill in a matter of days to the point I’m in bed immobile when a flare comes on.
Yes...I knew I needed the infusion .....I made 7 months this time but had hoped for 9 months....as I do this time.The less drugs the better as far as I’m concerned.I can throw a wobbly on an Aspirin....so all through my R.A. I have only taken one drug at a time...with a good space between...but no Pred. Luckily I have had the same rheumy for 14 years....so he knows surprise new drugs are a No No!
For a while Depomedrone was OK...but I went off that about 5 years ago....shame because it lasted well.
I love Piriton....I usually sleep the day away...I leave my arm out for my BP to be taken & my Bio nurse carefully takes my temp not to wake me....thankfully I wake up feeling quite alert as I drive myself home.
I took Piriton to get to sleep once on the advice of my doc. Only short term. I can’t stomach Aspirin and Penicillin sends me nuts but I seem to tolerate some high level meds. I used to have Kenalog joint injections then after a few years they didn’t work so well so I switched to Depomedrone and they were better but I don’t have many joints injections now. Once or twice a year to my dodgy knee.
My last Rtx infusions were in early and mid October so I’ve gone 10 months.
Any steroid sends my blood sugars sky high. I know how to handle it now but it’s a pain!
Yes they do affect that I know even though I am not diabetic or suffering from high blood sugars as such, I had higher blood sugars after taking Pred for ten months 2015/16. They did return to my normality about four months after.
I find it helps to know what's causing it. I used to pee frequently after my infusion (+ steroid) and it took a while to work out what was causing it.
The IV steroid does cause a couple of loo visits for me during the night after the infusion and normally I don’t need to get up. I was told it can do that.
as a diabetic (type 2) I know that's down to high sugars, so I avoid sugary / carb loads after the infusion. Once I treated myself to a special gelato and really paid for it!
Well done you ...as I said I’m aiming for longer gaps...unfortunately there is nothing anyone can do apart from eating well & not overdoing things to extend the time between infusions.
For me reverting to frequent painkillers defeats the object....I’d rather give in at 6 months.
When I read how so many people seem not to find a drug regime that suits them....I reckon to be as well as I (usually) am after 20 + years of RA I should consider myself very fortunate & not whinge too much when everything doesn’t go to plan!
If only the Pandemic could get sorted I think a lot of people could stop stressing & feel much better....PollyAnna that I am...... I just think Que séra- sèra......
Yes eating well and pacing yourself are vital. I think as I’ve been out less I’ve saved my joints so to speak but need the exercise so doing more now,
I was doing a 30 min walk daily before coming away, but midgies adore me and I need to stay inside! Am about to have a zoom meeting with physio and hope she'll put me right about exercise.
Hope you got your advice and your Zoom call was successful. Midges love me too Cathie! Sadly!! I’m covered in my tum and legs with bites from nighttime. I blasted one last night with a tea tree and lavender spritzer on my under sheet before I got in bed. Nightly ritual to throw the duvet back and scan the sheet! Easy to see them on white but the patterned duvet cover .. the blighters hide on it! I use witch hazel gel for the bites as they get very red and sore on my skin. Is that the same for you with skin reactions?
Pretty much. I dab bites with Anthisan as soon as I notice them. But its stressful isnt it especially at night.
I’ve do Anthisan too as soon as notice them then I use some witch hazel gel a day or so after. They are a real nuisance.
The consultant has started the process so I’m hoping I’ll get it in September. Ive felt ok about going into hospital for a couple of months, saw for myself the situation in A&E in edinburgh RI and was reassured. My partner had a hip op there 2 months ago and was fine too.
I hope you’re ok
I’m glad you’ve had a more safe environment where you live. Sadly it’s not been like that here in parts of Yorkshire.
Hi cathie I was on Rituximab for about 3 years after everything else had no effect except for all the side effects which were not nice at all
I was put on Toxcimulab (sorry if not spelt right) Infusions monthly up to May this year, I had a short spell in Hospital with severe Breathing problems which was quite scary, just before that I was started on weekly Injections of the same Biological with Antibiotics 3 times a week of which I only had one before going into hospital and still haven't had another one since apparently they are waiting on another test which they took whilst I was in there.
Hope you get something done soon x
Thats an interesting experience, I hope they get your treatment sorted soon.
Should of had mine back in April, now having it on 27th August and 2nd on 10th September. Dr gave me a steroid injection in May to keep me going. Hopefully the extreme fatigue will go when I have it as the combination of this and the heat is unreal.
Hope yours goes ahead in September x
in the same boat here but told am on waiting list so hoping for Sept too. I don't think i can take anything else in the interim tho'. Sympathy 2u x
I arrived home after a week away in the Highlands to find a letter giving me 3rd Sept and then 2 weeks later. Not a minute too soon, I feel wrecked. Hope you’re doing better.
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