Just had second infusion for first round of Rituximab treatment and all is well. Thanks to everyone for getting me through it. And now the follow up. I have a telephone consultation in 3 months - is this time gap standard practice?
I'm currently taking 10mg Prednisolone and want to reduce it down. Does everyone keep taking a maintenance dose after Rituximab.
So many questions 🙄 happy days everyone xx
Hi SALI, I am glad to hear you’ve had them. You shouldn’t need to be on permanent oral Pred once Rtx is working after a few months as Rtx is powerful enough to control RA without needing permanent oral Pred, but for now Pred is tiding you over as Rtx will take some weeks to fully effect.
So you MUST check your dose/course of Pred/tapering required with your rheumy as you can’t suddenly stop Pred yourself or do your own taper when you aren’t experienced enough to decide this. Surprised they haven’t been clear on this to you tbh. I’ve been there exactly as you are with starting Rtx and a slow taper of oral Pred. Took some months to slowly taper down under strict instructions from my rheumy. Was surprised I had many months on a very low Pred dose taper but she explained why.
So, take the Pred exactly as the rheumy has instructed and speak to your rheumy/nurse re this to clarify it’s continued dosage they want for you, as it’s very important you follow their instructions re Pred dose and not devise your own tapering plan. That’s a big no no! Best of luck and hope all goes well.
Yes, if all is well the rheumy team wait 3 months post Rtx first two infusions, then review you at your next blood tests etc., unless any issues, but do a quick call to the rheumy team to clarify what the rheumy wants re oral Pred. 🙏🩷 x
I start Rtx on the 22nd. Still a bit reluctant about going on such a strong immune suppressant to be honest, but best go along with what my doctors advise. It does concern me that after stopping Filogotinib on monday I'll still be taking 20mg of Mtx, plus have just started 10mg daily dose of Prednisolone for 2 weeks reducing to 5mg for the following 10 weeks. Combined with the Rtx that seems a lot of immune suppressants over a prolonged time for someone prone to infections. Think I'll be asking rheumy if it's necessary to stay on the Pred for such a long time.
Spoke with the Nintendanib nurse on friday and providing my bloods are ok I'll be starting it in 4 - 6 weeks time. I know it's necessary, but it's been a job keeping up with the number of blood and urine tests I've recently had and will be having in the next couple of weeks...........
It does seem like some hefty meds but your rheumy obviously thinks you need them for your aggressive RA and your lung issues. I hope Rtx and Nintedanib are soon working well for you. I was also on oral Pred and slowly came off it when Rtx was working well. It was a general feeling of well-being after around 8 weeks and I hope that happens to you too. 🙏 I hope the Pred brings much relief.
Thanks Nk.
Just got back from podiatry and found out that I have an ulcer on the sole of my foot. ☹️ No sign of infection according to the podiatrist, thankfully. Even so do you think I should inform rheumy?
Hmm they won’t be able to see it if you tell them on a phone call, so not sure, Wish. Have you got some treatment for it? The infusions nurse on the morning asks if you’re feeling unwell re colds/infections etc and would decide if you’re well enough re colds and being unwell, as some people have been sent away as they had bad colds when I was there. The ulcer is different. When are you having your next bloods done?
They have started treating it with a padded iodine dressing which my wife has to change every 2 - 3 days. They'll look at it again on the 31st. Rtx bloods and urine in hospital tomorrow morning...followed by routine Mtx bloods at my GP surgery.
To top things off nicely, my laptop is on the blink so will probably pick up a new one when out tomorrow. Could all this be an omen not to go on Rtx I wonder!? 😨 Just kidding 😉..................I think! 🤔
I hope all is healed by 31st. 🙏 Hope all’s gone well with your bloods. Laptop/MacBook Pro conked a month ago and been so busy with medical things so not had chance to sort it. Hope you found something. Take care of the foot and hope the Pred is helping you feel less ouch.
Just bought myself a new chrome book but my old one seems to have recovered so will carry on with it until it conks out.
I decided to tell rheumy about the ulcer and have just finished a return plonecall with the the rheumy nurse. She will have a chat with my consultant but thinks I'll probably need to postpone the Rtx until the ulcer heals. Since stopping Filo my arms/shoulders have got worse and the steroids don't seem to be much help as indeed they weren't when I was prescribed a course earlier in the year. So I asked the nurse that if the Rtx was postponed could I restart Filo, which she'll also mention to the consultant.
I appreciate problems can happen but this is all getting a bit much now and I'm beginning to get a bit fed up with it all. Anyway, let me know if you want to hear what they decide to do.
Take care
I felt the rheumy nurse would say likely to postpone Rtx until ulcer fully healed but was hoping it had healed by 31st. Hope the rheumy gets back to you soon re this and the current med. Glad you’ve got the Pred to tide you over. I need to prioritise a few things such as the MacBook Pro. I’m just tied up in this Abatacept shortage issue at the mo trying to sort that. Glad you got a new laptop just in case the other conks.
Have a few days not worrying re Rtx if you can. Relax and play some music and as it gets too much to cope with otherwise. Take care too, Wish.
Tell the rheumy nurse the steroids aren’t doing much. When did you start them?
How are you today? 🙏
Hi Neonkittie. Is this message for me or Wishbone? I get a notification everytime you and Wishbone reply on my original post. My stuff is pretty straight forward and simple, but you guys have very serious considerations. I hope this technical information isn't getting lost in my fliff flaff. I'm doing really well. Feel like Superwoman. When do the steriods start wearing off!?
Both, actually. 😀😀 Hope you’re feeling alright after your infusions.🩷 Hope Wish isn’t too bogged down with his pre-Rtx prep and delay. I had to take a couple of days off chasing Lloyds as it wont make a difference if I spoke to them today or Monday. Sometimes it consumes you so much you need a day off it all!
Thank you so much Neonkittie. Your intelligence and knowledge is invaluable. Hoping for good results for all 👍
Sorry for the distraction.....I should have started a thread of my own but tend to shy away from that for some reason and butt in when I come across a related thread. I was finishing up anyway as I felt I'd had all the relevant info from Neonkittie and need to make up my own mind as to what is the best course of action for me, which I've still yet to decide. Anyway, glad you are doing well on the steroids and hope you continue to improve..
I'm ok thanks, wifey is about to change my ulcer dressing 😟.....wish me luck. 🙂
I shall send a big positive healing vibe to your foot! 👣
Positive vibes most welcome. 🙂
It will all be less stressful once the foot ulcer heals and you can get back on track.
Thanks for the clarity. I will telephone department and try and get information on the decisions about my treatment. Thanks 👍
🩷👍🏻
Will do 👍
No I never took Pred with Rtx….but as you have been on it you can’t just stop, so I’d ask your rheumy nurse for a time scale to come off it. You might need to bite the bullet a bit but you really do need to get off it as soon as you possibly can and stay off it.
Yes I do know there are some people who need to stay on it, but if possible the less meds possible is my preferred route.
I don’t think there’s any particular time lapse between the two Infusions unless you have a problem……. that’s the joy of it. You just have the infusions and they will send you the date for your next set…..you just need to have a blood test every 6 months.I missed my last blood test and got a naughty step letter from the laboratory.😔
Good Luck with it….I hope it suits you….I have been on it for seven years now and it really is the most convenient treatment I have received, in over 20 years…I now only have one infusion & can last between 9/12 months between them.
Had my first ever infusion today - the Rituximab bio similar Rixathon. Very happy to have breezed through it with no effects.
I'm not on Pred - apart from as an eye drop - but am still taking Sulfasalazine and after my second infusion, I'll also be due an appointment in 12 weeks so assume I may be tapered off it from then?
I've tolerated it pretty well over the last 6 years but it seems to have stopped working.
I’m in a very similar situation re. Rituximab to you- as I think I said before. I have a routine f2f rheumatology appointment this Friday which was booked back in January . I’m also still on 5mg prednisone so intend to ask about that on Friday.
The infusions went well though they did stop the first dose towards the end as my temperature went up.2nd dose completed. Unfortunately I caught a nasty virus from my partner at the end of last week - cough, cold etc but tested negative for Covid. ( do the current tests pick up new variants?)
Have resolved to wear a mask more often including indoors if partner is ill. Last year when he had Covid I managed to dodge it entirely.
Would be interested to hear outcome re prednisolone for your treatment plan. Wishing you well x
Do try to avoid all types of infection, especially Covid, when you’re on Rituximab or it’s biosimilars. Avoid anyone showing symptoms (including your partner!) and wear a respirator mask in crowded areas. The LFTs do usually pick up the new variants but do test for up to 5 days on alternate days as it can take that long for viral load to be sufficient to show positive. Even a very faint line is a positive result.
Now you are on Rituximab you should qualify to get antiviral treatment if you do unfortunately get Covid - hopefully your Rheumy team will have advised you how to access them but ask them if not.
Thank you. Yes I know I qualify for antivirals but on 111 they made it clear that without a positive Covid test result they couldn’t give them to me. Will try testing again today and speak to the rheumatologist on Friday. Tbh I’m already feeling much better anyway.
Glad you are beginning to feel better and hope you recover quickly.
Don’t be too worried. I contracted Covid whilst on Rituximab and it really was nothing more than a bad cold..
Hi, Glad everything seems to be going well for you so far.
Yes, When I was on Rituximab I would have 3/4 month reviews so this seems normal practice. I never needed Pred when I was on Rituxumab so hopefully you will able to taper off the Pred once it kicks in., it was only when they took me off Ritux that I needed it, on a taper plan now and can't wait to be off it!
As I've said before Ritux gave me 7 good years..never needed extra steroids only while waiting to booked in for next cycle when there was a delay with Covid and I would have a Depo but never oral steroids.
I really hope it works for you but sure it will! X
Thanks. It's been a tough 3 years and I never expected to be back at square one. So great to have so much support, again, from this lovely community. Wishing you well x
I was on oral Pred low dose apart from a week at 10mgs, a month at 5 then a slow slow taper off. I knew that I’d not be started on Rtx for 2 months so my rheumy said I needed oral Pred to tide me over as I was in a very immobile state.
Once Rtx kicks in after a couple of months you shouldn’t need to be on oral Pred as Rtx should be doing its thing after a couple of months. Haven’t had any need for oral pred since then which was almost 10 years ago.
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